The date is Tuesday, December 10 2019.
I am sitting at my desk at the office. It is 12:52 pm.
I just finished my lunch.
Trying to think of a way to start this.
Back on August 2. I did my challenge. And as the blog implied, it did absolutely nothing for me.
I was hoping at the time that it would prove I would qualify for Deep Brain Stimulation (DBS).
The
only thing it did prove was that I am an anomaly. I take my last dose
of meds for the day at 6 pm, which lasts me until about 10 pm, which is
when I start to feel the drugs wearing off.
Then I trundle off to
bed, to hopefully sleep until 5 or 6 am. But usually I am up a 4 am on a
good day. The weird part is that I have none of the symptoms of
Parkinson's . I wake up at 4 am and I am normal. I can go play (sort of)
the piano. I can walk with ut stiffness. Alas it is not to last. About 6
am or so (but I have stretched the first dosage to as late as 9 am) I
can feel the PD start to wake up. So I star, 4 of the 100mg of
Carbidopa/ Levadopa (C/L) and .25 of Premapaxole, 4 times a day.
(I know I have said this before, but pay attention it's important)
I
have found that the C/L is effective for about 4 hours (on a good day),
so I take my meds at 6 am, 10 am, 2 pm, 6 pm. Simple right ??!!!
But good days, well they just do not seem to happen that often.
Most
days the 6 am to 10 am in the mornings are great. At about 12:30,
things can start to get a little henky. You know that feeling you get
when you have the flu? That creepy crawly tingle in the skin? And not
the good creepy crawly in the skin looking at Chris Hemsworth without a
shirt, or Rachael McAdams in nothing kind. Slowly but surely my tremor
in my right hand gets worse. Typing becomes harder. Even moving the
mouse is an adventure. Even my right leg starts to shake.
I am digging out the med box around 1:15 to 1: 30.
I take my meds early.
First of all I am hoping they kick in right away. Secondly I hope they will last until 6 pm.
Most days lately neither happens.
Most days it can be to 4 pm when I start to feel a little bit better.
So if you were paying attention before, I am not getting the 4 hours of relief I should be.
You see, in the PD world once it starts going south it is hard to get back.
Some
days you just have to pack it in, and hope tomorrow is a better day.
But when it goes off at 1 in the afternoon, it makes for a long day.
BTW it took me 30 minutes to type this paragraph.
So what to do about it ??
I
really can't take anymore C/L. I am at the upper limit. I could
increase the Premapaxole, that might work, but I do not want to go down
that road again.
Welcome.......The "MOVAPO Pen"
What is Movapo Pen you ask?
MOVAPO PEN is indicated to reduce the number and severity of 'off'
phases in patients with Parkinson's disease severely disabled by motor
fluctuations refractory to conventional therapy.
Translation ; You use it on a "as needed basis" when you are experiencing an off period(s) between your normal dose times.
How do you take it?
The
way to take this medicine is: Subcutaneous.
This medicine is injected, usually with a short needle
or pen-like device, into the fat just beneath the skin. Pretty much says
it all.
I am told it takes about 15 to 20 minutes to work and lasts for 90 minutes.
And the good thing, you can take it up to 5 times a day.
Now comes the fun part.
Each dose is set for the individual.
So how do you determine the proper dosage?
Well, ahem, gulp...
On Thursday morning I am to report to the Hospital at 9 am.
I am not to take my meds in the morning.
Unlike last time, this time they will wait for me to slowly sink into offness.
Talk about karma, as I am typing this, the radio is playing " I want to be sedated".
To prep for this event I have to take anti-nausea drugs three times a day for 2 days.
Be well hydrated .
Then
once I am fully "off" they will administer the drug (stick me with the
needle), and see what happens. I am not sure what happens if they get
the dosage wrong. Do I have to wait for the stuff to wear off and try
again? I guess so. The end result is when I leave I will have the pen
set to the proper dosage.
I think I am the first Parkie in Saint John to use this.
So everybody is learning, me, the doctor, the nurse, Cheryl.
What I am hoping for?
I would like a day that was even, a day where I could count on how I was going to feel for the whole day. Good or bad.
If
I wake up in the morning and after taking my meds, I feel good, and
good is a relative term, then that is the way I will feel the rest of
the day. Where if I feel an "off period " coming I can stick myself.
Wait 20 minutes and get on with my day, or activity.
I have made
my piece with not ever feeling normal again. That dream has long since
gone. All I want now is a little consistency. Or the ability to make it
consistent.
Now the "normals" in the crowd will say "even OUR days are not consistent".
I
said I will never know normal again. Doesn't mean I don't remember how
it felt. Like an old beloved memory. But I am sorry, with all due
respect, until you have experienced a full blown "OFF" for yourself, for 3 hours, then come and see me.
CAN I GET AN AMEN FROM THE PARKIES
So this actually took me 3 days to write.
It is now Thursday morning.
This is just the lead up, the back story.
The real fun starts NOW.
