An important part that has defined who I have chosen to be, the kind of life I have chosen to live, and the kind of mindset I choose to live by.
The difference in life is how we let things define us – what we let control us, what we choose to control. We can have a life with purpose, strength, and great meaning. That is if we decide that is what we are going to do.
You either get bitter or you get better. It’s that simple. You either
take what has been dealt to you and allow it to make you a better
person, or you allow it to tear you down. The choice does not belong to
fate, it belongs to you.” – Josh Shipp
Sometimes you will be in control of your illness and other times you’ll sink into despair, and that’s OK! Freak out, forgive yourself, and try again tomorrow.” – Kelly Hemingway (I always say I can do this twice a year)
Life is either a daring adventure or nothing at all.” – Helen Keller
“I often say now I don’t have any choice whether I have Parkinson’s, but
surrounding that non-choice is a million other choices that I can
make.” – Michael J. Fox
Motivation
We
have all seen them. The wonderful, brilliant quotes. Made by famous
people. Each one speaks the truth. They seem very simplistic when you
read them.
If I do this my life will suddenly be better.
I will achieve the goals I have set for myself.
I often wonder about these quotes. From what context were they taken. Do
they spout them out randomly. and some Executive Assistant writes them
down. Are they part of a speech, and are then pulled from the
transcript. Do they actually believe some the crap that is put out
there. Or is it a speech writer. Some of them seemed to be very well
thought out (if you know what I mean ).
The reason for this IS....
I find myself sitting (way to much) and thinking "I have to get back to the gym " .
They are saying that exercise is the new drug.
Well Duh !!!!! I knew that 5 years ago.
Like I said, I find myself at an impasse
I know going to the gym, and doing my 45 minute work out.
Will allow me to walk a lot easier, reduce the amount of pain I have. Let me sleep a lot better at night.
Most importantly slow the progression of Parkinson's disease.
Cheryl reminds me to go the the gym.
BUT I CAN'T SEEM TO MAKE IT HAPPEN.
And I am not alone
I
really admire the people that set up everyday, Get to the gym at 5
-5:30 AM. work hard at a workout for 1 to 2 hours them go to work. That
takes dedication and commitment. Two words not in my vocabulary when it
comes to the gym.
So what do I do .
I have already stated the reasons why I should be going to the gym.
And they should be enough.
So what are the reasons (excuses) I have told myself for not going to the gym
1. I didn't get a good night's sleep yesterday, so I will sleep in tomorrow morning.
2. My dystonia is acting up, and I am too sore to work out
3. I have an early appointment, so I have to be at the office early.
4. I was awake at 3 am, and I need to rest instead.
5. I can practice a little more on the piano
6. I just don't want to
This week I went back to the gym
Monday and Wednesday were Spin classes, and Tuesday and Thursday, I worked out with the weights.
Friday I stayed home. I decided I was going to go for a run / mostly walk .
Well
according to my Fitbit. I was .67 Km when I stopped, The dystonia was
just to much, so I returned home. Making the total trip about 1.34 km.
But I then went online and found a yoga video (cute chick) and proceeded to follow along for the next 30 minutes.
One full week of exercise.
So what is the result.
Overall I do feel better. Yes a little bit
Did it help me sleep. By Thursday yes
Did it reduce the amount of dystonia. No not really.
Has my motivation to go back to the gym increased. Not really.
So what did finally motivate me to go back to the gym.
I think it was realization that ultimately I am responsible to only myself.
I owe it to myself to make sure that I give myself the best possible chance to have as normal a life as possible.
If I want to do things I want to do. I need to be able to do them.
If I can do that for me , then I can be the best possible person I can be to everyone I care about.
Remember : It's only inconvenient
Friday, 7 December 2018
Monday, 8 October 2018
A Parkie Turns Sixty
A Parkie turns sixty ......
When we, well I, was in my late teens (some would say I never left), I would try to figure out in which year I would turn sixty. I would usually give up and decided it was too far off into the future to be of any concern.
The concept of living to this age was completely foreign to me.
Sure my parents where sixty, but they are your parents, and they are always old.
I remember my mom's sixtieth birthday party. It was for grown ups only (us kids weren't invited).
It still didn't sink in that some day I would be that age too.
So??????
Here we are on the eve, so to say, of the big event.
I really never considered the idea that I would make it this far.
I have pretty much been a " live in the moment" type of guy.
Even before the Parkinson's I would rarely think more than a few days in advance. Someone asks what the weather will be tomorrow, I would not have a clue. I generally just look out the window and reach for the right coat and shoes or boots.
The problem with being a "live in the moment" kinda guy is you're not really great at planing.
We, as a group, have been taught that you work until you are 60 then you retire. And join a golf club. Well that sort of stuff just doesn't happen, it takes planning, it takes discipline. All the things, well lets say I know the concepts.
I am a lucky person.
My father was in the Armed Forces and because of that we enjoyed a great life. When it came time for me to get a job, I simply said to myself, this is what I want my life to be like (thanks Dad).
And it was. There were some times in the middle when we weren't exactly where I wanted us to be,
but things generally worked out. Definitely not through my amazing planning skills.
As well, along the way I met probably the only person who would ever marry me, and she did.
Now I am a partner in a small but successful company.
So now I am turning 60.
Why do you TURN 60? Shouldn't it be, you grow into 60, or fall into 60 (that's me), or you peacefully edge your way to 60?
I suppose it's because it's like you turn a corner and WHAM you're fucking 60!
I don't feel sixty.... in my head I'm still twenty something. I see a softball game being played and think, I could play. Well I could barely play when I was 20. I sure as hell am not playing now. But I could do it.
I take on jobs around the house. You know... carry this, move that. Takes two days for the pain in the, hip, knee, elbow to go away (some).
And now I am turning 60
In 2013 I was diagnosed with Parkinson's.
Turning 60 means what?
I don't know.
Is having an incurable neurodegenerative disease any different than having diabetes, high blood pressure? Not really.
If you develop diabetes, you have it for the rest of your days. You can manage it with diet and exercise. But it is still there.
I guess the difference is that with Parkinson's you can see the deterioration.
You are reminded of it every time you take your pills.
I started with 1 Carbodopa/Levodopa 3 times a day.
Now I am up to 4 Carbodopa/Levodopa 4 times a day
If you miss an insulin dose you could have a severe reaction, maybe even fatal.
Take the dose and things return to normal.
If you miss a Parkinson's dose you won't die. It might feel like it at the time.
Take the dose and you're still screwed for the day. Just go to bed and hope for a reset tomorrow.
I guess that is what makes 60 seem so special.
When I was 30 I really did not think I would live this long. Even though my parents were 60.
So here I am about to turn sixty. So that means every day beyond sixty is a bonus day.
If you had asked me 5 years ago what I would be like, I would have told you I would be in a wheelchair and living in a single level bungalow. I would be parking in the blue spots by the store doors.
The reality is, there are days, and moments when I can barely function. There are days when I feel almost normal again.
Looking forward I don't know what will happen.
Parkinson's is marching on. I am starting to slowly regress again. I can feel the difference. I am getting stiffer. I should be going to the gym more than I do. But it is hard to stay motivated.
I have increased my meds myself ( DO NOT DO THIS WITHOUT TALKING TO YOUR DOCTOR).
The thing about Parkinson's is it can rob you of your future if you let it.
But for now the future is a lot closer, and I am a lot more short sighted then I was before.
Instead of looking 5 years down the road, you tend to look as far as your next doctors appointment.
For the secret to your future lies with the next set of medications.
For now I will continue to "live in the moment".
Everything is a guess.
Remember : It's only Inconvenient.
Excuse me Michael, hey Mr. Fox, can we talk?
When we, well I, was in my late teens (some would say I never left), I would try to figure out in which year I would turn sixty. I would usually give up and decided it was too far off into the future to be of any concern.
The concept of living to this age was completely foreign to me.
Sure my parents where sixty, but they are your parents, and they are always old.
I remember my mom's sixtieth birthday party. It was for grown ups only (us kids weren't invited).
It still didn't sink in that some day I would be that age too.
So??????
Here we are on the eve, so to say, of the big event.
I really never considered the idea that I would make it this far.
I have pretty much been a " live in the moment" type of guy.
Even before the Parkinson's I would rarely think more than a few days in advance. Someone asks what the weather will be tomorrow, I would not have a clue. I generally just look out the window and reach for the right coat and shoes or boots.
The problem with being a "live in the moment" kinda guy is you're not really great at planing.
We, as a group, have been taught that you work until you are 60 then you retire. And join a golf club. Well that sort of stuff just doesn't happen, it takes planning, it takes discipline. All the things, well lets say I know the concepts.
I am a lucky person.
My father was in the Armed Forces and because of that we enjoyed a great life. When it came time for me to get a job, I simply said to myself, this is what I want my life to be like (thanks Dad).
And it was. There were some times in the middle when we weren't exactly where I wanted us to be,
but things generally worked out. Definitely not through my amazing planning skills.
As well, along the way I met probably the only person who would ever marry me, and she did.
Now I am a partner in a small but successful company.
So now I am turning 60.
Why do you TURN 60? Shouldn't it be, you grow into 60, or fall into 60 (that's me), or you peacefully edge your way to 60?
I suppose it's because it's like you turn a corner and WHAM you're fucking 60!
I don't feel sixty.... in my head I'm still twenty something. I see a softball game being played and think, I could play. Well I could barely play when I was 20. I sure as hell am not playing now. But I could do it.
I take on jobs around the house. You know... carry this, move that. Takes two days for the pain in the, hip, knee, elbow to go away (some).
And now I am turning 60
In 2013 I was diagnosed with Parkinson's.
Turning 60 means what?
I don't know.
Is having an incurable neurodegenerative disease any different than having diabetes, high blood pressure? Not really.
If you develop diabetes, you have it for the rest of your days. You can manage it with diet and exercise. But it is still there.
I guess the difference is that with Parkinson's you can see the deterioration.
You are reminded of it every time you take your pills.
I started with 1 Carbodopa/Levodopa 3 times a day.
Now I am up to 4 Carbodopa/Levodopa 4 times a day
If you miss an insulin dose you could have a severe reaction, maybe even fatal.
Take the dose and things return to normal.
If you miss a Parkinson's dose you won't die. It might feel like it at the time.
Take the dose and you're still screwed for the day. Just go to bed and hope for a reset tomorrow.
I guess that is what makes 60 seem so special.
When I was 30 I really did not think I would live this long. Even though my parents were 60.
So here I am about to turn sixty. So that means every day beyond sixty is a bonus day.
If you had asked me 5 years ago what I would be like, I would have told you I would be in a wheelchair and living in a single level bungalow. I would be parking in the blue spots by the store doors.
The reality is, there are days, and moments when I can barely function. There are days when I feel almost normal again.
Looking forward I don't know what will happen.
Parkinson's is marching on. I am starting to slowly regress again. I can feel the difference. I am getting stiffer. I should be going to the gym more than I do. But it is hard to stay motivated.
I have increased my meds myself ( DO NOT DO THIS WITHOUT TALKING TO YOUR DOCTOR).
The thing about Parkinson's is it can rob you of your future if you let it.
But for now the future is a lot closer, and I am a lot more short sighted then I was before.
Instead of looking 5 years down the road, you tend to look as far as your next doctors appointment.
For the secret to your future lies with the next set of medications.
For now I will continue to "live in the moment".
Everything is a guess.
Remember : It's only Inconvenient.
Excuse me Michael, hey Mr. Fox, can we talk?
Sunday, 26 August 2018
THe Lost Blog : The Sadness
The Lost Blog
The Sadness.
Like I said I had no intention to publish this blog
But recent posting on the Parkinson Chat group and some high profile deaths.
Made me think.
If I could, by putting this out there convince one person to continue to fight .
I know when you are in the middle of it, it can seem like there is no door out. No light.
But there is.
YOU JUST HAVE TO LET THE LIGHT IN.
Only a crack is needed
I had originally wrote this blog back in May
I had no intention to publish it.
It was intended to be just a journal entry.
It can come on at any time.
Tuesday, May 15, 7:30 pm
We had one of the best days in business we ever had.
I had just confirmed, one order for 7 copiers, and I had sold another to a different client.
The Parkinson's dinner was moving along . We have sold out .
I have received most of the money .
I had a golf date on Friday.
Life seem pretty good. I should be happy .Ya think!!!
So it's around 8:30 pm (I took my last pills of the day at 6 pm)
I am sitting on the couch watching something can't even remember what.
And the Sadness comes
It starts with tears. I am not crying, but my eyes start to water.
I know whats coming.
There is something different. A feeling. Not a physical feeling. But one inside me.
Then my skin starts to tingle (no other word to describe it ). This happens sometimes when the meds are not kicking in as well as they should be.
You know the feeling you get when your foot or hand goes to sleep, or the your skin feels when you have the flu.
Well for me that tingle is over every inch of my body.
Then all the thoughts you have been pushing back, ignoring, hiding come. You really try to think of something positive, but you know they are coming.
"Fuck I am tired of this, tired of the drugs." Having to live your like on a schedule. Every 4 hours.
And if you miss a dose ,then the rest of the day is lost. And not only is the day lost, but you are to.
Having to take a pill to get 5 hours of sleep.
Taking a pill to make your dick work.
