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.

Can Comics Enhance the Practice of Medicine? A study using "My Degeneration, a Journey Through Parkinson's suggests "Yes"

Copies of "My Degeneration" await readers at Fireside Books in Palmer in 2015

This past summer, I attended a conference on "Graphic Medicine" an area of the medical humanities that considers the intersection of comics and medicine. It's a discipline that rests on the assumption that through creating and reading comics, patients, doctors, nurses and others involved with the health care system can come to a better understanding of what they are doing, and the effects it has on outcomes. This should result in better care. But can a better understanding of delivering care for complex medical issues result from reading... um, ... comics?

That's what Dr Michael Green and a team of researchers from Penn State University aimed to find out. And, in a high-stakes move for me, they chose my book-length-comic memoir "My Degeneration, a Journey Through Parkinson's" as the test subject of their- study. Pressure? What pressure? Nothing at stake here. Just the legitimacy of the work being done by the excited and enthusiastic attendees of the conference. Many of whom were assembled in the Dartmouth College classroom where the team was unveiling their results. I could imagine the wrath that would be turned on me by the classroom full of Graphic Medicine practitioners, fans and publishers (including my editor) if the book failed to deliver on the mission.

Because I'm a comics creator, that imagining took on a downright operatic exaggeration of tragedy and pathos that I did not look forward to experiencing in real life, featuring me in the role of comics martyr. So I made a mental note about location of the nearest exits, and braced myself.


The presentation began with a statement of the study question "Does reading the book help health care providers better understand the lived experience of patients with Parkinson's Disease? Subjects were recruited, given a copy of the book, filled out a questionnaire, reconvened for a discussion four weeks later and filled out the questionnaires again, prior to the discussion.

The results for the small group of medical professionals that took part were encouraging. Their scores for questions like "how confident are you that you are able to...

• understand the stigma that people with Parkinson's Disease experience?
•understand what it's like for a patient to live with Parkinson's Disease?
•understand the impact of PD on family members
•help patients cope with PD?"

 all went up between 10 and 17 points!

In addition, their experience with "My Degeneration" left them with enhanced esteem for comics. Participants views shifted positively when choosing between attributes such as "valuable" and "worthless", "good" and "bad" and, my favorite, "smart" and "stupid"to describe comics. No words minced there!

Major themes that emerged from quantitative analysis were

• The book provides a meaningful way for healthcare professionals to learn about the lived experience of patients with PD 
•The comics form successfully engages healthcare professionals in ways that differ from other mediums
•The benefits of the book extend past the healthcare team

The researchers found that "My Degeneration" had a "profound effect" on clinicians who treat PD, and helped them have greater confidence in their treatment of patients. (although it did not seem to enhance their clinical knowledge about Parkinson's. Hmm...)

This is an encouraging indicator that those of us practicing in this medium are on the right track. (other indications this is so? Testimonials by Amazon readers to the value of the book. Not as rigorous as the research by the Penn State team, but pretty darn heart-warming to this author.) And speaking of rigor...  

Researchers cited the following limitations of their study:

•Single study site
•Small sample size
•No comparison with control group
•Self-selection of of subjects could lead to sample bias

So this is not an air-tight study, but more a sign this is a promising direction for further research. It suggests that comics, or one comic, anyway, can have a fruitful and unique role in promoting relations between medical professionals and patients. In my experience, this can only be a good
thing.

 I'm grateful to the researchers for taking the comics seriously, and for selecting my book as a test-case for study. I look forward to hearing about the further research they have planned to be focused on how patients respond to the book.

Support Group Meeting Dec 15, The return of the Holiday Potluck!

Ho!...  H o ! . . .  H  o   o    o     o  !  .  .  .  Happy holiday greetings to you wherever and whomever you are. In case you hadn't noticed, another year has whizzed by. This means it's time for yet another holiday potluck, so let's mount up the reindeer and bring our favorite dishes to the Pioneer home at 3:30 Saturday the 15th of December in the fabulous and fashionable Tundra Lounge on the fifth floor of the swank and elegant Anchorage Pioneer home. We will provide cups, flatware de plastique, and paper plates, bowls etc. You bring your festive holiday selves and something delectable to eat, whatever that means to you.  We will have instruments on hand to accompany some songs of the season, so practice your loudness, the better to raise a joyful sound up through the darkest hours of Winter.