Friday, 13 December 2019
Thursday, 12 December 2019
Movapo Part 2
Movapo Part 2
To say it has been a long day would not do it justice.
My intention when I got up this morning was to document the day.
Using videos to show the progression of the "off period" and the response to the Movapo.
Well....
As with most things in life, things just don't seem to be as simple as you figure.
I started out okay, on plan. I shot videos of myself every so often.
I stopped when Cheryl got up, and we started getting dressed for the day.
We had been instructed to be at the EMG Lab, Regional Hospital at 9 am .
So my first dose of the day was to be at 6 am. That time came and went. No big deal I had missed this time before. There was a little bit of stiffness. But it felt like a normal morning.
I realized something was happening when I criticized Cheryl's choice of route to the hospital.
Maybe not my brightest moment. I became aware that things were happening.
We arrived at the hospital at 8:30. Waiting in the registration area and walked down to the EMG lab.
And waited...
Shortly after 9 we were called in.
There was the Doctor, Rose (Parkinson's Nurse) and Lena (Movapo Rep)
They took one look at me and said " you look marvelous".
Well maybe not exactly like that, but they could tell, as we all suspected, I was not "off" enough.
So we were told to go have a coffee and come back at 10. So we did.
Back to the EMG lab at 10.
" No you are just too good looking for us " they said . " Go away and come back when you are a lot more off-ensive."
This time we were told to come back at 1 pm.
The 10 am dose time came and went.
Still only feeling a little stiff, and my right big toe is getting a little tense. But I think I am clear headed and talking well.
So we went.
We went to Canadian Tire. Had lunch at Swiss Chalet.
And back to the hospital for 1 pm.
On the walk from the car to the hospital my right big toe is now curling under my foot, forcing me to walk on the side of my foot.
I am getting pretty slow. In spite of all this, I still feel normal. I am unaware anything is happening to me. Other than I walk a little slower.
So back to the Hospital.
This time they said " have a seat."
Okay...
Every Parkie and their Carer is aware of the "trained seal" evaluation. Unless you have taken the test, or seen someone take the test, it is very hard to describe.
It starts...
Rose asked " tell me a story, what did you do when you left here."
So I told her where we went. While I am telling her, she has this, what I think is, a silly look.
While I thought I was speaking clearly, I was told later I was actually very soft.
So it continued. I tapped my right foot. I tapped my left foot, etc. etc etc.
With each task I was scored 0, 1, 2 or 3.
At this point, I have been without meds for 20 hours.
This is my "off" base line.
Now Rose begins to show me how to load the Movapo injection pen. Screw on the needle.
I pull up my sleeve and stick it to me.
We wait..... 9 minutes later...
I am made aware by my body that I was not all right. That something was amiss. And now it was being corrected.
9 minutes and I felt a difference. Everyone in the room saw a difference.
As the time passed I continued to get better.
So after 20 minutes we do the whole trained seal thing again.
In 30 minutes I feel almost like I do when the meds are working.
Frigging Miracle
Around 2 pm Rose gives me some water and I take my meds.
This has been a very, very long day.
The time is now 7:48.
I took my meds at 6 pm as usual .
This dose should do me until 10.
Which is about the time I go to bed.
In the past if I started to go "off" before 10, I would grit my teeth and wait it out.
Now I know there is assistance should I need it.
So tomorrow morning when I leave for work, I will have my wallet, my phone, and my Movapo Pen.
Oh yeah, that video thing, what video!
To say it has been a long day would not do it justice.
My intention when I got up this morning was to document the day.
Using videos to show the progression of the "off period" and the response to the Movapo.
Well....
As with most things in life, things just don't seem to be as simple as you figure.
I started out okay, on plan. I shot videos of myself every so often.
I stopped when Cheryl got up, and we started getting dressed for the day.
We had been instructed to be at the EMG Lab, Regional Hospital at 9 am .
So my first dose of the day was to be at 6 am. That time came and went. No big deal I had missed this time before. There was a little bit of stiffness. But it felt like a normal morning.
I realized something was happening when I criticized Cheryl's choice of route to the hospital.
Maybe not my brightest moment. I became aware that things were happening.
We arrived at the hospital at 8:30. Waiting in the registration area and walked down to the EMG lab.
And waited...
Shortly after 9 we were called in.
There was the Doctor, Rose (Parkinson's Nurse) and Lena (Movapo Rep)
They took one look at me and said " you look marvelous".
Well maybe not exactly like that, but they could tell, as we all suspected, I was not "off" enough.
So we were told to go have a coffee and come back at 10. So we did.
Back to the EMG lab at 10.
" No you are just too good looking for us " they said . " Go away and come back when you are a lot more off-ensive."
This time we were told to come back at 1 pm.
The 10 am dose time came and went.
Still only feeling a little stiff, and my right big toe is getting a little tense. But I think I am clear headed and talking well.
So we went.
We went to Canadian Tire. Had lunch at Swiss Chalet.
And back to the hospital for 1 pm.