I get up to go to the kitchen , I am so stiff...
I am back in my chair, mindlessly watching TV.
Slowly the stiffness goes away. But now my feet are doing their little dance of joy.
I look down at my feet and think " this is my new reality".
Michael J. Fox is getting closer. He's knocking on my door.
I look over at Cheryl sitting there beside me, she is lost in Facebook.
God.....I love her. I would hate to think where I would be, if not for her.
She has not a clue of the war next to her. I should tell her , but why have two people miserable.
I am getting more tired by the minute, but now it is also mentally
Then it hits
You know, the line .Why me.... I don't deserve this....
The one our parents used to yell at us about .
"Stop feeling sorry for yourself , and go outside"
Now the Sadness if full on .
Today this is a moderate sadness . I have had worse.
I rank them on a scale of 1 to 10
Where, 1 is "I am tired" to a 10, is "fuck I woke up"
I must say, not once have I thought about doing something stupid.
Even the one time I was at a 10.
For I know this will go away. sometimes it only lasts a day, or an evening.
Sometimes a couple of days. The worse was two weeks. But you are never sure for how long
This is only Inconvenient .
This somewhere in the lower middle a three or a five.
I just want to go to bed, but it's only 8:30
Cheryl asks me what do you want to watch next.
"I don't know" I reply
I just start another PVR show.
If Cheryl does know what is going on in me right now. She does not say so.
One of the things I could really use right now is a simple hug, and a "I love you".
I know that's not coming unless I ask for it, she doesn't know, and if I asked then she would know.
As well if you ask for it, it loses it's effectiveness.
I should tell her. But I don't. Why. I guess I am still hoping for that hug.
I really should tell her.
Over the last two years. I have noticed a pattern.
I have the same thoughts every time.
I want to escape, Spend sometime doing anything else.
Something I can get lost in. I pick up the tablet. start a game play a few hands ,put it down.
The TV show is predictable.
No... what I need is SEX.. Aggressive , Passionate, no inhibitions. SEX. All day long type of sex .
One of the other things I notice about, when I am feeling sad. Is I always think of sex.
First I fantasize about the things I would like to do. Nothing to kinky,
And the only one I fantasize about is Cheryl.
I really do love her a lot.
Or maybe golf.
I really should talk to a therapist
As much as I try to think of something else. My thoughts keep coming back to sex.
Must be the remnants of the Meripex side effects. The doctor told me they would never truly go away.
My everyday, once or twice a week sex life with Cheryl is good. And I am happy (when not sad)
But when I am sad, I tend to focus on sex more.
It becomes my focus. I try not to let it. But it does.
Prior to the PD. I thought I was a normal guy. I would masturbate once a week
But after the incident with the Meripex and the OCD and Hyper-sexuality . And Cheryl's belief I am still addicted to porn.
I fell guilty about it, and I don't do it as often. It doesn't feel the same.
It's 10:30 pm
By the way my skin is still tingling
I wonder. The self doubt creeps in. Do I still turn her on. did I ever turn her on.
It's not fair, I should not be thinking this way. But I can't help it.
I really should not be thinking this way, I know she loves me.I know she is still in love with me.
She definitely deserves better than this.
After all it is not her fault I have PD
Why is it when we are angry at something we can not control, or yell at, or stop. We deflect that anger on to the person closest to us.
Finally I go to bed. I hope, I will wake up and I hope everything will be back to normal.
I wake up. It's 4 am .
I have also noticed that my sleep is disturbed during theses times.
Well it is still with me. I go play on the tablet until it is time to go to the gym. I
Physically I feel fine, the tingling has gone. I have a good work out.
The work out helps loosen things physically..... BUT
I still don't feel right .
I go to work . Go to my appointments. Call and talk to my clients and possible clients.
Again I should be happy. I have a job. Most of my clients know about the PD. I can come, and go as I please.
The next night the same thing. No sleep. which makes matters worse.
Thinking back on the week that was. It just sort of happened.
No one is aware of the Sadness. Except for maybe Jean.
We had a dinner meeting. Jean stayed after the rest had gone. We talked , I made a comment and smiled. She said it was nice to see you smile. I think she can tell. I thought I was hiding it.
I have been trying to recall events , but it is just a blur.
The sadness stayed with me for the rest of the week. even when I went golfing, it was there.
Friday night we both are tired. I think about asking if I should take the pill. Then decided against it.
We go to sleep.
Saturday we go to the Kingston Market. I don't feel that bad. But still don't feel good.
Saturday night. We went out to Cheryl's sister's place. Got home around 11:30.
I know Cheryl assumes we are having sex. I take a sleeping pill. Meaning I don't want to have sex.
Cheryl looks at me funny. We go to sleep, nothing is said.
Sunday: I am up at 6 am.
Okay somethings different.
I go to dad's, and put a coat of primer on the bedroom walls.
Then it hits me. I feel different.
I do not know how to explain it. Not the cliched "a cloud has be lifted" .
Just different.brighter, lighter.
We have sex that night, and Monday night.
I really enjoy it. I get into the event.
I feel about as normal as a Parkie can
Once again it has passed.
It will come again. I do not know if there is a trigger.
Or it just builds up over time, and then erupts.
It is now Tuesday. I stated this blog on Friday morning.
I don't know if I will ever post this.
I just wanted to put it down on paper. Sort of therapy.
I guess I hoped that by putting in paper I would get better.
I don't know if this will see the light day.
But I do know it will happen again.
Epilogue : The date is June 7, 2018
Last week I had started to get that feeling again. Like I said I do not know the trigger.
It started in the afternoon. I am home for the evening. Being a night time coach potato.
My eyes are starting water." Fuck " Not this time . All the same old thoughts are trying to creep in.
I decide on a different tactic. I stand up, I reach for Cheryl. I give her a hug. I tell her what is happening.
I still wake up earlier than the alarm. The feeling is still there , but not as strong.
By noon, I pause and do an inventory. The feeling is gone.
I would love to be able to say there was something I did.
But no. I know it was the fact that I did not try to go it alone.
It was the look of "I wish there was something I could do for you" I saw in Cheryl's face.
That look of "I love you".
I am not in this alone , and as much as I think I am protecting the ones I love. I am not.
We all need someone to talk to.
Everyone needs a helping hand ,once in a while. Even if it's only to hold the Kleenex.
Remember IT'S ONLY INCONVENIENT
June 21, 2018
August 19, 2018
.
The Sadness.
Like I said I had no intention to publish this blog
But recent posting on the Parkinson Chat group and some high profile deaths.
Made me think.
If I could, by putting this out there convince one person to continue to fight .
I know when you are in the middle of it, it can seem like there is no door out. No light.
But there is.
YOU JUST HAVE TO LET THE LIGHT IN.
Only a crack is needed
I had originally wrote this blog back in May
I had no intention to publish it.
It was intended to be just a journal entry.
It can come on at any time.
Tuesday, May 15, 7:30 pm
We had one of the best days in business we ever had.
I had just confirmed, one order for 7 copiers, and I had sold another to a different client.
The Parkinson's dinner was moving along . We have sold out .
I have received most of the money .
I had a golf date on Friday.
Life seem pretty good. I should be happy .Ya think!!!
So it's around 8:30 pm (I took my last pills of the day at 6 pm)
I am sitting on the couch watching something can't even remember what.
And the Sadness comes
It starts with tears. I am not crying, but my eyes start to water.
I know whats coming.
There is something different. A feeling. Not a physical feeling. But one inside me.
Then my skin starts to tingle (no other word to describe it ). This happens sometimes when the meds are not kicking in as well as they should be.
You know the feeling you get when your foot or hand goes to sleep, or the your skin feels when you have the flu.
Well for me that tingle is over every inch of my body.
Then all the thoughts you have been pushing back, ignoring, hiding come. You really try to think of something positive, but you know they are coming.
"Fuck I am tired of this, tired of the drugs." Having to live your like on a schedule. Every 4 hours.
And if you miss a dose ,then the rest of the day is lost. And not only is the day lost, but you are to.
Having to take a pill to get 5 hours of sleep.
Taking a pill to make your dick work.
I get up to go to the kitchen , I am so stiff...
I am back in my chair, mindlessly watching TV.
Slowly the stiffness goes away. But now my feet are doing their little dance of joy.
I look down at my feet and think " this is my new reality".
Michael J. Fox is getting closer. He's knocking on my door.
I look over at Cheryl sitting there beside me, she is lost in Facebook.
God.....I love her. I would hate to think where I would be, if not for her.
She has not a clue of the war next to her. I should tell her , but why have two people miserable.
I am getting more tired by the minute, but now it is also mentally
Then it hits
You know, the line .Why me.... I don't deserve this....
The one our parents used to yell at us about .
"Stop feeling sorry for yourself , and go outside"
Now the Sadness if full on .
Today this is a moderate sadness . I have had worse.
I rank them on a scale of 1 to 10
Where, 1 is "I am tired" to a 10, is "fuck I woke up"
I must say, not once have I thought about doing something stupid.
Even the one time I was at a 10.
For I know this will go away. sometimes it only lasts a day, or an evening.
Sometimes a couple of days. The worse was two weeks. But you are never sure for how long
This is only Inconvenient .
This somewhere in the lower middle a three or a five.
I just want to go to bed, but it's only 8:30
Cheryl asks me what do you want to watch next.
"I don't know" I reply
I just start another PVR show.
If Cheryl does know what is going on in me right now. She does not say so.
One of the things I could really use right now is a simple hug, and a "I love you".
I know that's not coming unless I ask for it, she doesn't know, and if I asked then she would know.
As well if you ask for it, it loses it's effectiveness.
I should tell her. But I don't. Why. I guess I am still hoping for that hug.
I really should tell her.
Over the last two years. I have noticed a pattern.
I have the same thoughts every time.
I want to escape, Spend sometime doing anything else.
Something I can get lost in. I pick up the tablet. start a game play a few hands ,put it down.
The TV show is predictable.
No... what I need is SEX.. Aggressive , Passionate, no inhibitions. SEX. All day long type of sex .
One of the other things I notice about, when I am feeling sad. Is I always think of sex.
First I fantasize about the things I would like to do. Nothing to kinky,
And the only one I fantasize about is Cheryl.
I really do love her a lot.
Or maybe golf.
I really should talk to a therapist
As much as I try to think of something else. My thoughts keep coming back to sex.
Must be the remnants of the Meripex side effects. The doctor told me they would never truly go away.
My everyday, once or twice a week sex life with Cheryl is good. And I am happy (when not sad)
But when I am sad, I tend to focus on sex more.
It becomes my focus. I try not to let it. But it does.
Prior to the PD. I thought I was a normal guy. I would masturbate once a week
But after the incident with the Meripex and the OCD and Hyper-sexuality . And Cheryl's belief I am still addicted to porn.
I fell guilty about it, and I don't do it as often. It doesn't feel the same.
It's 10:30 pm
By the way my skin is still tingling
I wonder. The self doubt creeps in. Do I still turn her on. did I ever turn her on.
It's not fair, I should not be thinking this way. But I can't help it.
I really should not be thinking this way, I know she loves me.I know she is still in love with me.
She definitely deserves better than this.
After all it is not her fault I have PD
Why is it when we are angry at something we can not control, or yell at, or stop. We deflect that anger on to the person closest to us.
Finally I go to bed. I hope, I will wake up and I hope everything will be back to normal.
I wake up. It's 4 am .
I have also noticed that my sleep is disturbed during theses times.
Well it is still with me. I go play on the tablet until it is time to go to the gym. I
Physically I feel fine, the tingling has gone. I have a good work out.
The work out helps loosen things physically..... BUT
I still don't feel right .
I go to work . Go to my appointments. Call and talk to my clients and possible clients.
Again I should be happy. I have a job. Most of my clients know about the PD. I can come, and go as I please.
The next night the same thing. No sleep. which makes matters worse.
Thinking back on the week that was. It just sort of happened.
No one is aware of the Sadness. Except for maybe Jean.
We had a dinner meeting. Jean stayed after the rest had gone. We talked , I made a comment and smiled. She said it was nice to see you smile. I think she can tell. I thought I was hiding it.
I have been trying to recall events , but it is just a blur.
The sadness stayed with me for the rest of the week. even when I went golfing, it was there.
Friday night we both are tired. I think about asking if I should take the pill. Then decided against it.
We go to sleep.
Saturday we go to the Kingston Market. I don't feel that bad. But still don't feel good.
Saturday night. We went out to Cheryl's sister's place. Got home around 11:30.
I know Cheryl assumes we are having sex. I take a sleeping pill. Meaning I don't want to have sex.
Cheryl looks at me funny. We go to sleep, nothing is said.
Sunday: I am up at 6 am.
Okay somethings different.
I go to dad's, and put a coat of primer on the bedroom walls.
Then it hits me. I feel different.
I do not know how to explain it. Not the cliched "a cloud has be lifted" .
Just different.brighter, lighter.
We have sex that night, and Monday night.
I really enjoy it. I get into the event.
I feel about as normal as a Parkie can
Once again it has passed.
It will come again. I do not know if there is a trigger.
Or it just builds up over time, and then erupts.
It is now Tuesday. I stated this blog on Friday morning.
I don't know if I will ever post this.
I just wanted to put it down on paper. Sort of therapy.
