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

Tuesday, April 2, 2019

Mash-up: Parkinson's and Poetry Month



Yes. it's Shake-Speare, You've been warned!

It’s Parkinson’s Disease awareness month. It’s also Poetry Month. Furthermore it’s the cruelest month, according to Poet T. S. Eliot. (Who did not have Parkinson’s) So what does this all add up to? Time to write cruel Parkinson’s poetry, of course! 8, count ‘em, 8 PD limericks  here 

Saturday, March 23, 2019

Good-bye, Susan, Another Member of Our Support Group Departs

​I am sorry to pass along the word that another beloved member of our support group, Susan Wong, has died. Below is a note from her daughter, who was with her to the end. Susan was not a person to whom illness simply happened. She was never a bystander in her own care. She looked for ways to cope and was there to help others, even though they contended with less ferocious adversaries than she. More than one member of the support group mentioned to me that Susan was an inspiration and role model. I add my name to that list.



Dear friends –

Mom died this morning. Before we gently let go of her hand and watched her go, we provisioned her journey with our most profound love and gratitude. Enough, we hope, to sustain her for eternity (or at least until we meet again and can replenish her supplies).
 
These past months, we were given the gift of time together, during which we shared in deep conversations about love, life, and death. We read books, listened to good music, wrote, laughed, cried, reconnected and reminisced. We had the rare and frightening advantage of knowing that time was running out, and I am proud to say that we took advantage and did our best not to waste it.

Thank you for the letters, emails, texts that you've sent. I read as many of them as I could to Mom in her final days. In the coming days, I hope we can still share with one another even a few stories and pictures from her spectacular life. An overwhelming flood of which are already brimming in our own minds, as well as our inboxes. In one remembrance, an old friend wrote to me this week saying that it seemed she had lived many lives within this one lifetime. As I reflect, I agree that this indeed seems true, despite the fact that it was also cut painfully short. 

Right now, in this moment, I feel like I could fill volumes describing her life, her character, her dreams and accomplishments, her hardships, even her missteps and imperfections (maybe one day I will). But for now, I will just say that it has been an absolute honor and privilege to share in this life with her. She shaped for me a magical and inspired worldview and I will spend the rest of my life endeavoring to embody and to raise my child with the values she instilled. 


SLEEPING IN THE FOREST by Mary Oliver
I thought the earth
remembered me, she
took me back so tenderly, arranging
her dark skirts, her pockets
full of lichens and seeds. I slept
as never before, a stone
on the riverbed, nothing
between me and the white fire of the stars
but my thoughts, and they floated
light as moths, among the branches
of the perfect trees. All night
I heard the small kingdoms breathing
around me, the insects, and the birds
who do their work in the darkness. All night
I rose and fell, as if in water, grappling
with a luminous doom. By morning
I had vanished at least a dozen times
into something better.
With all of our love to each of you,
Shina

Friday, March 15, 2019

March Support Group Meeting Cancelled

Hello friends, I am sorry to announce that there will be no meeting of the Anchorage Parkinson's Disease Support Group this weekend. I am not in town and was unable to talk anyone into hosting. If you wish to meet informally, the space at the Pioneer Home is reserved and should be available. best, Peter

Friday, March 8, 2019

Inattention and Parkinson's: Walking on the Knife Edge

The following is from my blogging gig with the Northwest Parkinson's Foundation, republished by special arrangement.

 
 
A sudden stinging pain. A sickening realization: the car door was slammed on the fingers of my left hand. An instant of disbelief, how could this be happening? A struggle to beat back panic that grew with each nanosecond my captive hand was clamped in the merciless metal jaws of the door. A feeling of helplessness when it became clear I could not free myself. An urgent plea to my wife to OPEN THE FREAKIN’ DOOR!!!

No matter how many layers of bubble wrap you cover yourself with, no matter how carefully you choose your seat, no matter how deliberately you plan your route, there will be a moment when you let your defenses down. You might be too tired to notice the warning signs. You might be distracted by an attractive nuisance. Perhaps it plain may not occur to you that leaving your hand in the path of a door that might suddenly slam shut is a recipe for a pain sandwich. Or you may simply forget to keep your guard up, and then boom!
You are rudely reminded of you vulnerability.

This is true of anyone, but the consequences of inattention are more grave if you already have a serious condition like Parkinson’s Disease. Fall from a moment’s distraction, and you may break a hip. Then it’s off to the hospital, which as my father (a doctor) was fond of pointing out is no place for a sick person. Next thing you know you’re fighting for your life with an infected bed sore, and they’re measuring you for a coffin.