On the walk from the car to the hospital my right big toe is now curling under my foot, forcing me to walk on the side of my foot.
I am getting pretty slow. In spite of all this, I still feel normal. I am unaware anything is happening to me. Other than I walk a little slower.
So back to the Hospital.
This time they said " have a seat."
Okay...
Every Parkie and their Carer is aware of the "trained seal" evaluation. Unless you have taken the test, or seen someone take the test, it is very hard to describe.
It starts...
Rose asked " tell me a story, what did you do when you left here."
So I told her where we went. While I am telling her, she has this, what I think is, a silly look.
While I thought I was speaking clearly, I was told later I was actually very soft.
So it continued. I tapped my right foot. I tapped my left foot, etc. etc etc.
With each task I was scored 0, 1, 2 or 3.
At this point, I have been without meds for 20 hours.
This is my "off" base line.
Now Rose begins to show me how to load the Movapo injection pen. Screw on the needle.
I pull up my sleeve and stick it to me.
We wait..... 9 minutes later...
I am made aware by my body that I was not all right. That something was amiss. And now it was being corrected.
9 minutes and I felt a difference. Everyone in the room saw a difference.
As the time passed I continued to get better.
So after 20 minutes we do the whole trained seal thing again.
In 30 minutes I feel almost like I do when the meds are working.
Frigging Miracle
Around 2 pm Rose gives me some water and I take my meds.
This has been a very, very long day.
The time is now 7:48.
I took my meds at 6 pm as usual .
This dose should do me until 10.
Which is about the time I go to bed.
In the past if I started to go "off" before 10, I would grit my teeth and wait it out.
Now I know there is assistance should I need it.
So tomorrow morning when I leave for work, I will have my wallet, my phone, and my Movapo Pen.
Oh yeah, that video thing, what video!
Thursday, 24 October 2019
Confidence
I have always played sports.
Not saying I have ever been great at them mind you.
I played hockey as a kid, weak wrists, no shot.
I played baseball for 20 years. So so arm, couldn't hit worth shit.
Now I mostly golf and I bowl, Candle pin.
I was the guy who every once in a while would make the great play.
But it was years between great plays.
I could, if I practiced a lot, play okay.
But most of all I really loved just playing. Just being part of a group of guys, playing at being kids for a couple of hours.
I have always bowled. As a kid growing up on air force bases it was 5 pin. Every air base had 5 pin lanes.
Then we moved to Saint John and it was 10 pin. I believe the game is called Candle pin.
In Candle pin, unlike Big Ball ten pin (as the maritimers call it) you get to use the dead wood.
In Candle pin, an average score between 105 to 120 is considered good.
I've bowled in a mixed league every Sunday night at 6 pm, starting in September and ending in May,
pretty much since 1979. I have always been a 105-110 average bowler. So not too bad.
About 7-8 years ago things changed. My average was going down. And not slowly. In the past I would stand on the lane, find my target, and let the muscle memory take over.
Most times I would hit my target, or come very close. All of a sudden I was nowhere near it!
It seemed to me that nothing had changed. But the ball would not be anywhere close to my target.
Friends were sympathetic, "just a rough patch" they'd say.
And my average continued to go down.
Make no mistake, while I enjoy just playing, I am also very competitive.
Of course the harder I tried the worse I got.
This went on for 2 years! By the end my average was down to 83.
I'm either stubborn, or stupid. I did not quit. I could not go out this way.
Then in February 2013 I was diagnosed with Parkinson's. I was started on the meds.
I finished out the year.
My average at the end of the year was 85.
So next September I am back at it. By this time I have been on the meds for a longer period.
Things started to look up I ended the year with a 95 average.
Every Parkie has had an extended period of time where nothing changes.
The meds are working. Even the side effects are tame. I was lucky it lasted almost 2 years .
Not saying I did not have bad days. I did, but as I recall overall it wasn't that bad.
So the next year, well I won the most improved bowler award. I had brought my average up to 102.
And that was where it stayed for the next 2 years.
2018
About the same time as my Parkinson's was changing, and we were playing around with the meds,
my bowling stated to go south again.
I was crushed! The last time this happened I was saved by the meds. I can't take any more meds.
I did manage to keep my average at 95.
This year is worse. As of today, 2 months into the season, my average is 83. I have had more games in the 70's then in the 90's and only 1 game over 100.
And that was last Sunday. The last game of the night.
About half way thru that game something changed. Not sure what caused it. Well actually, thinking back on it, I know what changed. I changed.
Instead of thinking "try not to look like a fool" I was thinking "I need a mark, no problem".
And you know what.....I got one. Bet you didn't see that coming.
I remembered what it felt like to be confident. That quiet, inside voice that says "you've got this".
Even if you miss, you still believe in yourself. Others may say they have confidence in you, but until you say it to yourself, their words are just that... words. You know a "smile and nod moment".
Well at least Parkie's know we're smiling.
I know this is a long story. We are getting to the point.