I guess I hoped that by putting in paper I would get better.
I don't know if this will see the light day.
But I do know it will happen again.
Epilogue : The date is June 7, 2018
Last week I had started to get that feeling again. Like I said I do not know the trigger.
It started in the afternoon. I am home for the evening. Being a night time coach potato.
My eyes are starting water." Fuck " Not this time . All the same old thoughts are trying to creep in.
I decide on a different tactic. I stand up, I reach for Cheryl. I give her a hug. I tell her what is happening.
I still wake up earlier than the alarm. The feeling is still there , but not as strong.
By noon, I pause and do an inventory. The feeling is gone.
I would love to be able to say there was something I did.
But no. I know it was the fact that I did not try to go it alone.
It was the look of "I wish there was something I could do for you" I saw in Cheryl's face.
That look of "I love you".
I am not in this alone , and as much as I think I am protecting the ones I love. I am not.
We all need someone to talk to.
Everyone needs a helping hand ,once in a while. Even if it's only to hold the Kleenex.
Remember IT'S ONLY INCONVENIENT
June 21, 2018
August 19, 2018
.
Sunday, 24 June 2018
I am here, and I matter
If you feel really strongly about something.......
My name is Randy Wilcox and I am a PARKIE.
I was never one who wanted to join the old boys clubs.
I actually avoided the Board of Trade events, was just as happy to not belong to the Rotary Club, the Y"s Men Club, etc. While I know who some of the members are, and do business with a few, and they do a lot of good work for the community, my personal worth was not based on what club I was part of and who I knew from those clubs. I have always felt like I did not fit in.
I was never one to get politically involved. I pretty much ignored anything political.
However I did, and do, continue to vote.
I found for the most part the decisions that were made by our Federal and Provincial politicians did not directly affect me. Business wise and personally I have flown pretty much under the radar.
I am a partner at Southern New Brunswick Office Equipment Ltd. (SNB). We sell and service Toshiba photocopiers and Ericsson Telephone systems. We have been in business for 20 years. I have over 400 telephone systems in place that we look after.
But this is not about business, this is personal.
February 13, 2013 4 pm, my life, and the lives of those I love, changed.
As I mentioned, I got involved because I reached out for help, and no one answered .
In New Brunswick no one knows how many people are living with Parkinson's disease.
If you ask the neurologists. they don' t know.
If you ask Parkinson's Canada, they don't know.
If you ask the Province, they don't care.
The best guess is based on figures. It is estimated that there are a little under 10,000 people living with Parkinson's in the three Atlantic provinces. Based on a rough guess, there would be approximately 4,000 to 5,000 people with Parkinson's in New Brunswick. Five thousand people, not a lot when you consider the total province. But I may, or will, be be proven wrong.
BECAUSE NO ONE FUCKING KNOWS ........
But Parkinson's does not only effect the individuals, it effects everyone in the family unit.
The wives, husbands who get to watch the ones they love slowly slip away. Watch their future dreams go with them. The sons and daughters who now have to put their lives on hold to tend to a parent.
Parkinson's changes lives in ways that no one on the outside can even imagine. Don't get me wrong, there are plenty of awful things out there. But Parkinson's does not end. EVER.
It does not go away. There is no cure, no relief. I was diagnosed at 54. I fully expect to live until I am in my 80's. But what life will I have at 80? Worse, what life will my lover have?
Okay do I have your attention?
In New Brunswick there are no programs to assist those living with Parkinson's. There are no programs to assist the caregiver or the families. Yes the provincial drug plan does cover most of the medications for those without Blue Cross or similar drug plans, but what we need is a full time office responsible to those dealing with Parkinson's. Someone who can make sure each community in New Brunswick has a support network; that information is readily available to newly diagnosed patients; that there are support groups available; that there are relevant exercise programs available to all; to make sure the caregivers have the necessary support network.
Did you know that Nova Scotia has a provincially funded organization dedicated to Caregivers
offering such things as Support Groups, Help lines, information on temporary relief? Not just for Parkinson's, but for anyone who needs it.
New Brunswick has nothing.
The Provincial government has been pushing for at-home care for several years now. That is fine, in my later years I would rather be at home. But how about taking some of the money the province has saved, and giving it back to the unpaid caregivers in the form of support?
Currently Parkinson's is supported by volunteers in the local communities. There is no one group working for New Brunswick's Parkinson's community There are support groups in Fredericton, Saint John, Sussex, and I think in Moncton and the Miramichi. But the groups in Sussex, and Fredericton are aligned to the Michael J. Fox organization, and Saint John and the Miramichi are with Parkinson's Canada. Let me call it as I see it. Parkinson's Canada and the Fox group, while providing support materials, are primarily interested in fundraising.
Right now there is a wonderful dedicated young lady, a physio therapist, running around the province trying to establish an exercise program for Parkies. All on her own time and with the full knowledge that at any time the province can stop it.
One of the things I noticed early on while working to fund raise is the sheer might of the Hospital Foundation. They are the fundraising bully on the block. Of all the Billions of dollars they have raised over the years not one penny has been set aside for Parkinson's. A movement disorder clinic in Saint John or Fredericton is desperately needed. This would probably cost less than any of the MRI's or whatever machine they need this year.
There is only a PART time Neuronurse assigned for Monday's for Parkinson's. One day a week to screen patients, provide information about support, point the person to the people who can help. One nurse, one day...
There is a provincial election coming in the fall.
Please help me a least get the word "Parkinson's" mentioned.
Not for fundraising, but to bring awareness to the government.
HEY!!
I am here and I need a little help!
And remember sometimes...
IT'S VERY INCONVENIENT
Please share, send, tell, link as many people as you can.
Like I said, there is no organized Parkinson's group.
Let's get Parkinson's mentioned at the Political table.
My name is Randy Wilcox and I am a PARKIE.
I was never one who wanted to join the old boys clubs.
I actually avoided the Board of Trade events, was just as happy to not belong to the Rotary Club, the Y"s Men Club, etc. While I know who some of the members are, and do business with a few, and they do a lot of good work for the community, my personal worth was not based on what club I was part of and who I knew from those clubs. I have always felt like I did not fit in.
I was never one to get politically involved. I pretty much ignored anything political.
However I did, and do, continue to vote.
I found for the most part the decisions that were made by our Federal and Provincial politicians did not directly affect me. Business wise and personally I have flown pretty much under the radar.
I am a partner at Southern New Brunswick Office Equipment Ltd. (SNB). We sell and service Toshiba photocopiers and Ericsson Telephone systems. We have been in business for 20 years. I have over 400 telephone systems in place that we look after.
But this is not about business, this is personal.
February 13, 2013 4 pm, my life, and the lives of those I love, changed.
As I mentioned, I got involved because I reached out for help, and no one answered .
In New Brunswick no one knows how many people are living with Parkinson's disease.
If you ask the neurologists. they don' t know.
If you ask Parkinson's Canada, they don't know.
If you ask the Province, they don't care.
The best guess is based on figures. It is estimated that there are a little under 10,000 people living with Parkinson's in the three Atlantic provinces. Based on a rough guess, there would be approximately 4,000 to 5,000 people with Parkinson's in New Brunswick. Five thousand people, not a lot when you consider the total province. But I may, or will, be be proven wrong.
BECAUSE NO ONE FUCKING KNOWS ........
But Parkinson's does not only effect the individuals, it effects everyone in the family unit.
The wives, husbands who get to watch the ones they love slowly slip away. Watch their future dreams go with them. The sons and daughters who now have to put their lives on hold to tend to a parent.
Parkinson's changes lives in ways that no one on the outside can even imagine. Don't get me wrong, there are plenty of awful things out there. But Parkinson's does not end. EVER.
It does not go away. There is no cure, no relief. I was diagnosed at 54. I fully expect to live until I am in my 80's. But what life will I have at 80? Worse, what life will my lover have?
Okay do I have your attention?
In New Brunswick there are no programs to assist those living with Parkinson's. There are no programs to assist the caregiver or the families. Yes the provincial drug plan does cover most of the medications for those without Blue Cross or similar drug plans, but what we need is a full time office responsible to those dealing with Parkinson's. Someone who can make sure each community in New Brunswick has a support network; that information is readily available to newly diagnosed patients; that there are support groups available; that there are relevant exercise programs available to all; to make sure the caregivers have the necessary support network.
Did you know that Nova Scotia has a provincially funded organization dedicated to Caregivers
offering such things as Support Groups, Help lines, information on temporary relief? Not just for Parkinson's, but for anyone who needs it.
New Brunswick has nothing.
The Provincial government has been pushing for at-home care for several years now. That is fine, in my later years I would rather be at home. But how about taking some of the money the province has saved, and giving it back to the unpaid caregivers in the form of support?
Currently Parkinson's is supported by volunteers in the local communities. There is no one group working for New Brunswick's Parkinson's community There are support groups in Fredericton, Saint John, Sussex, and I think in Moncton and the Miramichi. But the groups in Sussex, and Fredericton are aligned to the Michael J. Fox organization, and Saint John and the Miramichi are with Parkinson's Canada. Let me call it as I see it. Parkinson's Canada and the Fox group, while providing support materials, are primarily interested in fundraising.
Right now there is a wonderful dedicated young lady, a physio therapist, running around the province trying to establish an exercise program for Parkies. All on her own time and with the full knowledge that at any time the province can stop it.
One of the things I noticed early on while working to fund raise is the sheer might of the Hospital Foundation. They are the fundraising bully on the block. Of all the Billions of dollars they have raised over the years not one penny has been set aside for Parkinson's. A movement disorder clinic in Saint John or Fredericton is desperately needed. This would probably cost less than any of the MRI's or whatever machine they need this year.
There is only a PART time Neuronurse assigned for Monday's for Parkinson's. One day a week to screen patients, provide information about support, point the person to the people who can help. One nurse, one day...
There is a provincial election coming in the fall.
Please help me a least get the word "Parkinson's" mentioned.
Not for fundraising, but to bring awareness to the government.
HEY!!
I am here and I need a little help!
And remember sometimes...
IT'S VERY INCONVENIENT
Please share, send, tell, link as many people as you can.
Like I said, there is no organized Parkinson's group.
Let's get Parkinson's mentioned at the Political table.
Thursday, 14 June 2018
Being Positive
"How do you do it."
I get that question from time to time.
They (could be any one) are talking about staying positive.
What got me thinking of this was a post in Facebook.
The person was venting. What all of us Parkies, at one point or another are want to do.
The rant usually starts with how tired we are. Why was I chosen to have this?
It never seems to end, what has it done to our relationships?
Where did the person I once was go? Who is this stranger in my broken body?
You get the picture.
What do you say back to this person?
"Chin up , yes... you have an incurable, degenerative disease. But things will get better."
Yeah right...
So how do you do it?
I think it is a personal thing. No one can give you the magic positivity pill.
It is so easy to just give up.
For the ladies, I imagine it's a, big heavy blanket, 3 tubs of chocolate chip cookie dough ice cream,
and a dozen romantic movies.
For the guys, it's a pile Bourne videos, a pizza, and 2 bottles of whiskey.
Either one of those sounds good, but I hate whiskey.
And we have all thought of escaping, or hiding at one point. But that won't work .
You still have to take the meds. No matter how hard you try, it follows you.
And the kids always find you.
So....
Ready or not, here are some things I (only my opinion) think will help to keep you positive.
First...
It's like any thing else, you just have to do it.
Be as positive as you can. Smile even when it hurts.
Like any other chore. You may not want to do it.
But you just have to do it.
It's not easy. You really have to work at it.
Even when it seems so fake, so insincere.
There is a term in sports " Fake it until you make it". If you say it enough, you might even start to believe it.
As much as people want to empathize with you when they ask "How are you doing ?",
most times it is because they don't know what to say. They definitely do not want to hear all the things that you, as a Parkie, are going through.
A simple "I am fine" will do. I have found nothing brings you down faster then listing everything that is going on.
It sounds too simple, and no you will not turn in to a positive person instantly. It won't make the symptoms go away.
But if you do it enough you actually start to feel it.
So that's it.
NOT!!
Being a positive person is more than just saying to yourself.... I am positive.
Your life has changed. Things I once took for granted I now struggle with.
But if anything, I now appreciate things a lot more.
You have to live in the moment. Not just live in the moment, but be in the moment.
Stop some time while the moment is happening to look around, take stock.
No mater what you are doing. Even the most simplest of events.
Or the biggest events.
Regardless of how I feel, even when I am in the middle of a sadness, I stop and look around at the moment.
Watching a humming bird outside the window. Looking at the dawn as I am coming home from the gym. Watching Cheryl sleep. Sounds creepy, but I fall in love with her every time I do.
Listening to a group of friends talk about the last round of golf.
Be in that moment. It will never come again. And that is something Parkinson's, or anything else, can not take from you.
It is easy to say "make every thing a moment". It does not work that way. Life does not work that way. There will be bad moments. Be there as well.
SAY YES
Say yes, as many times as you can.
If someone asks for assistance, you are asked to attend a function. Say yes.
Don't be afraid to go out of your comfort zone. What have you got to lose?
Ballet is not my thing, but I was asked and I went (it was awful). I don't get modern dance.
This will most likely end up coming back to haunt me.
But say yes. You might actually enjoy it.
