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 .
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