Of all the "NON-MOTOR" symptoms of Parkinson's, the one that is not listed, but what can be one of the most crushing, is losing your confidence. It happens slowly.... event by event. Parkinson's eats away at your confidence.
You have to rely on someone else more and more.
Cheryl won't let me drive to St. Stephen alone any more. And you know she's right to. I will fall a sleep.
You need pills to go to sleep. You need pills to walk. You need pills to .... Well you know, everything.
You find yourself second guessing yourself. It's bad enough everyone else is. And again there is a reason they do. Lets face it. Parkie's can make some bad decisions.
I believe it's the Executive Function thingy.
And worst of all it happens and you don't realize it is happening. I have found myself in situations where I should have stood up for myself. Only to remain quiet. You let others make decisions for you. Because it is easy.
So now that you know, what do you do about it?
I believe you have to find your inner voice. He or she is still there. They are just buried by the depression, the apathy, the self pity.
I know I have carried myself differently since last Sunday night.
I feel different.
You may need a walker to get around, you might have fallen a few times. You could be in pain most of the time.
Take ownership of who you are.
What people see are not your liabilities, but the testament to your courage. Your desire to not give up, to not give in.
Remember "IT'S ONLY FUCKING INCONVENIENT"
Not saying I have ever been great at them mind you.
I played hockey as a kid, weak wrists, no shot.
I played baseball for 20 years. So so arm, couldn't hit worth shit.
Now I mostly golf and I bowl, Candle pin.
I was the guy who every once in a while would make the great play.
But it was years between great plays.
I could, if I practiced a lot, play okay.
But most of all I really loved just playing. Just being part of a group of guys, playing at being kids for a couple of hours.
I have always bowled. As a kid growing up on air force bases it was 5 pin. Every air base had 5 pin lanes.
Then we moved to Saint John and it was 10 pin. I believe the game is called Candle pin.
In Candle pin, unlike Big Ball ten pin (as the maritimers call it) you get to use the dead wood.
In Candle pin, an average score between 105 to 120 is considered good.
I've bowled in a mixed league every Sunday night at 6 pm, starting in September and ending in May,
pretty much since 1979. I have always been a 105-110 average bowler. So not too bad.
About 7-8 years ago things changed. My average was going down. And not slowly. In the past I would stand on the lane, find my target, and let the muscle memory take over.
Most times I would hit my target, or come very close. All of a sudden I was nowhere near it!
It seemed to me that nothing had changed. But the ball would not be anywhere close to my target.
Friends were sympathetic, "just a rough patch" they'd say.
And my average continued to go down.
Make no mistake, while I enjoy just playing, I am also very competitive.
Of course the harder I tried the worse I got.
This went on for 2 years! By the end my average was down to 83.
I'm either stubborn, or stupid. I did not quit. I could not go out this way.
Then in February 2013 I was diagnosed with Parkinson's. I was started on the meds.
I finished out the year.
My average at the end of the year was 85.
So next September I am back at it. By this time I have been on the meds for a longer period.
Things started to look up I ended the year with a 95 average.
Every Parkie has had an extended period of time where nothing changes.
The meds are working. Even the side effects are tame. I was lucky it lasted almost 2 years .
Not saying I did not have bad days. I did, but as I recall overall it wasn't that bad.
So the next year, well I won the most improved bowler award. I had brought my average up to 102.
And that was where it stayed for the next 2 years.
2018
About the same time as my Parkinson's was changing, and we were playing around with the meds,
my bowling stated to go south again.
I was crushed! The last time this happened I was saved by the meds. I can't take any more meds.
I did manage to keep my average at 95.
This year is worse. As of today, 2 months into the season, my average is 83. I have had more games in the 70's then in the 90's and only 1 game over 100.
And that was last Sunday. The last game of the night.
About half way thru that game something changed. Not sure what caused it. Well actually, thinking back on it, I know what changed. I changed.
Instead of thinking "try not to look like a fool" I was thinking "I need a mark, no problem".
And you know what.....I got one. Bet you didn't see that coming.
I remembered what it felt like to be confident. That quiet, inside voice that says "you've got this".
Even if you miss, you still believe in yourself. Others may say they have confidence in you, but until you say it to yourself, their words are just that... words. You know a "smile and nod moment".
Well at least Parkie's know we're smiling.
I know this is a long story. We are getting to the point.
Of all the "NON-MOTOR" symptoms of Parkinson's, the one that is not listed, but what can be one of the most crushing, is losing your confidence. It happens slowly.... event by event. Parkinson's eats away at your confidence.
You have to rely on someone else more and more.
Cheryl won't let me drive to St. Stephen alone any more. And you know she's right to. I will fall a sleep.
You need pills to go to sleep. You need pills to walk. You need pills to .... Well you know, everything.
You find yourself second guessing yourself. It's bad enough everyone else is. And again there is a reason they do. Lets face it. Parkie's can make some bad decisions.
I believe it's the Executive Function thingy.