Try new things. Just because you have not tried something is not a reason not to do it.
Yes you may suck at it, you will most likely embarrass yourself. But so what.
Every one needs a good laugh once in a while.
Deal with the bad things.
Don't ignore them. They won't go away if you turn your back to them. Everyone has had bad things happen to them. Death of a loved one, marriage break-up, Parkinson's. The list is long.
Some things take longer to work their way through. And some things never go away. But acknowledge the bad. Deal with it. Find out what you have to do to (in the case of Parkinson's) slow the bastard down.
Know what you have to do. Learn everything you can. Ask a lot of questions.
Cry once in a while. Cry with someone. Cry for someone.
Before I get too preachy,
To late...
Take a long look at yourself.
Take stock, be honest. Again, Parkinson's changes you, and continues to change you.
I know we all change over time. Look at the good and the bad.
Not just physical, but mentally as well.
I know I have changed my outlook. Things I would never have considered before, I would do now.
My attitude to a lot of things has changed. For example, one of my new motto's is "it's only money".
Don't get me wrong, the bills still have to be paid. But if I have the chance to do something unique, like taking my wife to a dream dinner at Chef Michael Smith's restaurant on PEI, it's a no-brainer.
There is not much I would not try. Except maybe bungee jumping. Me and heights don't get along, but I would do zip lines.
Take a look at your inhibitions. Are they something, that if the right situation came along, would they hold you back? It's okay if they will. That is what makes you, You.
"Be the person you are today, not the person you were" Perkie Parkie.
Accept the person you are today.
Like I have said all along, I am extremely lucky. Yes I have Parkinson's.
But ...
I can still do my job.
I can still put on my underwear myself'.
I still do the things I want to do.
It's fine for me to sit here and says these things. I am not saying I have all the answers and if you follow what I say it will make you a positive person.
It's okay to be sad once in a while. To grieve the person I was.
But I think I am a better person for the experience.
Remember IT'S ONLY INCONVENIENT
Now where did I put those movies, and where is the ice cream scoop.
I get that question from time to time.
They (could be any one) are talking about staying positive.
What got me thinking of this was a post in Facebook.
The person was venting. What all of us Parkies, at one point or another are want to do.
The rant usually starts with how tired we are. Why was I chosen to have this?
It never seems to end, what has it done to our relationships?
Where did the person I once was go? Who is this stranger in my broken body?
You get the picture.
What do you say back to this person?
"Chin up , yes... you have an incurable, degenerative disease. But things will get better."
Yeah right...
So how do you do it?
I think it is a personal thing. No one can give you the magic positivity pill.
It is so easy to just give up.
For the ladies, I imagine it's a, big heavy blanket, 3 tubs of chocolate chip cookie dough ice cream,
and a dozen romantic movies.
For the guys, it's a pile Bourne videos, a pizza, and 2 bottles of whiskey.
Either one of those sounds good, but I hate whiskey.
And we have all thought of escaping, or hiding at one point. But that won't work .
You still have to take the meds. No matter how hard you try, it follows you.
And the kids always find you.
So....
Ready or not, here are some things I (only my opinion) think will help to keep you positive.
First...
It's like any thing else, you just have to do it.
Be as positive as you can. Smile even when it hurts.
Like any other chore. You may not want to do it.
But you just have to do it.
It's not easy. You really have to work at it.
Even when it seems so fake, so insincere.
There is a term in sports " Fake it until you make it". If you say it enough, you might even start to believe it.
As much as people want to empathize with you when they ask "How are you doing ?",
most times it is because they don't know what to say. They definitely do not want to hear all the things that you, as a Parkie, are going through.
A simple "I am fine" will do. I have found nothing brings you down faster then listing everything that is going on.
It sounds too simple, and no you will not turn in to a positive person instantly. It won't make the symptoms go away.
But if you do it enough you actually start to feel it.
So that's it.
NOT!!
Being a positive person is more than just saying to yourself.... I am positive.
Your life has changed. Things I once took for granted I now struggle with.
But if anything, I now appreciate things a lot more.
You have to live in the moment. Not just live in the moment, but be in the moment.
Stop some time while the moment is happening to look around, take stock.
No mater what you are doing. Even the most simplest of events.
Or the biggest events.
Regardless of how I feel, even when I am in the middle of a sadness, I stop and look around at the moment.
Watching a humming bird outside the window. Looking at the dawn as I am coming home from the gym. Watching Cheryl sleep. Sounds creepy, but I fall in love with her every time I do.
Listening to a group of friends talk about the last round of golf.
Be in that moment. It will never come again. And that is something Parkinson's, or anything else, can not take from you.
It is easy to say "make every thing a moment". It does not work that way. Life does not work that way. There will be bad moments. Be there as well.
SAY YES
Say yes, as many times as you can.
If someone asks for assistance, you are asked to attend a function. Say yes.
Don't be afraid to go out of your comfort zone. What have you got to lose?
Ballet is not my thing, but I was asked and I went (it was awful). I don't get modern dance.
This will most likely end up coming back to haunt me.
But say yes. You might actually enjoy it.
Try new things. Just because you have not tried something is not a reason not to do it.
Yes you may suck at it, you will most likely embarrass yourself. But so what.
Every one needs a good laugh once in a while.
Deal with the bad things.
Don't ignore them. They won't go away if you turn your back to them. Everyone has had bad things happen to them. Death of a loved one, marriage break-up, Parkinson's. The list is long.
Some things take longer to work their way through. And some things never go away. But acknowledge the bad. Deal with it. Find out what you have to do to (in the case of Parkinson's) slow the bastard down.
Know what you have to do. Learn everything you can. Ask a lot of questions.
Cry once in a while. Cry with someone. Cry for someone.
Before I get too preachy,
To late...
Take a long look at yourself.
Take stock, be honest. Again, Parkinson's changes you, and continues to change you.
I know we all change over time. Look at the good and the bad.
Not just physical, but mentally as well.
I know I have changed my outlook. Things I would never have considered before, I would do now.
My attitude to a lot of things has changed. For example, one of my new motto's is "it's only money".
Don't get me wrong, the bills still have to be paid. But if I have the chance to do something unique, like taking my wife to a dream dinner at Chef Michael Smith's restaurant on PEI, it's a no-brainer.
There is not much I would not try. Except maybe bungee jumping. Me and heights don't get along, but I would do zip lines.
Take a look at your inhibitions. Are they something, that if the right situation came along, would they hold you back? It's okay if they will. That is what makes you, You.
"Be the person you are today, not the person you were" Perkie Parkie.
Accept the person you are today.
Like I have said all along, I am extremely lucky. Yes I have Parkinson's.
But ...
I can still do my job.
I can still put on my underwear myself'.
I still do the things I want to do.
It's fine for me to sit here and says these things. I am not saying I have all the answers and if you follow what I say it will make you a positive person.
It's okay to be sad once in a while. To grieve the person I was.
But I think I am a better person for the experience.
Remember IT'S ONLY INCONVENIENT
Now where did I put those movies, and where is the ice cream scoop.
Sunday, 27 May 2018
"We're going to have a dinner"
It's funny, you would think that after 30 years in sales, making
pitches to individuals and groups, I would be comfortable in front of a
crowd.
Not....
On May 24, 2018 the Saint John Chapter of Parkinson's Canada held it's Annual Fundraiser Dinner.
I have no idea if our little dinner is on the grand scale, small scale, or somewhere in between.
This is where they flash the " 4 Years ago " on the bottom of the TV screen.
This is a small town city. If you ever attend the "in" events, Board of Trade, Hospital Fundraisers , Y's Men Club etc. you see basically the same people. I was never one of them. Early on in my company's life, while I knew who these people were, they were just another client to me.
I wasn't asked to the events. If there was an event I had wanted to attend most likely it was sold out.
I never really tried to fit in. I was always just Randy the copier/phone guy. Through my connection with the Family Resource Centre I was able to attend a BCAPI (Business Community Anti-Poverty Initiative) event. The one name that kept coming up was Bill Gale, as he was the main driving force behind this organization.
When I was introduced to the existing board of the local Chapter, one of the names that stood out was Bill Gale. Bill also attended the support groups. One day in a voice you could barely hear Bill said to me "we are going to have a dinner." So I guess we have a dinner. Doing something for the first time is exciting, and satisfying. I went to the membership and asked for volunteers. With Bill's help we managed to sell about 120 tickets. With Jean Driscoll's help we got a lot of Silent Auction items.
That first year we raised over $13,000. All that money went to the local. The second year we raised just over $9,000, but we were competing against the East Coast Music Awards that night.
This year we actually had guests, but did I acknowledge them?? NO!
Did I ask for them to say something?? NO!
I carefully wrote out a script of what to say. Threw it out the window.
I must say, third time around I actually had time to enjoy it.
Cheryl and Dori worked the front table.
Jean's daughters sold 50/50 tickets.
I just wondered about, thanking people.
There is always so much negativity involved with Parkinson's. It is really uplifting to be a part of something positive. To see people having a good time, supporting a good cause. Maybe next year I will look at getting an experienced emcee, and speaker.
This blog has a tendency to be a lot of woe is me, mainly because I remember the bad stuff. What is not said enough is the fact that most days are great, that most days just go by. The same for everyone else.
As to the total amount raised this year, $12,500.
To everyone who helped in this endeavor,
THANK YOU!
To everyone who donated,
THANK YOU!
And remember
IT'S ONLY INCONVENIENT
Not....
On May 24, 2018 the Saint John Chapter of Parkinson's Canada held it's Annual Fundraiser Dinner.
I have no idea if our little dinner is on the grand scale, small scale, or somewhere in between.
This is where they flash the " 4 Years ago " on the bottom of the TV screen.
This is a small town city. If you ever attend the "in" events, Board of Trade, Hospital Fundraisers , Y's Men Club etc. you see basically the same people. I was never one of them. Early on in my company's life, while I knew who these people were, they were just another client to me.
I wasn't asked to the events. If there was an event I had wanted to attend most likely it was sold out.
I never really tried to fit in. I was always just Randy the copier/phone guy. Through my connection with the Family Resource Centre I was able to attend a BCAPI (Business Community Anti-Poverty Initiative) event. The one name that kept coming up was Bill Gale, as he was the main driving force behind this organization.
When I was introduced to the existing board of the local Chapter, one of the names that stood out was Bill Gale. Bill also attended the support groups. One day in a voice you could barely hear Bill said to me "we are going to have a dinner." So I guess we have a dinner. Doing something for the first time is exciting, and satisfying. I went to the membership and asked for volunteers. With Bill's help we managed to sell about 120 tickets. With Jean Driscoll's help we got a lot of Silent Auction items.
That first year we raised over $13,000. All that money went to the local. The second year we raised just over $9,000, but we were competing against the East Coast Music Awards that night.
This year we actually had guests, but did I acknowledge them?? NO!
Did I ask for them to say something?? NO!
I carefully wrote out a script of what to say. Threw it out the window.
I must say, third time around I actually had time to enjoy it.
Cheryl and Dori worked the front table.
Jean's daughters sold 50/50 tickets.
I just wondered about, thanking people.
There is always so much negativity involved with Parkinson's. It is really uplifting to be a part of something positive. To see people having a good time, supporting a good cause. Maybe next year I will look at getting an experienced emcee, and speaker.
This blog has a tendency to be a lot of woe is me, mainly because I remember the bad stuff. What is not said enough is the fact that most days are great, that most days just go by. The same for everyone else.
As to the total amount raised this year, $12,500.
To everyone who helped in this endeavor,
THANK YOU!
To everyone who donated,
THANK YOU!
And remember
IT'S ONLY INCONVENIENT
Sunday, 13 May 2018
Sweet Dreams
So
What's new
One the wonderful things of living with PD is that you get all this extra time in the day.
Just imagine the things you can get done if you only had an extra three or four hours every day.
Why you could get in some extra piano practice. You could paint three or four paintings. You could teach yourself to play the guitar, the fiddle, or the drums. You could watch that series on Netflix, you know the one, the one you don't want anybody to know you watch. I am talking about the Cake Wars one. And yes there is a way to remove it from the watched list. It's hard to find things to do at four in the morning that don't make noise.
Sleep is something most of us take for granted. Yes, at some point most of us have had a bout of insomnia. But it usually stopped once whatever we were worried about stopped or went away.
To the Parkie, sleep is to be cherished. To actually make it to the alarm in the morning is to be celebrated.
I was one of those people who, when told by someone they went to the gym a six every morning, responded with a "your nuts". Now I find myself at Spin Class at 5:45 god damn AM.
So now I have added two Zopiclone to my night time routine. Funny how things, after a while become normal. Four o'clock is normal right. I will ask myself, why am I so tired, it's only 10 o'clock. Then I remember oh yeah I was up at four. Just like every one else. Right?
The last visit to the Neurologist, I asked Cheryl to come along. It had been a while since she had come with me and I thought she might have some questions, or observations.
Well, we progressed though the appointment. We talked about the Dyskinesia and dystonia. He did this funny thing where he made me recite the months backwards (try it, it's hard) and my left hand did this funny shaky thingy. My tremor is in my right hand. Hmm ???
So the doctor says, "is there anything else " I say no.
