Monthly Archives: September 2018


A New Parkinson’s Vocabulary – Humor

From: https://nwpf.org/stay-informed/blog/needed-new-parkinsons-vocabulary/

Needed: New Parkinson’s Vocabulary

Friday February 26, 2016

One of the less noticed challenges of Parkinson’s Disease is mastering the arcane vocabulary that describes the particulars of the disorder. If we want to speak clearly with our doctors and others about what ails us, we have to use strange words like “dyskinesia,” “festination,” “dystonia,” and “bradyphrenia.” Words that are fun to say on their own, but even more fun to rattle off as part of a sentence. “In spite of severe dystonia, she managed to festinate across the room.”

I like showing off my vocabulary as, much as the next person, (ok- I like it even more than the next person) but why do the doctors get to have all the fun making up the words? Plus, there are many word-worthy phenomena related to PD that they have overlooked! Who controls language controls how we think about about whatever it is we are talking about. Time for a little patient empowerment.

With that in mind, I offer some new PD words for us to consider adding to the current store.

“Pinballing” this one was coined by my wife to describe the tendency I and other people with PD have to walk erratically, knocking into shelves, signposts, and one another as we lurch through life.

“Bladderdash” adapted from the free-wheeling speech of Alaska Rep. Don Young,  describes the desperate process of finding a bathroom, frantically fumbling to unbutton and unzip your pants, and whipping down your underwear in time (you hope) to empty your urgent bladder.

“Murmur” of PD patients. A collective noun for a bunch of people with PD.

“Parkanoia” the feeling that people are covertly observing your PD symptoms. And judging you for them.

“No Parking Area” A place or circumstance where you feel uncomfortable exhibiting Parkinson’s symptoms, like in a restaurant, on a plane, in a park, at school, in church, at the grocery store, in a barber shop, on the subway, at a movie, attending a concert, at work, in the gym, at the library, buying shoes, on a date, at the pool, in court, at the ball game, in a bar, at a museum, with your neurologist, etc… etc… etc…

“Depillitated” Caught without access to your pills when you need them.

“Repillitated” To have access to your pills restored.

“Ghost Dose” Skipping a pill by accident, then grinding to a halt.

“Parkinstoned” To appear to be drunk or high due to PD symptoms such as lurching, falling, and slurred speech.

“Dopameanie” A perfectly nice person with Parkinson’s Disease who is mistaken for an anti-social jerk because they don’t smile due to facial muscle freezing.

“Parkinspotting” The habit of mentally diagnosing random strangers who lack arm-swing, have soft, hoarse voices, and/or walk slowly, but are clueless about the tell-tale symptoms of PD they are exhibiting.

Think how much easier these new words will make life. When someone asks what you did today you can say “I went to the mall to do a little Parkinspotting, and suddenly realized I had ghost-dosed my last pill. Wouldn’t you know, I was depillitated, I’d left them on the nightstand at home. Naturally parkanoia kicked in, and on top of that, I had to bladderdash to the restroom. Of course, by then I was totally parkinstoned and pin-balling all over the place. Security eventually threw me out, but I’ve been repillitated, and I’m fine now., except for a few bruises.”

See how easy and fun that is? If you have any custom-made PD words you think others would find helpful, don’t be stingy, please share them via the comments field below!

Peter Dunlap-ShohlPeter Dunlap-Shohl
NWPF Blogger


11 Books That Shine a Light on Parkinson’s Disease

Parkinson’s disease directly affects as many as one million Americans, according to the Parkinson’s Disease Foundation. When you consider their families, friends, and colleagues, the number of people truly touched by this disease is remarkable.