And worst of all it happens and you don't realize it is happening. I have found myself in situations where I should have stood up for myself. Only to remain quiet. You let others make decisions for you. Because it is easy.
So now that you know, what do you do about it?
I believe you have to find your inner voice. He or she is still there. They are just buried by the depression, the apathy, the self pity.
I know I have carried myself differently since last Sunday night.
I feel different.
You may need a walker to get around, you might have fallen a few times. You could be in pain most of the time.
Take ownership of who you are.
What people see are not your liabilities, but the testament to your courage. Your desire to not give up, to not give in.
Remember "IT'S ONLY FUCKING INCONVENIENT"
Chalange day
I was supposed to take my meds at 6 am
So far just feeling just a little stiff
A little bit of brain fog but that is normal for just getting out off bed
Was able to put my underwear on with out sitting down
Right arm not swinging
fingers stiff but not overly so
Ache inventory : sore muscle feeling on left butt cheek. (Upper Hamstring for the sensitive folk)
other wise good
Typical morning before meds
6:30 breakfast done
As we were going a long I was sending Cheryl text's
6:57
We leave for the hospital.
7:20
We check in at registration, no one waiting , in and out
(maybe that's the secret , register at 7:15 for what ever, and then come back for your appointment. )
7:25
Wander on down to the EMG lab
Go to take a number as usual, and the nurse behind the counter asks if we are here for Rose
She says just have a seat, and Rose will be out to get us
Body inventory: Right hand getting stiffer. fingers ache, butt is increasing, ,but only slightly . I'll lose the weight honest ..... Oh the pain, yeah that is increasing as well.
Lips getting a little floppy when I speak. Good thing I'm texting
7:45
Doctor K arrives with a nice camera.
So let the games begin
They start with the standard PD movement tests
Touch you index finger to your thumb, tap your foot, put your hands face up on your knees (I am seated ) and recite the months backward. Note : the last time I did this a few months ago my hands shook real bad.
Walk down the hall and back .
After each task Rose is looking to the Dr to get a value. Which to this point has been either a "0" or a "1"
At one point the Dr asked me if I had Parkinson's.
Had a discussion with the Dr about changing the timing of my meds. And eventually reducing them.
8:20
Sitting in Tim 's waiting for the meds to kick in
Cheryl an I are talking about being off the meds has not been so bad. Everything about the conversation is positive.
9:15
Back at the EMG Lab
go through all the tests again. Same scores no difference.
This is when we find out the scale goes as high as 23
As well I am given the standard Alzheimer test, a quality of life test , and a Beck depression test
Rose tells me the Dr will send the results to Halifax, along with the video.
So that was Challenge Day
Kind of anticlimactic to say the least
The only thing it proved is that I am one of those annoying "Morning people"
By the way I am typing this at 5:45 AM
Saturday, 8 June 2019
The Angry Parkie
The Province Of New Brunswick and every politician regardless of party should be ashamed of themselves.
As well as every news outlet.
This story affects a lot of people, Not just people who have PD, but those with Alzheimer's, and MS, and many other chronic diseases.
I apologize now . I am so angry and I tend to jump around when worked up.
Province cuts caregivers benefit to fund home-care workers' wage increase
This story appeared on CBC April 5, 2019I only saw it when it appeared on my Facebook page this morning.
$106.00 per month. That's the amount a non paid Caregiver gets from the Province .
That will not even cover the cost of gas to get groceries in a month.
And it was the arrogance in the announcement.
As if this was wasted money. And now it has it's purpose.
The Conservatives should be ashamed for making the cut. and the rest for not screaming bloody murder .
New Brunswick's record and support for no-paid Caregivers is , well non existent.
During the last provincial election I attended a all party debate . Put together by a group representing chronic diseases.
I was able to ask one question.
That question: If elected what will your party do to support non-paid Care givers
I see now what the answers will be .
Nothing Mr Higgs nothing
People have had to leave their jobs to look after a loved one.
Because they can't afford to have someone come in. for 12 hours.
Most paid home support workers are working 3 to 4 clients , so can only spend a few hours with any one client
I am glad to see Parkinson Canada, Atlantic taking a lead on this story.
We will see where it goes. But rest assured Mr Higgs. It will not be forgotten.
Maybe I can load the wheel chairs with tires HMMMMM
The question is not what are you going to do about it Mr. Higgs and Ms Sheppard.
The question is what are we going to do about .
New Brunswick's record on Non-Paid Care givers is an embarrassment.
Look at Nova Scotia Mr. Higgs .
Okay got that off my chest.
Thursday, 21 February 2019
Best Vacation Ever
It started sometime in 2016.
The next three years where going to be big years.
Cheryl was turning 60 in 2017, I was turning 60 in 2018 and our 40th wedding anniversary was happening in 2019. We were achieving something momentous during those three years.