I am not sure if the doctor actually asked her if she had any questions, but up until this point she had said nothing. "What about marijuana" she says, "you know, for sleep " she says. Never even crossed my mind.
I have been sorta reluctant about the whole marijuana thing. Most of all I just didn't want to be stoned (didn't occur to me that if I DID get stoned, I would be asleep) and I was unsure if it would do any good. According to the Neurologist, Cannabis does nothing directly for Parkinson's symptoms. Most people, he says, take the cannabis and feel great for about 2 months (power of suggestion?) then things go back to normal. It will however ease the anxiety that a Parkie can get when the meds wear off and the next dose hasn't kicked in yet. It will however help relax you and help you sleep.
So I received my first shipment of cannabis oil. I have not taken any yet. This is Saturday. I will work it into the night time routine on Monday. According to the literature it will take about 1 to 1.5 hours to take effect. So I should take it around 9 o'clock.
Hopefully I will be able to make the alarm at 5:15.
Got to go to Spin Class you know. God I hate the gym.
But that topic is for another day
So...
GOOD NIGHT EVERYONE
Sweet Dreams
And remember
IT'S ONLY INCONVENIENT
What's new
One the wonderful things of living with PD is that you get all this extra time in the day.
Just imagine the things you can get done if you only had an extra three or four hours every day.
Why you could get in some extra piano practice. You could paint three or four paintings. You could teach yourself to play the guitar, the fiddle, or the drums. You could watch that series on Netflix, you know the one, the one you don't want anybody to know you watch. I am talking about the Cake Wars one. And yes there is a way to remove it from the watched list. It's hard to find things to do at four in the morning that don't make noise.
Sleep is something most of us take for granted. Yes, at some point most of us have had a bout of insomnia. But it usually stopped once whatever we were worried about stopped or went away.
To the Parkie, sleep is to be cherished. To actually make it to the alarm in the morning is to be celebrated.
I was one of those people who, when told by someone they went to the gym a six every morning, responded with a "your nuts". Now I find myself at Spin Class at 5:45 god damn AM.
So now I have added two Zopiclone to my night time routine. Funny how things, after a while become normal. Four o'clock is normal right. I will ask myself, why am I so tired, it's only 10 o'clock. Then I remember oh yeah I was up at four. Just like every one else. Right?
The last visit to the Neurologist, I asked Cheryl to come along. It had been a while since she had come with me and I thought she might have some questions, or observations.
Well, we progressed though the appointment. We talked about the Dyskinesia and dystonia. He did this funny thing where he made me recite the months backwards (try it, it's hard) and my left hand did this funny shaky thingy. My tremor is in my right hand. Hmm ???
So the doctor says, "is there anything else " I say no.
I am not sure if the doctor actually asked her if she had any questions, but up until this point she had said nothing. "What about marijuana" she says, "you know, for sleep " she says. Never even crossed my mind.
I have been sorta reluctant about the whole marijuana thing. Most of all I just didn't want to be stoned (didn't occur to me that if I DID get stoned, I would be asleep) and I was unsure if it would do any good. According to the Neurologist, Cannabis does nothing directly for Parkinson's symptoms. Most people, he says, take the cannabis and feel great for about 2 months (power of suggestion?) then things go back to normal. It will however ease the anxiety that a Parkie can get when the meds wear off and the next dose hasn't kicked in yet. It will however help relax you and help you sleep.
So I received my first shipment of cannabis oil. I have not taken any yet. This is Saturday. I will work it into the night time routine on Monday. According to the literature it will take about 1 to 1.5 hours to take effect. So I should take it around 9 o'clock.
Hopefully I will be able to make the alarm at 5:15.
Got to go to Spin Class you know. God I hate the gym.
But that topic is for another day
So...
GOOD NIGHT EVERYONE
Sweet Dreams
And remember
IT'S ONLY INCONVENIENT
Saturday, 5 May 2018
What makes a Parkie
Well, update on the golf game. I know, you are all waiting breathlessly for this.
I went to the driving range. Wow!!
I guess working out all winter sure does make a difference. I was crushing it!
Played the first round at Sussex Golf Club, shot a 91 (very good for me). I think I will stop now....NOT!
As you may have realized by now, I refer to myself as a Parkie and not a PWP (Person With Parkinson's). This has been a debate among the Parkie community for a long time . What follows is only my opinion. My blog- my opinion.
As part of my job as a "salesman" I have been to a few Nursing Homes and Extended Care Facilities.
Walking through the halls is both heartbreaking and scary. If you talk to anyone with Parkinson's (and people without Parkinson's too) their number one fear is, this is where they will end up. They may not admit it, but deep down inside it is there somewhere. Each time I read or hear the term PWP, I think of the nursing home. PWP is very clinical, and I find it refers more to the condition then to the person with the condition. When I hear PWP I see someone who, while they may still be fighting, has accepted this is the way it will be. To me a PWP will find a reason not to do something. And yes that reason may be valid.
Take Exercise for example. It has been proven over and over again that vigorous exercise will in the short term ease some of the stiffness, and in the long term slow down the progression of Parkinson's. Now, everyone has to find the level of exercise that is right for them. But you definitely have to push yourself in order for the exercise to be effective. You may not be able to bench press 200 lbs, but you can do a bicep curl with 10 or 5 lb dumb bells. You may not be able to take a spin class (I highly recommend it for any one), but you can do 10 to 15 minutes a day on a stationary bike.
God, I sound like such an arrogant snob. I don't mean to.
A Parkie is someone who will take the challenge of Day to Day living personally. Someone who will do everything possible to slow down the progression of Parkinson's. Not just with exercise for the body, but also exercises for the brain. At the conference we met Don Lawson. He has lived with Parkinson's for about 20 years. He and his wife learn a new card game every 6 months to a year, and they play it every evening. If they don't have friends over, they play it by themselves. He finds it keeps his mind sharp.
Parkies' don't as a rule look at the weather report, we simply get up, look outside and say "I need big boots today" or "Cool! Shorts and tee".
Parkies' are aware of their bodies and Parkinson's, realizing when something is new, what does it effect and how to deal with it.
A Parkie does not let the symptoms of Parkinson's deter them from at least trying something. A Parkie looks for new adventures. Two People I look up to the most in the Parkie world are
Natasha McCarthy, her blog is "A Broken Body's Journey " http://natashachronicles.blogspot.ca/
and the other is Allison Smith or "The Perky Parkie." They are the ones I think of when I need to give myself a kick in the pants. They are the ones who keep me positive. A Parkie looks for the positive in any situation and or person.
Don't get me wrong, I will be a PWP someday. But not tomorrow, or the day after that.
For today I am THE RANDY PARKIE
Remember IT'S ONLY INCONVENIENT
ps. I start my Piano lessens on Wednesday.
I went to the driving range. Wow!!
I guess working out all winter sure does make a difference. I was crushing it!
Played the first round at Sussex Golf Club, shot a 91 (very good for me). I think I will stop now....NOT!
As you may have realized by now, I refer to myself as a Parkie and not a PWP (Person With Parkinson's). This has been a debate among the Parkie community for a long time . What follows is only my opinion. My blog- my opinion.
As part of my job as a "salesman" I have been to a few Nursing Homes and Extended Care Facilities.
Walking through the halls is both heartbreaking and scary. If you talk to anyone with Parkinson's (and people without Parkinson's too) their number one fear is, this is where they will end up. They may not admit it, but deep down inside it is there somewhere. Each time I read or hear the term PWP, I think of the nursing home. PWP is very clinical, and I find it refers more to the condition then to the person with the condition. When I hear PWP I see someone who, while they may still be fighting, has accepted this is the way it will be. To me a PWP will find a reason not to do something. And yes that reason may be valid.
Take Exercise for example. It has been proven over and over again that vigorous exercise will in the short term ease some of the stiffness, and in the long term slow down the progression of Parkinson's. Now, everyone has to find the level of exercise that is right for them. But you definitely have to push yourself in order for the exercise to be effective. You may not be able to bench press 200 lbs, but you can do a bicep curl with 10 or 5 lb dumb bells. You may not be able to take a spin class (I highly recommend it for any one), but you can do 10 to 15 minutes a day on a stationary bike.
God, I sound like such an arrogant snob. I don't mean to.
A Parkie is someone who will take the challenge of Day to Day living personally. Someone who will do everything possible to slow down the progression of Parkinson's. Not just with exercise for the body, but also exercises for the brain. At the conference we met Don Lawson. He has lived with Parkinson's for about 20 years. He and his wife learn a new card game every 6 months to a year, and they play it every evening. If they don't have friends over, they play it by themselves. He finds it keeps his mind sharp.
Parkies' don't as a rule look at the weather report, we simply get up, look outside and say "I need big boots today" or "Cool! Shorts and tee".
Parkies' are aware of their bodies and Parkinson's, realizing when something is new, what does it effect and how to deal with it.
A Parkie does not let the symptoms of Parkinson's deter them from at least trying something. A Parkie looks for new adventures. Two People I look up to the most in the Parkie world are
Natasha McCarthy, her blog is "A Broken Body's Journey " http://natashachronicles.blogspot.ca/
and the other is Allison Smith or "The Perky Parkie." They are the ones I think of when I need to give myself a kick in the pants. They are the ones who keep me positive. A Parkie looks for the positive in any situation and or person.
Don't get me wrong, I will be a PWP someday. But not tomorrow, or the day after that.
For today I am THE RANDY PARKIE
Remember IT'S ONLY INCONVENIENT
ps. I start my Piano lessens on Wednesday.
Thursday, 26 April 2018
A Simple Thank you
Parkinson's
It is a mean ,nasty little bitch,
It never fails to remind you everyday , " I'm here "
For some, it is the effort of getting out of bed. For others it's knowing that at some point during the day, you will be unable to do something. What ever it is.
Like I have said , "I am very lucky". My symptoms, are at this point very manageable.
Even with onset of Dyskinesia, and Dystonia . I can still , Golf , Ride a bike, Bowl , dance . Do anything I put my mind to. Even learn to play piano .
I have two hero's in my life.
One is my dad , To still be living life with such energy. To be looking to learn knew things, and still be curious. Love you dad.
The other is Cheryl.
I think the real victims of this fucking disease are the spouses, the family members. They didn't sign up for this. But here they are.
Think about it . You go through life , thinking you are with the one you love. You have an idea of what your future will be.
AND BAM. February 13, 2013, 4pm
As a Parkie, all my concentration is on making sure I can get through the day.
It is not just living day to day, but med to med.
On the job I am focused on the next meeting, the next sale.
At home I get to sit and watch a new part of my body move itself.
Kind a fun game , guessing which part will move next.
Everything else will be handled by someone else.
Figuring out which song to use the morning
Spouses of Parkie's .
Get to watch out of the corner of their eye our little game .
It's not fun for them , they see the future .
Sitting there watching your loved one slowly morph into something different , someone different.
Getting up in the morning never knowing which Parkie will show up.
Is it the "Man Cold Parkie" (for the lack of a better term)
Is it the "Angry Parkie "
Is it the "Horny Parkie"
Is it the " Sad Parkie"
And not just the morning ,these guys can show up at any point during the day.
Making sure I take my med' s on time. Organizing the doctor's appointments, etc.
I can understand how this can lead to resentment . bitterness. You did not sign up for this.
The worse part is there is no end to it. It goes on and on.
Again I am so so very lucky .
Cheryl I Love you!!!
Thank you
But I also admire all of the "Parkie Spouses". Both male or female.
Even though we (Parkie's) don't say it near enough
WE THANK YOU
WE LOVE YOU
And remember IT'S ONLY INCONVENIENT
ps: I apologize for the bad grammar, punctuation, etc
I gave my editor the day off.
Saturday, 21 April 2018
Sporting life
Sports and recreation
In my youth. I played Baseball as a kid. I am a left handed thrower and can not throw a straight ball if my life depended on it. So they made me a pitcher. I played hockey but did not have the wrist strength to shoot the puck that well. I found growing up, in whatever sport I tried I was always in the middle, not good enough to make the first team. But not the worst either. Whatever sport I played I could get better with practice.
I did mange to play "Beer league fast pitch softball" for many years. And at the highest local level too.I don't think I fooled anybody. Was I ever out of my league. No way I belonged there. But it was fun. Thanks guys.
Now basically I am a two sport kinda guy, Candle Pin Bowling in the winter and golf in the summer.
At bowling I had a 105 average (which in candle pin is considered a good average, not great but very good) which I had maintained for many years. Suddenly during the 2011 bowling season my average started to fall. I wasn't doing anything differently. It was just I had no idea where the ball was going . The harder I tried to concentrate the worse I got. Understand I have been bowling since I was 9 years old. I was ready to quit. Cheryl told me to keep at it. I came back for the next season. More of the same. The frustration level is climbing through the roof. My average is down to 85.
February 13, 2013 at 4 pm.
It takes about a month to get up to your full dosage of Levodopa. The doctor started me on Levodopa the first appointment. 1 week at half pill. 1 week at 1 full pill. 1 week at 2 pills. By three weeks I am at the full dosage. I start to notice the difference, my tremor has lessened. In the context of the bowling, I am seeing improvement. Next season while things were not back to where they were before, there definitely was progress. This year for the first time in 5 years my average is back over 100.
