Thursday, December 12, 2019

Things to Avoid Saying to a Person With Parkinson's Disease



 (Written originally for The Northwest Parkinson's Foundation.)

What can I say? It’s a free country. You can declare, utter, intone or even verbalize whatever you like (almost). But if you want to spare your friend/acquaintance/loved one who has Parkinson's some silent tooth-gnashing, here are a few things to avoid saying to them.

1.) “Boo!” Those of us with Parkinson's are more easily startled than those of you without it. This is probably has to do with the autonomic nervous system, its connection to the pre-frontal fizgig and the hemispheric laterality of the whoopsy response in our lizard brain. Whatever. I just know that I am more susceptible to being startled than I was before Parkinson’s set in. So, as charming as the novelty of seeing a Parkinsperson jump may be, try not to startle them deliberately. They are anxious enough as it is.

2.) "Parkinsperson" I thought this word up myself to avoid the constant repetition of the phrase “People with Parkinson’s” or the use of the dreaded term “Parkie” when writing about Parkinson's. But “Parkinsperson” identifies the individual as primarily defined by their disease. Parkies hate that, and who can blame them? Furthermore, it’s just a plain ugly word. What was I thinking? My apologies.

3) “Parkie” Some love this word, some hate it. Those who hate it really loathe it. Rather than risk more tooth-gnashing, surely you can think up something better. (Note: “Parkie” is also an Alaska term used by indigenous people to refer to their Winter coats. There is nothing potentially or actually offensive about the use of the word in this context. Isn’t language fun?)

3.) "Hurry up!” It’s hard not to say this, I know. But slowness of movement is one of the cardinal symptoms of Parkinson’s. It more than goes with the territory, it IS the territory. The person you are urging to make haste is probably already hurrying, at least, for them. When I hurry is when I am most vulnerable to falls. So weigh your immediate desire to get going against the time a trip to the emergency room will cost you, not to mention the cost in actual money. If you find this annoying, try silently gnashing your teeth.

4.) “You’re looking good” I understand this is meant as a compliment, however, there is an unspoken thought that goes with it. That thought: you have a dread disease and should look like absolute crap. Well, give it time, and someday we’ll all look that way, In the meanwhile, consider a simple “How nice to see you.”

 5.) “If anyone can beat this disease, you can.” again, I understand this is meant well. But what are you asking of the person who is sick here? For thousands of years, millions of people have had Parkinson’s, and as far as I know, not one has “beaten” it yet. So you are asking the impossible of someone who is already struggling. Furthermore you are burdening them with the obligation not to let you down. Instead you are putting them on notice that they are somehow special and therefore duty-bound to rise like a phoenix from the ashes. Even further, what does it mean to “beat” Parkinson's? To be symptom-free forever? To live as long as you can as well as you can?  To be made whole in flesh and spirit? How do we keep score? And who is the score keeper?
To sum up, let’s construct a sentence using all our unfortunate words and phrases in one grandly offensive tongue stumble, as an example of what to avoid when chatting with a person who has this disease.  (Caution, to those of you who have Parkinson's, the following may be triggering.) Here goes…

“Boo!... Hey, you’re looking good! But you better hurry up, Parkie! If any parkinsperson can beat this disease, you can, so get going!”

If that sounds awkward to you, think how it sounds to a person with Parkinson’s.

Thursday, August 15, 2019

August Parkinson's Reminders for the Anchorage Area

With the regularity of the Moon circling the earth, the Sun rising and setting, the very stars in their steady courses, the third Saturday of the month is rolling our way. And that means it's time for our hardy band of northern Parkinspeople to meet! I will be handing off the talking stick to Jane Mara who has agreed to facilitate the meeting. So show up for something new this weekend at 3:30 on the fifth-floor Tundra Lounge of the Anchorage Pioneer home.

And another thing , we will also have a deluxe bonus August meeting with very special guest Jennifer Riedel, Associate Director for advancement at the MJ Fox Foundation for Parkinson's Research, Wednesday, August 21, 6:00 pm at the Pioneer home, up in the Tundra Lounge. Jennifer will be sharing the latest research updates from the Fox foundation and this promises to be a real barn-burner of a meeting. Don't miss it!

Furthermore... The September meeting will not take place in its usual form, Instead it will be pre-empted  and augmented by the Parkinson's Live Well, Alaska program, a full day of presentations from local, regional and national PD savants, experts and wisepeople.  It will EDUCATE, INSPIRE and EMPOWER you in your daily coping with PD.  It all happens Saturday, September 14, 10:30 am to 3:30 pm at the Anchorage Senior Center, 1300 East 19th Ave in Anchorage Pre-registration required. You may pre-register here  Or give them a phone call (206) 695-2905.  I will have brochures for the event at our upcoming meeting.

Festinate Forward,

Peter

Wednesday, July 31, 2019

Bonus Meeting of the Anchorage PD Support Group! Update from the MJ Fox Foundation

The Anchorage Parkinson’s Disease Support Group invites our members and care-partners, visitors and new friends who find themselves navigating Parkinson’s disease to join us on Wednesday August 21 from 6:00PM – 8:00PM for a special presentation. The presentation will be held in the Tundra Lounge (5th Floor) at the Anchorage Pioneer Homes located at 923 W 11th Ave Anchorage, AK 99501).