Cheryl has never been past Toronto, and I thought maybe a week in the Rocky mountains would be great. But... have you seen what they want for a room out there? WOW!! Just a cot in the closet is $200.00 per night! Welcome Air Canada. Saint John to Kona, $375.00 one way. Yes I actually read the promo emails. Hawaii is best shared with another couple, better to divide the cost of the condo in half, split the cost of the rental car etc. It is basically the same price for a 1 bedroom as it is for a 2.
And because of the length of flying time from Saint John, you really need to book two weeks.
So I asked my sister Cathy and her husband Bill, and it was decided. February 2019 was going to be the time. Some time in 2017 we picked up my cousin Paul and his wife Dianne, and their friends Frank and Lorna. Flights were booked and paid, condo's booked and paid. It was decided. We would fly out February 1, 2019, Saint John to the Island of Hawaii and Kilian-Kona (Kona). Spend a week in Kona, then fly on for a week on Maui, and then home. From Saint John, no matter how you divide the lay overs in Toronto and Vancouver, it is a 24 hour trip. But please don't let that stop you! You get in to Hawaii at basically midnight, sleep in the next day and you're ready to go.
Travel tip for Parkies, or anyone else who takes meds at regular intervals; set an analog watch to the time zone you depart from. That way as you travel from time zone to time zone, and your smart phone is changing, the analog stays the same. This way you have a steady frame of reference to make sure you take your meds every 4 hours or whatever schedule you're on.
You can't describe Hawaii to someone. There are just to many senses involved. Everything is open air. The minute you step from the plane, you feel the gentle warmth, the air smells different, sweet.
You've just spent 6 hours on a plane, but you can feel the energy run through you.
You actually feel different.
So it's 1 am by the time we get to the hotel and checked in. Bill and I have decided we need a beer.
The girl on the desk points and says "head toward the umbrellas", so we do. We end up in a small local bar with bad Karaoke. Everyone in there knows we are tourists, they smile and go back to their conversations. I go up to the bar to get the beers. The bar tender says " aloha, you want me to run a tab?" Doesn't take my credit card, hands me 4 beers. Great place or what?
That was how all this started. I won't go into all the great places we saw and went to. I think Cheryl and Di pretty much kept everyone up to date on where we were and what we did.
The two or three weeks prior to leaving were the worse I have had in 6 years. I've had bad days, but not like this. I didn't make it a full day without a couple of hours of hard "off" time. And even the rest of the time I did not feel right. Could have just been stress, getting everything ready at work before we left, but could it be another change in the PD? I was terrified it would carry over into the Hawaiian trip. No mater how hard you try to hide what's going on inside your body (you think you are but you're not) everyone in the party knows it. It is one thing for me to be out of sorts, but I would hate to be the reason that others didn't enjoy themselves.
As I said, the moment I stepped off the plane I felt different. Nothing specific, I can't put my finger on it, but different. I think it was about Wednesday of the first week that it hit me, I had not had one "off" time. I was taking my meds on time and I remembered this feeling from six or seven years ago.
It was normal.
We were busy, we filled every day. Every night you crashed into bed, too tired to even fool around.
Thursday turned out to be the big test. I did something I have never done in 6 years, I forgot my meds back at the condo. Worse still, I had taken Cheryl's back up stash out to refill and forgot to put back in her purse. It was about 1:30 when I realized my error. I told Cheryl, she was angry, and scared. I was scared. I could see the concern on the other's faces. I know if I'd asked them to go back to the condo for my meds, they would have gone, but I didn't want to ruin their day out. Now Cheryl is past angry and just scared. I pulled her aside and told her " I fucked up, I am sorry, I don't know what is going to happen, but we will get through it together." It was 6 pm by the time we got back to the condo. I had not taken any meds since 10 am. Almost 8 hours. Other than a little bit of stiffness, nothing had changed! Wow! The rest of the time was perfect!
For the first time in 6 years I remembered what it was like to be normal.
For the first time in 6 years I remembered what is was like to be normal!!!
Jump ahead to Thursday of the next week, 3 am. I am sitting in a quiet condo. Everyone else is asleep. We are leaving in 2 days. It hits me hard. I may never feel this good again. I'm sad, not depressed, but the kind of sad when your best friend is leaving and you're not sure you will ever get to see them again. I don't know if I will ever get back to Hawaii again. If I had the ability I would sell the world and return, sleep in a tent if I had to, sell my soul, to feel that way one more time.
For 2 weeks I got the gift every Parkie longs for...... THE PAST .....Normal!
For 2 weeks I had the best vacation ever!
Mahala to Cheryl, Cathy, Bill, Paul, Dianne, Frank, and Lorna.
I thank you for the best vacation ever!
The next three years where going to be big years.
Cheryl was turning 60 in 2017, I was turning 60 in 2018 and our 40th wedding anniversary was happening in 2019. We were achieving something momentous during those three years.
Cheryl has never been past Toronto, and I thought maybe a week in the Rocky mountains would be great. But... have you seen what they want for a room out there? WOW!! Just a cot in the closet is $200.00 per night! Welcome Air Canada. Saint John to Kona, $375.00 one way. Yes I actually read the promo emails. Hawaii is best shared with another couple, better to divide the cost of the condo in half, split the cost of the rental car etc. It is basically the same price for a 1 bedroom as it is for a 2.
