Movapo Part 1

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.

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!