SuperWalk

Hello to all my Parkie buddies....... oh and the rest of you non shaken norms too. (They are shaken but not stirred.)

For those who may be new to me my name is Randy Wilcox, or as my blog handle says (do they still say handle?) The Randy Parkie. This may come as somewhat of a shock to those I have met in the last few years, but I HAVE PARKINSON'S DISEASE. A whole 7 years now. But they say to me "You look marvelous baby,  you don't shake, walk stiffly, have a cane, or a walker."  A lot of drug research, and a lot of drugs in me. Some exercise and some active hobbies (golf)  have helped.
You know it's hard to convince CRA you are eligible for the Disability Tax Credit after you hit a 250 yard drive.

Boring part:  Parkinson's Disease  is an INCURABLE  degenerative neurological disorder.
Layman's terms, "You's got it, and it ain't gettin better". However, in the last 5 or 6 years, thanks to research and donations,  there have been advancements made in recognizing the symptoms of PD and developing drugs and research into easing those symptoms.

For the last 7 years Saint John has held a Parkinson's Super Walk, the last 5 years having  been held in Kings Square. And as fund raisers go we did pretty well. But the whole pandemic thing has forced some changes.

Nonprofit agencies have been hit hard during this pandemic, and they do so much with so little.
Now is the time to give back to them.

SO WHAT  CAN DO WE DO or WHAT CAN  I DO you may ask yourself?

This year's Super Walk is on Saturday, September 12 with  live online national opening ceremonies at 11 AM ET.

But the work starts now.
Go to  Parkinson SuperWalk  (I can't believe I got the link in. It actually works. WOW!)
Now is the time to get those donations.

This is not just for those who are affected with Parkinson's and their families, anyone can walk and/or donate.

While on the site, decide whether you want to walk and get your "Walk in a Box", or simply donate.
Look around the site, there is a lot of information there.
If you do not have a printer to do the t-shirts, and are in the Saint John Region, email me at wilcox@snboe.com. and we will see how we can help you out.

For those with special marketing talents email me and I will forward the template for a 12" x 40" banner, one per walker bubble. You do the design and I will get them printed. We could get children under 8 to drop off hand made posters as well

Here's what we are going to do...

On September 12 starting at 12:00 noon we will have a station set up in Kings Square, Saint John, NB. where folks can drop off donations they have collected and register there family bubble.
Please stay within your family bubbles, then go forth and enjoy the uptown while waving your posters and banners!!

And don't forget to stop and have lunch, help a local merchant out.

Most importantly bring the following noise makers.....

Jing Tinglers

Flu Floopers

Tar Tinkers

Who Hoovers

Gar Ginkers

Trum Tupers

Slu Slumkers

Blum Bloopers

Who Wompers

Zu Zitter Carzay

Who Carnio Flunx

And let everyone know you're a Parkie!!!




 


 

Shake, Wobble and Roll

I am writing this at 6:44 pm on a Wednesday. I think it is august 12th. I started out correcting my typo's , but what the hell let her fly.
I have been takigmusic playing on in the back ground helps to coordinate the wobbless.
Makes it look (to me at least0that I am boppong to the music.
Not..
As well thisI am typing as it comes fro my brain .
right about now I would gather all my inner strenthg my meds every 3 hours. when I srARTED THE WOBBLES WERE VERY slight and only for a little while.
Well let me tell you that is not the caes. Today,. right now i ma in full wobble. Having the

Dyskinesias are involuntary, erratic, writhing movements of the face, arms, legs or trunk. They are often fluid and dance-like, but they may also cause rapid jerking or slow and extended muscle spasms. They are not a symptom of Parkinson's itself. Rather, they are a complication from some Parkinson's medications.

Okay enough of that crap.
What you just read was an experiment. What would it be like to just let go. To forget about trying  to seem normal.
Letting my freak flag fly so to speak.
This is my first experience with  dyskinesia. Oh yeah I've had the wobbles from time to time. Sometimes when we were out at a wedding, or a dance, and the music was loud I would find my head bobbing to the music. On the dance floor I just looked like the other old white guys dancing. Only a little more whiter. In the car again I would find myself moving to the music.

When I was first diagnosed I told myself there was no way I was going to be like Michael J Fox .

I don't know which is more tiring, keeping a handle on the wobbles or working through the "off funk".

Off Funk you say? What's that ??
Unfortunately there are no words in the English language that do justice to the Off Funk. But I will try.  Imagine you are standing in front of 5 doors. Behind one of the doors is your heart's desire. Behind another is your worst nightmare. The rest have nothing. You have only one choice.
Oh, and you only have a minute to choose. And there is a large man with a large knife  behind you.
NOW PICK he screams! And that instant of panic. that's it.
Now expand this to every little choice. What to have for supper, to go for a walk, go to bed, which turn to take.
And with that many choices at once the brain shuts down. And you just stare at the doors.
This happens sometimes three or four times a day.
If I get a day with only one time it's a good day.
Back to the wobbles

I am at the stage that if I concentrate I can contain the wobbles. Oh if you look at me you can tell I am wobbling. I think I am hiding it, but most people are too polite to call me out on it.
Be right back.

Okay I'm back. Had to get Nick from work.
Where was I?
Oh yeah the wobbles.
I wish I could take credit for the "wobbles", but that goes to the bravest, most upbeat,-despite having everything bad thrown at her, person I know.   Pam.
And I think wobbles works a lot better than dyskinesia.
As the definition says, the wobbles are not a symptom of Parkinson's, they are the price you pay for trying to get back to normal.
Basically.
You take the Levodopa to add the dopamine that your body no longer produces back into your brain .
By taking the Levodopa one can move, talk, play piano, play golf.  Everything you tend to take for granted.
But, there is always a but.
The way it was explained to me (to be said in an east Indian accent) as the disease progresses over time, in order to keep moving, you have to take more Levodopa. And with long term usage eventually your body cannot absorb all the dopamine and some of that excess dopamine goes to parts of the brain it should not. (Stop accent)
For me, this happens later in the day. Lately around 6 pm to 7 pm. Tonight is worse. I am still wobbling and it is 8:30.

Eventually the wobbles will be all the time. I have learned to accept this now. Seven years ago not so much.  I suppose I could try to cut back on my Levodopa, but it feels so good. That feeling of not feeling the Parkinson's. To feel like you are normal.  To be able to just sit down anytime at the piano and butcher Layla. And not have to wait for that perfect moment when your fingers will move.

It's now 9 pm. My last dose at 6 pm is wearing off.
The wobbles have pretty much gone away.
I am exhausted.
I know what you're thinking ... no way it took him 30 minutes to type one paragraph .
Some days yeah it does.

Hey Micheal "whats shaking "