And because of the length of flying time from Saint John, you really need to book two weeks.
So I asked my sister Cathy and her husband Bill, and it was decided. February 2019 was going to be the time. Some time in 2017 we picked up my cousin Paul and his wife Dianne, and their friends Frank and Lorna. Flights were booked and paid, condo's booked and paid. It was decided. We would fly out February 1, 2019, Saint John to the Island of Hawaii and Kilian-Kona (Kona). Spend a week in Kona, then fly on for a week on Maui, and then home. From Saint John, no matter how you divide the lay overs in Toronto and Vancouver, it is a 24 hour trip. But please don't let that stop you! You get in to Hawaii at basically midnight, sleep in the next day and you're ready to go.
Travel tip for Parkies, or anyone else who takes meds at regular intervals; set an analog watch to the time zone you depart from. That way as you travel from time zone to time zone, and your smart phone is changing, the analog stays the same. This way you have a steady frame of reference to make sure you take your meds every 4 hours or whatever schedule you're on.
You can't describe Hawaii to someone. There are just to many senses involved. Everything is open air. The minute you step from the plane, you feel the gentle warmth, the air smells different, sweet.
You've just spent 6 hours on a plane, but you can feel the energy run through you.
You actually feel different.
So it's 1 am by the time we get to the hotel and checked in. Bill and I have decided we need a beer.
The girl on the desk points and says "head toward the umbrellas", so we do. We end up in a small local bar with bad Karaoke. Everyone in there knows we are tourists, they smile and go back to their conversations. I go up to the bar to get the beers. The bar tender says " aloha, you want me to run a tab?" Doesn't take my credit card, hands me 4 beers. Great place or what?
That was how all this started. I won't go into all the great places we saw and went to. I think Cheryl and Di pretty much kept everyone up to date on where we were and what we did.
The two or three weeks prior to leaving were the worse I have had in 6 years. I've had bad days, but not like this. I didn't make it a full day without a couple of hours of hard "off" time. And even the rest of the time I did not feel right. Could have just been stress, getting everything ready at work before we left, but could it be another change in the PD? I was terrified it would carry over into the Hawaiian trip. No mater how hard you try to hide what's going on inside your body (you think you are but you're not) everyone in the party knows it. It is one thing for me to be out of sorts, but I would hate to be the reason that others didn't enjoy themselves.
As I said, the moment I stepped off the plane I felt different. Nothing specific, I can't put my finger on it, but different. I think it was about Wednesday of the first week that it hit me, I had not had one "off" time. I was taking my meds on time and I remembered this feeling from six or seven years ago.
It was normal.
We were busy, we filled every day. Every night you crashed into bed, too tired to even fool around.
Thursday turned out to be the big test. I did something I have never done in 6 years, I forgot my meds back at the condo. Worse still, I had taken Cheryl's back up stash out to refill and forgot to put back in her purse. It was about 1:30 when I realized my error. I told Cheryl, she was angry, and scared. I was scared. I could see the concern on the other's faces. I know if I'd asked them to go back to the condo for my meds, they would have gone, but I didn't want to ruin their day out. Now Cheryl is past angry and just scared. I pulled her aside and told her " I fucked up, I am sorry, I don't know what is going to happen, but we will get through it together." It was 6 pm by the time we got back to the condo. I had not taken any meds since 10 am. Almost 8 hours. Other than a little bit of stiffness, nothing had changed! Wow! The rest of the time was perfect!
For the first time in 6 years I remembered what it was like to be normal.
For the first time in 6 years I remembered what is was like to be normal!!!
Jump ahead to Thursday of the next week, 3 am. I am sitting in a quiet condo. Everyone else is asleep. We are leaving in 2 days. It hits me hard. I may never feel this good again. I'm sad, not depressed, but the kind of sad when your best friend is leaving and you're not sure you will ever get to see them again. I don't know if I will ever get back to Hawaii again. If I had the ability I would sell the world and return, sleep in a tent if I had to, sell my soul, to feel that way one more time.
For 2 weeks I got the gift every Parkie longs for...... THE PAST .....Normal!
For 2 weeks I had the best vacation ever!
Mahala to Cheryl, Cathy, Bill, Paul, Dianne, Frank, and Lorna.
I thank you for the best vacation ever!
Thursday, 24 January 2019
Life on a Battlefield
They say life can be a series of battles.
Some battles you win, some you lose.
Some times the only option is to fight the good fight, even though you know you can't win.
When you are living with Parkinson's it is a full on war.
It's you against PD and its allies.
You and your body have a civil defense army already set-up. This home army protects you against the common cold, flues, outside attacks (injuries). There are far away outposts, and core facilities.
As well you have the outside allies, the doctors, who are ready to assist you, at a moments notice.