Through most of my adult life I have golfed. Ask Cheryl, she will definitely tell you. But I never got out enough to join a club, and did not have a regular group of guys to go with. So most of the time I simply went by myself, and played with anyone where I could get on. Prior to February 2013, my golf game was okay. I am not sure if it was the summer of 2013 or 2014, but I started golfing with some of the guys I played ball with years ago. Oh my god, this was great! Now I had a regular golf group. And we played A LOT. The guys are split in half, two of us shot in the mid to low nineties, two do not. I shoot mid to low nineties. So we kind of paired up. I started to notice a change in my game as I got closer to med time. As it got closer, my game would get a little ragged. I would top the ball and putt the ball nowhere near the hole. I would take the Pills and my game would come back before the next hole. I would be on the other side of the course away from the cart and my phone would go off. The guys would yell "take your pills". Did I tell you I played a lot? After the incident (see previous blog) I golfed a little less. Last year was the best I have ever golfed in my life!
I hit the ball farther now then I did when I was 30!
This year ...
On or about the first of April. I noticed when I was sitting watching TV, my feet would start to move.
Not the rhythmic tapping you know people do sometimes, sorta circle motions. Not the tremor I had before. Then it would move to my hands. I would put my hands together, like I did when I was hiding the tremor, but that did not work. They moved in a wringing motion. The shocker was the head. Side to side, in circleular motions.
Well it was happening!
I was going to be Michael J Fox. Or rather the stereotypical Parkie.
It's called Dyskinesia. I can not even say the word properly.
Truth be told, it scares the shit out of me!
Dyskinesia is an abnormal, uncontrolled, involuntary movement. It can affect one body part, such as an arm, leg or the head, or it can spread over the entire body. Dyskinesia can look like fidgeting, writhing, wriggling, head bobbing or body swaying. It doesn't happen in everyone with Parkinson's, and in those who do have it, it occurs to different degrees
Dyskinesia typically occurs as a complication of long-term levodopa use. Additional factors that may contribute to dyskinesia include a younger age at diagnosis and the use of higher doses of levodopa for extended periods of time.
I had a recent appointment with the Doc, his take... "Well this lets us know you still have some receptors left, and we can work with those receptors." Sure Doc, whatever you say.
But how is this going to effect my golf game. I just got my drive working. How do you putt when your body won't stay still.
I recently bowled in the Alpine bowling Tourney. I Sucked! Out of the almost 20 games I bowled, I only broke 100 twice. I was quick to blame the dyskinesia
But as I think back on it, was it that I tried too hard? Threw too hard? Put too much pressure on myself? It wasn't the Parkinson's, it was me.
One of the things that makes a person a Parkie and not a PWP is a PWP will say I can not do something because of the Parkinson's. A Parkie says " I may not do something as well as I did before, but at least I can still do it."
I am really looking forward to the upcoming golf season.
Remember: IT'S ONLY INCONVENIENT
In my youth. I played Baseball as a kid. I am a left handed thrower and can not throw a straight ball if my life depended on it. So they made me a pitcher. I played hockey but did not have the wrist strength to shoot the puck that well. I found growing up, in whatever sport I tried I was always in the middle, not good enough to make the first team. But not the worst either. Whatever sport I played I could get better with practice.
I did mange to play "Beer league fast pitch softball" for many years. And at the highest local level too.I don't think I fooled anybody. Was I ever out of my league. No way I belonged there. But it was fun. Thanks guys.
Now basically I am a two sport kinda guy, Candle Pin Bowling in the winter and golf in the summer.
At bowling I had a 105 average (which in candle pin is considered a good average, not great but very good) which I had maintained for many years. Suddenly during the 2011 bowling season my average started to fall. I wasn't doing anything differently. It was just I had no idea where the ball was going . The harder I tried to concentrate the worse I got. Understand I have been bowling since I was 9 years old. I was ready to quit. Cheryl told me to keep at it. I came back for the next season. More of the same. The frustration level is climbing through the roof. My average is down to 85.
February 13, 2013 at 4 pm.
It takes about a month to get up to your full dosage of Levodopa. The doctor started me on Levodopa the first appointment. 1 week at half pill. 1 week at 1 full pill. 1 week at 2 pills. By three weeks I am at the full dosage. I start to notice the difference, my tremor has lessened. In the context of the bowling, I am seeing improvement. Next season while things were not back to where they were before, there definitely was progress. This year for the first time in 5 years my average is back over 100.
Through most of my adult life I have golfed. Ask Cheryl, she will definitely tell you. But I never got out enough to join a club, and did not have a regular group of guys to go with. So most of the time I simply went by myself, and played with anyone where I could get on. Prior to February 2013, my golf game was okay. I am not sure if it was the summer of 2013 or 2014, but I started golfing with some of the guys I played ball with years ago. Oh my god, this was great! Now I had a regular golf group. And we played A LOT. The guys are split in half, two of us shot in the mid to low nineties, two do not. I shoot mid to low nineties. So we kind of paired up. I started to notice a change in my game as I got closer to med time. As it got closer, my game would get a little ragged. I would top the ball and putt the ball nowhere near the hole. I would take the Pills and my game would come back before the next hole. I would be on the other side of the course away from the cart and my phone would go off. The guys would yell "take your pills". Did I tell you I played a lot? After the incident (see previous blog) I golfed a little less. Last year was the best I have ever golfed in my life!
I hit the ball farther now then I did when I was 30!
This year ...
On or about the first of April. I noticed when I was sitting watching TV, my feet would start to move.
Not the rhythmic tapping you know people do sometimes, sorta circle motions. Not the tremor I had before. Then it would move to my hands. I would put my hands together, like I did when I was hiding the tremor, but that did not work. They moved in a wringing motion. The shocker was the head. Side to side, in circleular motions.
Well it was happening!
I was going to be Michael J Fox. Or rather the stereotypical Parkie.
It's called Dyskinesia. I can not even say the word properly.
Truth be told, it scares the shit out of me!
Dyskinesia is an abnormal, uncontrolled, involuntary movement. It can affect one body part, such as an arm, leg or the head, or it can spread over the entire body. Dyskinesia can look like fidgeting, writhing, wriggling, head bobbing or body swaying. It doesn't happen in everyone with Parkinson's, and in those who do have it, it occurs to different degrees
Dyskinesia typically occurs as a complication of long-term levodopa use. Additional factors that may contribute to dyskinesia include a younger age at diagnosis and the use of higher doses of levodopa for extended periods of time.
I had a recent appointment with the Doc, his take... "Well this lets us know you still have some receptors left, and we can work with those receptors." Sure Doc, whatever you say.
But how is this going to effect my golf game. I just got my drive working. How do you putt when your body won't stay still.
I recently bowled in the Alpine bowling Tourney. I Sucked! Out of the almost 20 games I bowled, I only broke 100 twice. I was quick to blame the dyskinesia
But as I think back on it, was it that I tried too hard? Threw too hard? Put too much pressure on myself? It wasn't the Parkinson's, it was me.
One of the things that makes a person a Parkie and not a PWP is a PWP will say I can not do something because of the Parkinson's. A Parkie says " I may not do something as well as I did before, but at least I can still do it."
I am really looking forward to the upcoming golf season.
Remember: IT'S ONLY INCONVENIENT
Thursday, 12 April 2018
Trouble in Paradise
The Good the Bad and the Ugly
I guess it started about April 2015. We had just had our once in a life time trip to Hawaii.
There is another symptom of Parkinson's that does not get enough attention, and that is Depression.
If you look up the symptoms of depression and the symptoms of PD, they are pretty similar.
I mean really alike. The debate is, are you depressed because you have an incurable disease, or does the incurable disease cause the depression.
Either way, you don't really feel it coming on. You talk about what to watch for in Support Group. But you are Superman. You know what is happening to your mind, and body.
But it comes.
The general feeling of sadness. You wonder why? This (whatever) should be a blast, why am I not excited?
The feeling of being overwhelmed.
In May I told the Chapter I was stepping down. They could see it I think. You say "I can hide it", but you really don't.
Other people could see it , but did not say anything.
And it doesn't stay, it goes away...you feel almost normal. For a time.
You start finding reasons not to do things.
You start to find ways so you can hide for an extended length of time. For me that was golf .
I got out every chance I could. I mean I golfed a lot. Cheryl told me later, she did not say anything at the time because she felt I may only be able to golf for a short time so I should be able to enjoy it while I can. And I took advantage.
Cheryl would ask me how I was, and I would say "Good, but a little sad today"
I was the rock, I could handle a little sadness
WHAT I DID WAS WRONG.
If any of the above might refer to you talk to someone, anyone, your wife, your family, your doctor. Anyone, tell them what you are feeling. You are not alone. People love you, it never is that bad. Hell, talk to me. Get help . If it is really bad go to the hospital. Anything, but get help.
YOU ARE NOT ALONE.
Work was starting to get very busy. I was driving a lot to Fredericton. The drives, all you do is think.
I am not sure when the exact date of the appointment was, but, I guess you don't know what you don't know.
I told my doctor I wanted the tremors gone. Give me whatever you need to, to make them go away.
So, on my instructions, my meds were changed to:
1 only of the 100/25 Levodopa/Carbodopa
and .75 units of Pramipexole or AKA Meripex
4 times a day
So if you go to the web site for Pramipexole you get under the side effects section.....
"You may have increased sexual urges, unusual urges to gamble, or other intense urges while taking this medication. Talk with your doctor if you believe you have any intense or unusual urges while taking Pramipexole."
What is Pramipexole? It is what is referred to as a Dopamine Antagonist.
Meaning, it stimulates the cells that accept the dopamine, to take in more dopamine.
Works real good, no more tremor .
The first sign things were starting to go down hill was just after the Superwalk in September. I told Cheryl I was going with the guys golfing, on a Sunday.....again.
Has anyone actually seen a Conniption Fit?? I did that day! And she was right, very right.
I am not saying that to be funny, I had golfed a whole lot.
About October other changes were happening in the relationship.
I started to ask for more sex. We were for most of our marriage, a twice a week couple. Sometimes more if on holiday. Pretty much Friday and Saturday, never during the week. Me? I could always have more. And if I asked and was told no, I was disappointed, but not angry.
Okay, I am a man, I pouted.
Well now I was asking during the week, and if the answer was no, then I started asking myself "what was wrong with me?" She doesn't find me attractive." I was relentless. If you are saying no then you must not love me. And when we did have sex, I think Cheryl felt more pressured than pleasured.
And there's more.
You know those thoughts you get in your head sometimes, even to your spouse? The ones you think but never say?
Well I said them.
Welcome Impulse Control Disorder to the party.
I started watching and reading a lot of porn.
Christmas was the turning point.
Everything blew up.
I was a full blown Addict, I was gone. Things got said.
Cheryl, I am so sorry for ruining Christmas.
See, all along I thought I was in control. I knew about the side effects, and I could defeat them when they came. BBAGH!!!! wrong answer.
So in January I made the call. Well doc, you were right, I did not see it coming.
So we started to shift the meds .
Eventually in February I went to ...
3 only Levadopa, 4 times a day
.25 Pramipexole, 3 times a day
Which, by the way I am still on.
Within a few days of taking this configuration...snap!
I just felt different. The urges were gone, and the tremor had returned, but not as bad as before.
Good trade off!!
I went to therapy for the depression. While it still comes back, I now know how to deal with it better.
We are back to our normal 2 times a week.
Sorry boys it happens deal with it.
One of the big reasons I put this out there is pretty much every Parkie has heard about the side effects of Meripex. It is not just sex, it's gambling, shopping, other OCD behaviors. We know a woman who gets up in the middle of the night because she just has to paint right now!!! It can't wait until morning.
But there is no dialog.
I was talking to another Parkie and the subject about Meripex and the side effects came up.
I mentioned I had the Hyper-sexuality and got the " oh you had that" look, change of subject.
Even on the on-line forums it is referred to by innuendo and side referrals.
Like depression, we have to learn to talk about things that can make us uncomfortable. Especially to the ones we love.
So turn to your partner and say "I love you, and how are you feeling today?"
And remember "IT'S ONLY INCONVENIENT"
I guess it started about April 2015. We had just had our once in a life time trip to Hawaii.
There is another symptom of Parkinson's that does not get enough attention, and that is Depression.
If you look up the symptoms of depression and the symptoms of PD, they are pretty similar.
I mean really alike. The debate is, are you depressed because you have an incurable disease, or does the incurable disease cause the depression.
Either way, you don't really feel it coming on. You talk about what to watch for in Support Group. But you are Superman. You know what is happening to your mind, and body.
But it comes.
The general feeling of sadness. You wonder why? This (whatever) should be a blast, why am I not excited?
The feeling of being overwhelmed.
In May I told the Chapter I was stepping down. They could see it I think. You say "I can hide it", but you really don't.
Other people could see it , but did not say anything.
And it doesn't stay, it goes away...you feel almost normal. For a time.
You start finding reasons not to do things.
You start to find ways so you can hide for an extended length of time. For me that was golf .
I got out every chance I could. I mean I golfed a lot. Cheryl told me later, she did not say anything at the time because she felt I may only be able to golf for a short time so I should be able to enjoy it while I can. And I took advantage.
Cheryl would ask me how I was, and I would say "Good, but a little sad today"
I was the rock, I could handle a little sadness
WHAT I DID WAS WRONG.