Associate Director, Jennifer Riedel, of The Michael J. Fox Foundation for Parkinson’s Research (MJFF) will present on the following topics:
  • an overview of MJFF’s mission;
  • an update on promising Parkinson's disease research including disease modifying and symptomatic treatments
  • the latest legislation that impacts the lives of people with Parkinson‘s;
  • and information on how to get involved with clinical research through Fox Trial Finder and Fox Insight.

The Michael J. Fox Foundation for Parkinson’s Research is dedicated to finding a cure for Parkinson's disease through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson's today. Since inception in 2000, 88 cents of every dollar spent by MJFF has gone straight to grants and initiatives to speed a cure for Parkinson's. To date, the Foundation has funded more than $900 million in research to bring an end to Parkinson's disease. For more information, visit www.michaeljfox.org.

Sunday, July 28, 2019

Wile E. Coyote, Spinoza, PD and Me. New Post over at the NWPF Community Blog






"The moment I realized there was going to be trouble, there was no time left to avoid it. I was rolling along at a respectable rate on a favorite part of a mid-town bike path, a bridge over a bright stream flowing through a lush greenbelt. The sun was out and the beta endorphins were flowing.

As I cruised across the bridge, my mind wandered. So did my bike." (Read the rest of this grisly tale here)

Sunday, June 30, 2019

Coming Sept. 14, Parkiepalooza! (Better Known as Parkinson's Live Well, Alaska)

September 14 will be a good day to have PD in Anchorage. Jennifer Gilleck of the Northwest Chapter of the American Parkinson's Disease Association has been planning an all day Parkinson's symposium, and the list of speakers and topics looks great. It's a mix of local and national experts talking about different aspects of PD. So far, the tentative schedule calls for talks on

• The importance of movement, with Doctor Nate Coomer, physical therapist
• Treating non-motor symptoms, with Dr, Pravin Khemani, Movement Disorders Neurologist
Swedish Medical Center Seattle, WA and Dr. Graham Glass & Genevieve Sykes Movement Disorders Neurologist Peak Neurology, Anchorage, AK

• Three short talks from people with PD on the subject "My PD Journey" 
• Motor fluctuations in Parkinson's Disease Dr. Pravin Khemani, Movement Disorders Neurologist Swedish Medical Center Seattle, WA
•  Surgical interventions in PD with Dr. Ryder Gwinn, Neurosurgeon Swedish Medical Center, Seattle, WA
Breakout sessions on Dance, yoga, Rock Steady Boxing and more

•Final Session "What's next, a research update" followed by a Q&A with all the speakers.

 The event will be held at the Anchorage Senior Center, 1300 East 19th Anchorage, AK 99501
from 9:30 - 4:30. Cost is $30.00 per person, $20 per person if you sign up before the end of the day, August 15. You can register  here If you have questions, or you can either email or call on the phone (206) 695- 2905 

Tuesday, June 18, 2019

Monday, June 3, 2019

Hungry? Hang in there, The Ever-Festive APDSG SUMMER POTLUCK Approaches!

Summer, as we know it here in Anchorage-By-The-Sea has begun, and who knows, by the time you read this, it may already be over! NEVERTHELESS, The Anchorage Parkinson"s Disease Support Group will hold its Umpteenth Summer Potluck Saturday the 15th of June, 3:30pm. What to bring: whatever you think would be an appropriate dish. It's a pot luck, let's test that "luck" thing. What not to bring: consider leaving your squirt guns and leaf blowers at home. Whom to bring: family and friends, anybody involved with Parkinson's. Where to Bring It: Our home, the Singing Fiddle Ranch is located at 9601 Elmore Road. To get there head for the intersection of Abbott And Elmore roads, in bucolic South Anchorage, on the Lower Hillside. Once at the intersection, go South on Elmore about 1/4  mile,  begin a short steep climb up a hill. About halfway up, look for our lonnnnnng driveway on your left. You should see the driveway just after the end of the neighbor's  chain-link fence. Proceed east, down the lonnnnng driveway, find ample parking near the end and at the end. Park. Exit your car, carry copious quantities of delicious food to the West lawn, where we will be whooping it up in typical rowdy Parkinson's style until the wee hours of Sunday morning or until 6:00 pm, whichever comes first. In case of inclement weather, we will hold the festivities inside.The definition of "Inclement" will be the prerogative of management. So pray for clearly clement weather thus avoiding any unseemly quarrels due to close judgement calls. I think that covers it, I hope to see you there!

Your Benevolent APDSG Ovrlord,

Peter

Friday, May 17, 2019

No Meeting Saturday, May 18, Meetings to resume in June

Hello friends, There will be no meeting of the Anchorage Parkinson's Disease Support Group this Saturday, May 18, as I am still down South. But meetings will resume in June, with our annual Summer Potluck. More info on that to come. I hope you all are doing well and look forward to seeing you in June!

Best,

Peter

Thursday, April 18, 2019

No Anchorage Suppport Group Meeting this Saturday, April 20

Hello all, this is a reminder that I am snowbirding in Washington State, so we have no formal meeting this Saturday. The usual space, the Tundra Lounge is still reserved in the Pioneer Home, so if you wish to meet informally and just chew the PD fat, that's fine. I'll be down here through the month of May, so our next official meeting will be the Summer Potluck in June.

Festinate forward,

Peter