Whether you’re facing a Parkinson’s diagnosis or supporting someone living with the disease, education and community are key. Understanding the disease and what people living with Parkinson’s go through is a crucial first step in lending useful support. The following list of books is a perfect resource for those directly affected by the disease or even just those curious about it.

https://www.healthline.com/health/parkinsons-disease/best-books#1


December 8, 2018 – Holiday get together

Please join the Capital District Parkinson’s Support Group for our
Annual  Holiday Get Together

Saturday December 8, 2018 1 – 4 PM

Terrace room at Beverwyck Senior Center (directions

RSVP before December 2nd

We will have holiday appetizers, hot and cold beverages and desserts as well as fun activities, gift exchange and music.

If you would like to take part in the gift exchange, please bring a gift valued around $10 or less.

Cost: $15 for singles and $25 for couples.

Payment to be made by cash or check on the day of the party. This would also be a good time to pay annual dues. Annual dues, $20/person or family.

If paying by check, make payable to “CD Parkinson’s Support Group”

Questions? Contact Ian Wing: iwing5082@hotmail.com or phone 518 794 0237

RSVP by submitting this form

 


FREE Parkinson’s print materials available

There are a ton of great, FREE Parkinson’s print materials available – you just have to know where to look!  This is by no means a complete list however these items are particularly useful.

Davis Phinney Foundation Every Victory Counts book 

Parkinson’s Foundation “Aware in Care” kit, Caring and Coping guide, other handbooks

  • Visit www.parkinson.org
  • Click the “Ways to Give” tab at the top of the page
  • Click “Shop” (everything is free)
  • Select the item(s) you want to receive
    • For booklets, you have the option of downloading as a PDF
  • Click Add to Cart
  • When you’re done shopping, click “Checkout”
  • Fill in the required information.  If you do not want to receive emails from the PF, make sure to uncheck that box.
  • Need assistance or don’t have internet access?  Call 800-473-4636 to order.

APDA Materials

  • Visit https://www.apdaparkinson.org/resources-support/download-publications/
  • To download DIGITAL versions, select the booklet(s) or supplement(s) that you want to download.
  • To order PRINT copies, click the link near the top of the page that says, “You can also order print publications directly from us using this form.”
    • Fill in the required information.
    • Once you do that, available publications will be displayed.

 online education, I would suggest the sources below.  Please note that the webinars are archived on these sites so you do not have to view the webinar during it’s “live” broadcast.


Spikes Trikes 10% off all purchases

Spikes Trikes is offering 10% off all purchases for anyone with Parkinson’s until September 30, 2018. Feel free to contact him on (518) 842-4827. His website is www.spikestrikes.biz. My husband (Bill) and I (Marie Thorne softballmom300@yahoo.com (518) 810-8483) both have trikes and are more than happy to meet up with anyone who would like to try one. Bernie (owner of Spikes Trikes) is also happy to have you try the ones in his shop to see what would best work for you. I am excited to tell you that they are fun to ride and a great way to exercise. You can get auto assist on the trikes which you can ride without the assist, with just some assist and with full assist.
Spike’s Trikes | Where The Fun Begins

www.spikestrikes.biz
Welcome to Spikes Trikes, a Premiere Terra Trike Dealer, where customer service and satisfaction is our top priority.We have been selling and servicing recumbent trikes in the capitol region of New York since 2013. Stop in and see us today.


Hope Soars Gala 2018 – cancelled

The Hope Soars Gala will not be held this year.
Hope Soars underwrites many of the PD programs in the Capital District so that they are able to be offered at no or low cost.  Hope Soars also contributes to Parkinson’s Disease Research at Albany Medical Center’s Movement Disorders Center.
The gala funds a large part of this. Since it is not being held this year  this will probably stretch the organization’s resources a bit thinner than other years. While they would always welcome donations at any time, please keep Hope Soars  in mind especially this year if you should find a little extra in your wallet or pocketbook. The organization isn’t asking for this, but we know that it would be welcome, and it supports all of us, so please keep it in mind.
And, if you haven’t checked out any of the great PD programs they support, Please Do!  You can find all of them on www.hopesoars.org.  Try out PD yoga, boxing, dance, peddling4parkinsons, special events like the walk….it’s all there.
Thanks!
Cindy Petker