If any of the above might refer to you talk to someone, anyone, your wife, your family, your doctor. Anyone, tell them what you are feeling. You are not alone. People love you, it never is that bad. Hell, talk to me. Get help . If it is really bad go to the hospital. Anything, but get help.
YOU ARE NOT ALONE.
Work was starting to get very busy. I was driving a lot to Fredericton. The drives, all you do is think.
I am not sure when the exact date of the appointment was, but, I guess you don't know what you don't know.
I told my doctor I wanted the tremors gone. Give me whatever you need to, to make them go away.
So, on my instructions, my meds were changed to:
1 only of the 100/25 Levodopa/Carbodopa
and .75 units of Pramipexole or AKA Meripex
4 times a day
So if you go to the web site for Pramipexole you get under the side effects section.....
"You may have increased sexual urges, unusual urges to gamble, or other intense urges while taking this medication. Talk with your doctor if you believe you have any intense or unusual urges while taking Pramipexole."
What is Pramipexole? It is what is referred to as a Dopamine Antagonist.
Meaning, it stimulates the cells that accept the dopamine, to take in more dopamine.
Works real good, no more tremor .
The first sign things were starting to go down hill was just after the Superwalk in September. I told Cheryl I was going with the guys golfing, on a Sunday.....again.
Has anyone actually seen a Conniption Fit?? I did that day! And she was right, very right.
I am not saying that to be funny, I had golfed a whole lot.
About October other changes were happening in the relationship.
I started to ask for more sex. We were for most of our marriage, a twice a week couple. Sometimes more if on holiday. Pretty much Friday and Saturday, never during the week. Me? I could always have more. And if I asked and was told no, I was disappointed, but not angry.
Okay, I am a man, I pouted.
Well now I was asking during the week, and if the answer was no, then I started asking myself "what was wrong with me?" She doesn't find me attractive." I was relentless. If you are saying no then you must not love me. And when we did have sex, I think Cheryl felt more pressured than pleasured.
And there's more.
You know those thoughts you get in your head sometimes, even to your spouse? The ones you think but never say?
Well I said them.
Welcome Impulse Control Disorder to the party.
I started watching and reading a lot of porn.
Christmas was the turning point.
Everything blew up.
I was a full blown Addict, I was gone. Things got said.
Cheryl, I am so sorry for ruining Christmas.
See, all along I thought I was in control. I knew about the side effects, and I could defeat them when they came. BBAGH!!!! wrong answer.
So in January I made the call. Well doc, you were right, I did not see it coming.
So we started to shift the meds .
Eventually in February I went to ...
3 only Levadopa, 4 times a day
.25 Pramipexole, 3 times a day
Which, by the way I am still on.
Within a few days of taking this configuration...snap!
I just felt different. The urges were gone, and the tremor had returned, but not as bad as before.
Good trade off!!
I went to therapy for the depression. While it still comes back, I now know how to deal with it better.
We are back to our normal 2 times a week.
Sorry boys it happens deal with it.
One of the big reasons I put this out there is pretty much every Parkie has heard about the side effects of Meripex. It is not just sex, it's gambling, shopping, other OCD behaviors. We know a woman who gets up in the middle of the night because she just has to paint right now!!! It can't wait until morning.
But there is no dialog.
I was talking to another Parkie and the subject about Meripex and the side effects came up.
I mentioned I had the Hyper-sexuality and got the " oh you had that" look, change of subject.
Even on the on-line forums it is referred to by innuendo and side referrals.
Like depression, we have to learn to talk about things that can make us uncomfortable. Especially to the ones we love.
So turn to your partner and say "I love you, and how are you feeling today?"
And remember "IT'S ONLY INCONVENIENT"
Saturday, 7 April 2018
A Working Parkie
Wow, this is surreal.
It's 6:14 am. The house is quite, except for the sound of money going up the chimney aka furnace.
The house is dark. I am sitting on a big comfy chair, the laptop is on the coffee table and I am wearing a headlamp so I can see the keys as I type. I feel like a reporter in a 60's movie. I look like a dork. Well at least I am not naked .... I just got caught (wife is laughing at me) oh well.
At this time I want to say how lucky I am. I have a loving, caring partner, lover, wife. Kids are good, Job is going great. So at times when this sounds like woe is me, I really do appreciate how fortunate I am and what great friends I have.
TO ALL OF YOU "THANKS"
There is a saying in the Parkie world, how true it is I don't know.
It goes like this " The younger you are when you are diagnosed, the faster the regression. The older you are, the slower the regression " Young onset Parkinson Disease (YOPD) is anyone under 50 , the average age of diagnosis is between 60 and 70. I was 54, so I fall in the middle. Again very lucky.
Of all the evils waiting to attack your body, when you think about it (for me ) PD is not that bad.
Ask me the same question on 10 years.
So at this point in the story things have worked themselves into a routine.
I am now working out, on a semi regular basis at the gym. Going to Tia Chi.
Working with Parkinson's, I of course told my partner and office manager.
For me, again, I am lucky, at this point I can continue to work. Many Parkie's can not. Either the regression comes on too fast, or they are no longer able to do the physical work they were doing before. Me, I am a salesman. In the beginning, as I made my calls, I was very aware of my tremor. I would apologize to the client, telling them I had Parkinson's, which always led to a brief discussion. Now I just do the job, I am comfortable with my tremor ( when it wants to show itself). If someone asks, I tell them.
At the same time I am going to the neurologist every 6 months. He would do his witch doctor stuff,
give me a new prescription and off I would go. I soon found myself timing my appointments around the times my meds were at the strongest. For me that was in the mornings. As well I usually had a bottle of water with me so I could take my meds on time. You are told as a Parkie newbie " Take your meds on time" no matter what. So I have asked a few times for a glass of water, from a client.
There have been many times when we have had to do installations in the afternoon .
I seem to have a slow "off" period between 2 and 3:30. One of the issues I have when I am "off" is I tend to lock up mentally. Not uncommon among Parkies. My job during an install is to train the users on how to use their new telephone system and to answer any questions. I also work as a buffer between Philip (TECH) and the client, so he can get his programing completed. So it happens I am training one user and another user comes up and says blah, blah blah, not working, need to get it working, world will end blah blah blah. My response....... after 2 minutes of silence and a blank face..." I will check with Phil." It is frustrating not being able to rip those answers off at the drop of a dime. Three hours earlier no problem.
I no longer attempt to close sales, especially large sales that require negotiations, in the afternoon.
I have been known to give shit away. Not for free but you know what I mean.
Again I am so lucky.
There are days when you have taken your meds on time and they just don't work. Those days I close my door and put the phone on do not disturb. Or just go home. I am lucky I can do this, many Parkies cannot.
I intend on working as long as I can.. I think if I wasn't working I would turn into a dreaded Person With Parkinson's (PWP).
Parkie vs PWP coming soon
Things have passed pretty well since my diagnosis, I now have a good routine.
Alarm 5:30
To the gym by 5:50 or 6
45 minute work out
15 minutes of Tia Chi
Back home by 7
Showered, breakfast
Leaving with Nathan to go to work around 8
I try to do this Monday to Friday, but it works out usually 3 time a week.
I hate it, the gym. I would much rather stay in bed.
But it helps me move, helps to minimize the "off" times.
I still have the off times, but they seem to be further apart.
We have been very busy at work , never too busy.
We are just about caught up.
Next is Sports and Recreation,
Then : the best year ,and the worst year
As well as some up to date news
Remember IT'S ONLY INCONVENIENT
It's 6:14 am. The house is quite, except for the sound of money going up the chimney aka furnace.
The house is dark. I am sitting on a big comfy chair, the laptop is on the coffee table and I am wearing a headlamp so I can see the keys as I type. I feel like a reporter in a 60's movie. I look like a dork. Well at least I am not naked .... I just got caught (wife is laughing at me) oh well.
At this time I want to say how lucky I am. I have a loving, caring partner, lover, wife. Kids are good, Job is going great. So at times when this sounds like woe is me, I really do appreciate how fortunate I am and what great friends I have.
TO ALL OF YOU "THANKS"
There is a saying in the Parkie world, how true it is I don't know.
It goes like this " The younger you are when you are diagnosed, the faster the regression. The older you are, the slower the regression " Young onset Parkinson Disease (YOPD) is anyone under 50 , the average age of diagnosis is between 60 and 70. I was 54, so I fall in the middle. Again very lucky.
Of all the evils waiting to attack your body, when you think about it (for me ) PD is not that bad.
Ask me the same question on 10 years.
So at this point in the story things have worked themselves into a routine.
I am now working out, on a semi regular basis at the gym. Going to Tia Chi.
Working with Parkinson's, I of course told my partner and office manager.
For me, again, I am lucky, at this point I can continue to work. Many Parkie's can not. Either the regression comes on too fast, or they are no longer able to do the physical work they were doing before. Me, I am a salesman. In the beginning, as I made my calls, I was very aware of my tremor. I would apologize to the client, telling them I had Parkinson's, which always led to a brief discussion. Now I just do the job, I am comfortable with my tremor ( when it wants to show itself). If someone asks, I tell them.
At the same time I am going to the neurologist every 6 months. He would do his witch doctor stuff,
give me a new prescription and off I would go. I soon found myself timing my appointments around the times my meds were at the strongest. For me that was in the mornings. As well I usually had a bottle of water with me so I could take my meds on time. You are told as a Parkie newbie " Take your meds on time" no matter what. So I have asked a few times for a glass of water, from a client.
There have been many times when we have had to do installations in the afternoon .
I seem to have a slow "off" period between 2 and 3:30. One of the issues I have when I am "off" is I tend to lock up mentally. Not uncommon among Parkies. My job during an install is to train the users on how to use their new telephone system and to answer any questions. I also work as a buffer between Philip (TECH) and the client, so he can get his programing completed. So it happens I am training one user and another user comes up and says blah, blah blah, not working, need to get it working, world will end blah blah blah. My response....... after 2 minutes of silence and a blank face..." I will check with Phil." It is frustrating not being able to rip those answers off at the drop of a dime. Three hours earlier no problem.
I no longer attempt to close sales, especially large sales that require negotiations, in the afternoon.
I have been known to give shit away. Not for free but you know what I mean.
Again I am so lucky.
There are days when you have taken your meds on time and they just don't work. Those days I close my door and put the phone on do not disturb. Or just go home. I am lucky I can do this, many Parkies cannot.
I intend on working as long as I can.. I think if I wasn't working I would turn into a dreaded Person With Parkinson's (PWP).
Parkie vs PWP coming soon
Things have passed pretty well since my diagnosis, I now have a good routine.
Alarm 5:30
To the gym by 5:50 or 6
45 minute work out
15 minutes of Tia Chi
Back home by 7
Showered, breakfast
Leaving with Nathan to go to work around 8
I try to do this Monday to Friday, but it works out usually 3 time a week.
I hate it, the gym. I would much rather stay in bed.
But it helps me move, helps to minimize the "off" times.
I still have the off times, but they seem to be further apart.
We have been very busy at work , never too busy.
We are just about caught up.
Next is Sports and Recreation,
Then : the best year ,and the worst year
As well as some up to date news
Remember IT'S ONLY INCONVENIENT
Wednesday, 4 April 2018
Parkie 101
Hello Again
Now that I have been through the beginnings, and have made first contact.. Started my work with the Chapter.
I guess it is time to do a little Parkinson's 101. This will set the back ground for everything to come,
sorta like " the Marlies were dead. This must be remembered or nothing else will make sense " kinda thing.
Parkinson's disease (PD) is a progressive neurological disorder associated with the loss of dopamine-generating cells in the brain. As of this moment there is no known cure. Anyone stating they have been cured of Parkinson's is just plain wrong.
I had a guy on Facebook declare in a Parkinson's Chat Group that God had cured his Parkinson's, and he no longer needed medication. There where two comments and no likes.
By the time you start to show symptoms, in my case the "tremor", 85 % of the brain cells that produce dopamine have died... RIP
When you are told you have Parkinson's and are told it is incurable there are two things you can do; you can find a big comfy chair and a blanket and never come out, OR decide to live the rest of your life in the moment, with what you have today, and what you are today. But sometimes the chair is sooo nice.
PD is diagnosed mainly from the display of symptoms. There is no test, x-ray, MRI, Scan, EEG.
The list includes but not limited to...
Muscle Stiffness
Restive Tremor (Doesn't shake when you move it, only when you stop or are at rest)
Balance issues
When you walk either your right or left arm will not swing
Handwriting becoming hard to read and the writing itself gets smaller.
It does not take the neurologist very long to diagnose PD.
Prompting my usually shy and reserved wife to say, and I quote "How in fuck can a doctor who's never seen you before, decide in 20 minutes that you have an incurable disease?"
I am not going to list all the symptoms, (that's what the internet is for) but they fall into two basic categories, Motor and Non-motor.
So what now?
You treat the symptoms with ..... DRUGS.
There are basically two types of drugs used to treat PD.
They both come in various forms and names.
The first is the dopamine replacement, known as Levadopa/Carbadopa, which works to replace the dopamine your body no longer produces.
The second is a dopamine antagonist, known as Merapex or Premapaxole, which stimulates the dopamine receptors to accept more dopamine.