The thing is, not only is it impossible to avoid the vagaries of life, the random disasters of the universe, and plain old bad luck, even attempting to avoid them requires a level of paranoia that most of us can’t sustain. I don’t want to live a life of constantly sizing up situations for worst-case scenarios, and waiting for asteroids to drop out of the sky. Living in a cringe can lead to all kinds of leg-cramps, and besides, it’s exhausting. If I’m going to be exhausted, I want it to be from spending too much time on my bicycle, or from staying up too late playing music with friends. I sure don’t want to waste my time on the weariness that comes from hand wringing 24-7-365.

And speaking of wringing hands, my wife finally reached the release for the stubborn door that refused to relinquish my stinging fingers. I jerked my hand free, and gave it a close, cautious inspection, fearing the worst. The inspection yielded the joy of finding my fingers were still attached to my hand, and even more miraculously, were apparently still quite operative, having somehow escaped serious damage in spite of deep pinch marks. They have gone on to stage a complete recovery.

So it was a reminder. Bad things will happen unforeseen, painful and unpreventable. But maybe we are not as fragile as we think, Parkinson’s Disease and all. With Parkinson’s, I fall far more often than I ever thought I would. And it can be scary and consequential. But along with that, there is something else also unforeseen. I may fall more often than I would without PD, but I get up more often, too.

Wednesday, February 20, 2019

Research Opportunity: Florida State Questionnaire on Satisfaction With Parkinson's Treatment

Research opportunity: If anyone is interested in helping a Florida University student who is collecting information on patient and care giver satisfaction with Parkinson's treatment, they can do so by filling out the questionnaire found here https://ufl.qualtrics.com/jfe/form/SV_ebxUFHZm8SdDCKN

Tuesday, February 19, 2019

Rest in Peace, Sherri Hadley, A Woman Who Did Not Go Quietly

Sherri at last Summer's Potluck
Hello friends, It is my sad obligation to notify you of the loss of one of the members of our support group, Sherri Hadley. This news comes from her friend, Michele Champion, who wrote yesterday, "Sherri Hadley died peacefully last night. She was not alone and several of us had been keeping vigil for many days. She was not in pain. I know that the support group was very important to her because when she began to drop activities, she always wanted to come to the support group. You all meant so much to her. I will thank you,  as I know she would, for the love, acceptance and support she felt from all of you.

A memorial service will take place later, either March or April. I will keep you posted."

Sherri led a vigorous life before being afflicted with Progressive Subnuclear Super Palsy, a little-understood disease akin to PD but far more virulent. As a civil engineer, she traveled to remote areas  throughout Alaska overseeing projects to improve the lives of locals. As an Old-Time fiddle player she was known as one of the finest practitioners of that genre in Alaska. As a hard-headed, logical woman, she agreed that the celebration of her life should be held while she was alive, so she could enjoy it. As I wrote three years ago " In one of the neatest tricks since Tom Sawyer attended his own burial service, Sherri Hadley went to her own celebration of life. The celebration took the form of a bittersweet and raucous Old-Time Fiddle jam. It was attended by musicians from across the state ... Sherri did not retreat into denial. Instead she made a memory for herself and for her large circle of friends that will be a comfort to all who took part. The memory I will take with me is of a woman brave enough to not let imminent death rob her of joy. Bravo, Sherri!"

I was told later that it was the biggest Alaska gathering of Old-Time musicians in living memory. 
There is video of the celebration here

You can read more about the party, and about Sherri in an article that appeared here in the Anchorage Daily News.

Sherri bore her difficulties with courage and grace. Her circle of friends was amazing, and a testament to her qualities as a person. She lived a unique and beautiful life, and it is good to know she had her friends at hand to see her through to the end.
Bravo Sherri, indeed.

Monday, February 11, 2019

Anchorage Parkinson's Support Group Meeting for February

Hello hardy northern Parkspeople, there will be a meeting this Saturday of  the Anchorage  Parkinson's Disease Support Group. The topic will be humor and Parkinson's Disease.  Everybody bring at least one funny story to tell concerning Parkinson's Disease. What's that you say? There's nothing funny about Parkinson's? Well I disagree. You don't believe me? Then come to the meeting this Saturday the 16th of February, 3:30 in the Tundra Lounge on the fifth floor of the gracious and stately Anchorage Pioneer Home and I'll prove it! You've been warned!

Wednesday, January 16, 2019

It's Support Group Meeting Time

Hey friends, here's the PD buzz for January. We will have a meeting January 19th at 3:30 as we always do the third Saturday of the month. But it's not enough merely to meet. What is our agenda? Glad you asked! We will be talking about PD podcasts! What is a podcast, some weird side effect of an obscure Parkinson's Disease medication? Good guess! But no. A podcast is like a radio show that you can listen to on your smartphone, tablet, PC etc whenever it is convenient for you. There are a ton of them out there concerning Parkinson's Disease. We'll listen to a few and see what value they have in your PD tool Kit. And if you already listen to a favorite PD podcast, you can share it with the group.