Like a war, there are times when it is a raging battle, whole landscapes are changed, collateral damage is everywhere, innocent lives are destroyed. Other times it's a gorilla war, with both sides secretly ambushing the other side.
It sort of plays out like the old British war movies of the 50's and 60's (Everyone under the age of 50 is scratching their heads). The plot for these movies was generally the same.
The hero would risk life and limb retrieving the piece of important intelligence. He/she would bring it to the attention of the high command. (Every one of these movies had the big map with ladies moving pieces around the board). Nobody would believe them, until it was almost too late.
Meanwhile the hero would fall in love. Only the hero could save the day, and he would, but not before his best friend sacrificed himself for the cause.
You sort of know the war is coming in the beginning. But it usually takes a couple of years for head quarters (HQ) to take the reports from the front seriously.
The enemy starts by sending out it's spies, and saboteurs. Attacking small outposts, things head quarters would not notice. HQ starts to hear reports from the frontiers, communication to the right flank has been disrupted. The right arm no longer moves as well as it should. The report comes in and HQ claims bad maintenance. The olfactory sensors have gone off line. That report is buried as non existent. But wait! The sensors are working but seem to be giving false readings. Again HQ ignores the reports.
Then comes the first of the major attacks. The primary drive is no longer able to maintain proper working functions. Again the enemy disguises this attack, and HQ passes the report off to the appropriate department for study. It could be diabetes, high blood pressure, prostrate any manner of things. HQ counters with the pill (take as needed, when the time is right). Life returns to normal.
Up until this time the enemy has chosen not to reveal itself. Well that is about to change.
The attack on the right arm continues. Despite continued reports HQ ignores them.
Then very subtly, the right hand starts to malfunction. The fingers start to stiffen up. HQ says a touch of arthritis. Reports are streaming in from all over the territory. Attacks, aches and pains where there were none before, and no cause can be found. Again HQ puts it down to age related.
While all this is happening HQ has been very busy maintaining the territory, fighting off colds. the flue, maybe diabetes. On a daily basis.
But no one was ready for the next open attack.
The tremor appears !!!!!!!
HQ goes into stage one alert! What is it? Where did it come from? What or who has caused this?
Is this an isolated incident, is it connected to the other attacks? Reports from HQ are saying no.
HQ decides to contact the outside expert, the Doctor.
The first atomic bomb drops.
The enemy is identified
Parkinson's or PD !!!!!
HQ is rattled, the internal communications are down, HQ goes to stage 4 alert. Complete lock down, nothing in or out!
Eventually HQ gets the systems up and running , but the landscape has been changed forever.
Now the war is on.
HQ Counters with medications.
PD counters by diverting some of the medications to places it should not go, causing unwanted side effects. Collateral Damage can be severe. The support network is shaken.
This is the point in the movie when the hero looses all hope ,and is found by his mates in a seedy bar. With a lady of questionable morals. And is convinced the beautiful costar still loves him (and the costar is okay with the questional lady ????). And that only he can fly / drive/ boat the final mission.
PD attempts to sever the external support network.
HQ changes the meds.
HQ orders a vigorous exercise program.
The exercise programs seems to have PD back on its heels.
PD counters the exercise programs with unrelated pains and Dystonia.
PD attacks HQ at night, causing HQ to stay on high alert during the night.
HQ plans to counter with its own gorilla warfare. Learning music, doing puzzles, improves the communication within HQ. Old, lost pathways are bypassed and new ones set up.
PD counters by renewed attacks. The meds don't seem to last as long as they once did.
HQ orders a change in the med program.
The war seems to be at a stalemate, but each side is still active against the other.
What PD does not know is HQ is only employing a series of diversions and delays.
Slowing PD down, but with full knowledge that some day HQ can drop a bomb of it's own.
That my friends is Deep Brain Stimulation or DBS.
DBS would set PD back years! But PD has a spy network looking for weaknesses.
Funny how life works .Who would have thought one would actually look forward to invasive brain surgery.
But until then I will continue to fight the good fight .
Make sure HQ counters every PD move.
I wrote this because for the first time in a long time I've gone 3 consecutive days to the gym.
PD did not care for that, and has let me know it! An entire "off" day even though I never missed a dose. Dystonia in my hamstrings. It seems every time I find something that improves me, or eases the symptoms, PD Strikes Back! (Hmm good name for a movie).
But the number one weapon I have that PD can not counter, is the love and caring I receive from Cheryl. And my love for her. She makes the days worth getting up for.
And PD can't take that away.
Life for everyone is a series of little battles. All that really matters is not how you respond to the loses. But more importantly is how you deal with the successes. For celebrating the wins no matter how small , can make the loses seem a whole lot smaller.
The thing about PD is it's a long campaign. With the war spread out over years, not days. There will be days when you wake up and just want stay in bed. Other days when you almost realize what normal was.
But in the 6 years I have been fighting, it's winning the small every day battles that count the most.
For they lay the foundation for the bigger victories.
Remember It's only Inconvenient
With each new Dawn is a new Day
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