Each comes with it's own set of mine fields, also known as "side effects", which we will learn later are all kinds of fun.....
Now that I have been through the beginnings, and have made first contact.. Started my work with the Chapter.
I guess it is time to do a little Parkinson's 101. This will set the back ground for everything to come,
sorta like " the Marlies were dead. This must be remembered or nothing else will make sense " kinda thing.
Parkinson's disease (PD) is a progressive neurological disorder associated with the loss of dopamine-generating cells in the brain. As of this moment there is no known cure. Anyone stating they have been cured of Parkinson's is just plain wrong.
I had a guy on Facebook declare in a Parkinson's Chat Group that God had cured his Parkinson's, and he no longer needed medication. There where two comments and no likes.
By the time you start to show symptoms, in my case the "tremor", 85 % of the brain cells that produce dopamine have died... RIP
When you are told you have Parkinson's and are told it is incurable there are two things you can do; you can find a big comfy chair and a blanket and never come out, OR decide to live the rest of your life in the moment, with what you have today, and what you are today. But sometimes the chair is sooo nice.
PD is diagnosed mainly from the display of symptoms. There is no test, x-ray, MRI, Scan, EEG.
The list includes but not limited to...
Muscle Stiffness
Restive Tremor (Doesn't shake when you move it, only when you stop or are at rest)
Balance issues
When you walk either your right or left arm will not swing
Handwriting becoming hard to read and the writing itself gets smaller.
It does not take the neurologist very long to diagnose PD.
Prompting my usually shy and reserved wife to say, and I quote "How in fuck can a doctor who's never seen you before, decide in 20 minutes that you have an incurable disease?"
I am not going to list all the symptoms, (that's what the internet is for) but they fall into two basic categories, Motor and Non-motor.
So what now?
You treat the symptoms with ..... DRUGS.
There are basically two types of drugs used to treat PD.
They both come in various forms and names.
The first is the dopamine replacement, known as Levadopa/Carbadopa, which works to replace the dopamine your body no longer produces.
The second is a dopamine antagonist, known as Merapex or Premapaxole, which stimulates the dopamine receptors to accept more dopamine.
Each comes with it's own set of mine fields, also known as "side effects", which we will learn later are all kinds of fun.....
Sunday, 1 April 2018
First Contact
So there I am .
Newly diagnosed.
So far the only people with Parkinson's I have met are pretty much like me.
The Saturday morning Parkies. They would meet on a irregular basis at the crepe place on the Rothesay commons.
Regular guys with maybe a little tremor, or a shuffle walk. Nothing to be scared of.
Some of them have had Parkinson's for over ten years.We would compare symptoms, and as all Parkies do, what type of meds you are on, and how many you are taking, and how often.
(What is it about Parkies. You get two or more Parkies together and in five minutes. The conversation is reduced to what type, how many, and how often). Another topic, another day. Sorry I digress.
Back to the topic, such as it is
This is pretty good I think.
The future looks not so bad....
3 weeks earlier
So when I was diagnosed. One of the first things I did was to reach out to the local listed contact for the Parkinson's Society. I wanted to talk to somebody, I wanted to hear I was going to be all right.
I wanted to know what I was up against.
So I called the number listed. Left messages NOTHING
I tried for 2 weeks NOTHING
I lost it. WTF here I am full of questions.
How long do I have? Will I have to sell my house and buy a single level unit?
Am I going to be Michael J Fox in a week?
So... I wrote a scathing email to the Maritime office in Halifax
I got a reply... and a phone call
Hello my name is Bob Shaw. I am CEO of Parkinson Society Maritime Region (PSMR)
While I can not give you all the answers, I can put you in touch with some guys who can.
Enter the Saturday Morning group.
As well ...
During this time I was Chair of the Saint John Family Resource Centre Board of Directors.
So during my conversations with Bob, I told him I wanted to get involved. Sit on the local board, make a difference, make sure no one's call went unanswered.
Bob in his sneaky little ways said " the local group needs someone to take over the Parkinson's Superwalk". So I said yes.
So now back to the present .
I arrange to meet with the local board and talk about the up coming Superwalk.
So to put this in a time line ...
Diagnosed in February, meet the Saturday morning group April, first board meeting May,
4 months after the diagnosis.
I arrive a little early, the meeting is being held in a house on the west side, in what used to be doctors offices.
I am sitting there my back to the door.
In the matter off ten minutes. My brain explodes
I see the future!!!!!! One guy makes Michael J Fox look normal, another is using a walker. Another just stares, blank faced .
I left the meeting excited to be doing the Superwalk, totally bummed and scared about the future.
This is the first time I had encountered long term Parkies.
And it scared the bejesus out of me
It took sometime to get used to seeing them.
I have learned that they are really great individuals, who still battle, have not given up, are fighting to hang on to who they are, not what they have become. I am proud to call them friends.
So I did the Superwalk. We raised over $13,000 .
The next Board meeting to talk about the walk, they asked me to be Chair. I accepted.
My Cell number is listed as first contact .
Newly diagnosed.
So far the only people with Parkinson's I have met are pretty much like me.
The Saturday morning Parkies. They would meet on a irregular basis at the crepe place on the Rothesay commons.
Regular guys with maybe a little tremor, or a shuffle walk. Nothing to be scared of.
Some of them have had Parkinson's for over ten years.We would compare symptoms, and as all Parkies do, what type of meds you are on, and how many you are taking, and how often.
(What is it about Parkies. You get two or more Parkies together and in five minutes. The conversation is reduced to what type, how many, and how often). Another topic, another day. Sorry I digress.
Back to the topic, such as it is
This is pretty good I think.
The future looks not so bad....
3 weeks earlier
So when I was diagnosed. One of the first things I did was to reach out to the local listed contact for the Parkinson's Society. I wanted to talk to somebody, I wanted to hear I was going to be all right.
I wanted to know what I was up against.
So I called the number listed. Left messages NOTHING
I tried for 2 weeks NOTHING
I lost it. WTF here I am full of questions.
How long do I have? Will I have to sell my house and buy a single level unit?
Am I going to be Michael J Fox in a week?
So... I wrote a scathing email to the Maritime office in Halifax
I got a reply... and a phone call
Hello my name is Bob Shaw. I am CEO of Parkinson Society Maritime Region (PSMR)
While I can not give you all the answers, I can put you in touch with some guys who can.
Enter the Saturday Morning group.
As well ...
During this time I was Chair of the Saint John Family Resource Centre Board of Directors.
So during my conversations with Bob, I told him I wanted to get involved. Sit on the local board, make a difference, make sure no one's call went unanswered.
Bob in his sneaky little ways said " the local group needs someone to take over the Parkinson's Superwalk". So I said yes.
So now back to the present .
I arrange to meet with the local board and talk about the up coming Superwalk.
So to put this in a time line ...
Diagnosed in February, meet the Saturday morning group April, first board meeting May,
4 months after the diagnosis.
I arrive a little early, the meeting is being held in a house on the west side, in what used to be doctors offices.
I am sitting there my back to the door.
In the matter off ten minutes. My brain explodes
I see the future!!!!!! One guy makes Michael J Fox look normal, another is using a walker. Another just stares, blank faced .
I left the meeting excited to be doing the Superwalk, totally bummed and scared about the future.
This is the first time I had encountered long term Parkies.
And it scared the bejesus out of me
It took sometime to get used to seeing them.
I have learned that they are really great individuals, who still battle, have not given up, are fighting to hang on to who they are, not what they have become. I am proud to call them friends.
So I did the Superwalk. We raised over $13,000 .
The next Board meeting to talk about the walk, they asked me to be Chair. I accepted.
My Cell number is listed as first contact .
Friday, 30 March 2018
The Begining
WOW
Here we are.
Five years late, but here we are.
I told myself when this all started the I would do a blog. My reason was I was going to share my experience, and by doing so help someone. Any one, just help someone.
Now I find the person I am helping is myself.
Okay as this is the first of hopefully many posts. First the beginning, then on the good stuff .
But first I must warn you . I write the same way I talk . I tend to leave words out and change my train of thought quickly.
Every Parkie remembers the date, the time you when you are sitting in a exam room.
February 13, 2013 3:30 pm
Me, the doctor and the nurse . My wife did not come with me. We thought, where it was the first consult. I would be sent for tests, and in 3 to 6 months we would find out what caused the tremor in my right hand. So we decided she did not need to come. WHO KNEW. Twenty minutes and bang life changed,
So there it was Parkinson's
For any one out there just getting the news, I implore you, find someone, anyone with Parkinson's and talk to them. Look for a Support group in your area. Don't think you can find all there is to know on the internet. You can't.
You need to ask questions, you need to hear the experience.
Our response
Lets go the Casino for the weekend, get away from our family. So they won't see the red eyes. So we would not have to tell them. We told ourselves , we wanted to get some answers first.
I just wanted to hide.
I was going to be Michael J Fox in a week
I did not have that contact at first. Eventually I was put in touch with a small group of fellow Parkies.
That was everything. I am forever grateful to the now friend who guide me to them
Parkinson's is like the yellow car thing . Buy a yellow car and suddenly there are bloody yellow cars everywhere. Tell someone you have Parkinson's, and they suddenly have a relative who has had Parkinson. And everyone has a opinion, or a cure. One guy told me his neighbor had Parkinson's and he stopped the tremors by going on the Paleo diet.
I was told countless times about aunts and uncles who have died with Parkinson's.
"You don't die of Parkinson's , You die with Parkinson's"
I did do research . I found out that exercise can slow the progression of the disease . So I joined a gym. Fifty-four standing in the middle of a large room full of machines from the Spanish Inquisition.
"No one expects the Spanish Inquisition" Expecting a guy in a long red robe with a hunchback at his side to appear any minute."you have the quaking sign, you must be purged" But this nice 10 year old ( well she looked ten) saved me.
It was also a relief. I now had a reason my dick stopped working.(Yes I will talk candidly about sex , it is an important part of life. Just simply ignoring it or addressing it in vague language is not my style) I had gone to the doctor 6 months prior, and got the "happy pill". My wife was somewhat relieved ,as she thought she was the reason for the problem.
I now knew why I went from a good bowler to a terrible bowler.
So if you are just getting the news and your search leads you here.
My advice:
Breath everything will be sort of fine.
This is a long distance marathon, not a sprint.
YOU will not be Michael J Fox in a week
Be honest with yourself and your partner .
Start to excise if you don't, work harder if you do
AND MOST OF ALL REMEMBER
IT'S ONLY INCONVENIENT
Here we are.
Five years late, but here we are.
I told myself when this all started the I would do a blog. My reason was I was going to share my experience, and by doing so help someone. Any one, just help someone.
Now I find the person I am helping is myself.
Okay as this is the first of hopefully many posts. First the beginning, then on the good stuff .
But first I must warn you . I write the same way I talk . I tend to leave words out and change my train of thought quickly.
Every Parkie remembers the date, the time you when you are sitting in a exam room.
February 13, 2013 3:30 pm
Me, the doctor and the nurse . My wife did not come with me. We thought, where it was the first consult. I would be sent for tests, and in 3 to 6 months we would find out what caused the tremor in my right hand. So we decided she did not need to come. WHO KNEW. Twenty minutes and bang life changed,
So there it was Parkinson's
For any one out there just getting the news, I implore you, find someone, anyone with Parkinson's and talk to them. Look for a Support group in your area. Don't think you can find all there is to know on the internet. You can't.
You need to ask questions, you need to hear the experience.
Our response
Lets go the Casino for the weekend, get away from our family. So they won't see the red eyes. So we would not have to tell them. We told ourselves , we wanted to get some answers first.
I just wanted to hide.
I was going to be Michael J Fox in a week
I did not have that contact at first. Eventually I was put in touch with a small group of fellow Parkies.
That was everything. I am forever grateful to the now friend who guide me to them
Parkinson's is like the yellow car thing . Buy a yellow car and suddenly there are bloody yellow cars everywhere. Tell someone you have Parkinson's, and they suddenly have a relative who has had Parkinson. And everyone has a opinion, or a cure. One guy told me his neighbor had Parkinson's and he stopped the tremors by going on the Paleo diet.
I was told countless times about aunts and uncles who have died with Parkinson's.
"You don't die of Parkinson's , You die with Parkinson's"
I did do research . I found out that exercise can slow the progression of the disease . So I joined a gym. Fifty-four standing in the middle of a large room full of machines from the Spanish Inquisition.
"No one expects the Spanish Inquisition" Expecting a guy in a long red robe with a hunchback at his side to appear any minute."you have the quaking sign, you must be purged" But this nice 10 year old ( well she looked ten) saved me.
It was also a relief. I now had a reason my dick stopped working.(Yes I will talk candidly about sex , it is an important part of life. Just simply ignoring it or addressing it in vague language is not my style) I had gone to the doctor 6 months prior, and got the "happy pill". My wife was somewhat relieved ,as she thought she was the reason for the problem.
I now knew why I went from a good bowler to a terrible bowler.
So if you are just getting the news and your search leads you here.
My advice:
Breath everything will be sort of fine.
This is a long distance marathon, not a sprint.
YOU will not be Michael J Fox in a week
Be honest with yourself and your partner .
Start to excise if you don't, work harder if you do
AND MOST OF ALL REMEMBER
IT'S ONLY INCONVENIENT
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