Your faithful Anchorage Parkinson's Disease Support  Group emcee,

Peter

Float like a lead pipe, sting like a puffin,
Boxing for Parkinson's is way better than nothin'
I explain it all here on the Northwest Parkinson's Foundation Blog

Meeting Saturday, Nov. 17,

Hello friends, Yes, we will have a meeting this weekend, and yes, in a break with recent practice, I plan to attend. Radical, I know. On the agenda for this gathering, we will catch up on the replacement of yours truly as august  leader and Grand :Poo-Bah of the APDSG. Second, The Seattle branch of the American Parkinson's Disease is in the early stages of planning a PD symposium in Anchorage next fall, and they would like to know what  topics you would like to see covered, so we'll talk about that, and whatever else is on your minds. Note: we now meet in the Pioneer Home EAST lounge, so instead of making a left when you exit the elevator on the 5th floor, make a right,

See you soon,

Peter

PD and Horse Sense, a Post from The Northwest Parkinson's Community Blog

Here is a reprint of a recent post I wrote for the Northwest Parkinson's Foundation Community Blog. You can still have adventures even with Parkinson's.

How did I spatter all this horse manure on my freshly laundered clothes? My wife was away for an extended cross-country adventure. I remained behind to care for the homestead, including her two horses. This may seem like a heavy responsibility for a guy with Parkinson’s, but as a life-long Westerner, I have a natural way with members of the equine set.

My assignment was simple. I was to make sure the horses got enough water and hay to remain alive and reasonably happy until Pam’s return. The goal changed, as goals will over time. After two late-night escapes and one brazen, full-daylight jailbreak, the aim became my survival of the horses rather than their survival of me. This meant luring them into the pole shed for the evening so I didn’t have to worry about them testing the fence while I snatched what we cowboys call “a little shut-eye.”

The traditional way of rounding up our two-horse herd is to tempt them with that irresistible, mouth-watering delicacy, hay. We keep our hay in the hay shed downhill from the pole shed where the horses shelter at night. You have to take a load of the itchy stuff up the hill while the two horses gang up, and try to rip mouthfuls of it away from your arms. If they pull enough hay out on the way uphill, they will be maddeningly slow to enter the shed as they Hoover up the bits that have dropped.

To avoid the delay caused by their marauding hay raids, I have found that the most effective tactic is to run as fast as possible up the hill with a surprisingly heavy payload of hay and fling it in a mighty arc to the back of the stall, with the horses in hot pursuit. Then I secure the gate while they happily mow through their high-fiber meal. This works great in theory, but in practice much depends on your execution.

The evening run began well. I burst from the sliding door of the hay shed, rammed it shut and hustled up the hill through a light rain, one step ahead of the ever-hungry horses. But disaster struck just short of the pole shed gate when my boot tip caught in a heavy mat. I sprawled chest-first into the ground. Luckily, the impact was softened by the hay I had been carrying, along with a cushion of wet manure the horses had thoughtfully deposited earlier.

I scrambled to my feet and brushed as much hay into the pole shed as I could divert from the two quadrupeds, who obligingly wandered into the shed with minimal encouragement. I latched the gate and looked with dismay at my jeans and coat, now besmirched with horse dung and clinging wisps of hay.

Bitterly I cursed my fate when my self-pity was interrupted by this thought. “You are a 59 year-old man with Parkinson’s, diagnosed 16 years ago, who just ran up a hill carrying an armload of hay while being chased by half-ton ravenous beasts, and you’re upset over a little horse crap on your pants? The fact that you could do any of that is worth celebrating, don’t miss the magnitude of this victory just because there is a bit of dung on it.”

So, rather than cursing my lonely fate I decided instead to embrace it, manure and all. Instead of being miserable, I took pride in my crap-covered accomplishment. It's true that, as a Westerner, I have a way with equines—and as a person with Parkinson’s, I am a hoarse whisperer.

Pete's Parkinson's Portraits, Alan Alda

Peripatetic Pete, Looking for a Volunteer

Greetings Parkinspeople and those who love them, I'm looking for a volunteer to host our next two support group meetings as I will be away visiting family far, far from Alaska. If you can attend the meetings, greet newcomers and help foster a discussion about Parkinson's Disease, this is the volunteer opportunity you have been waiting for. Well wait no longer! Take that first step into the Parkinson's limelight! To quote that well-known philospher Dr. Ferris Bueller "Life moves pretty fast you don't host a Parkinson's support group meeting, you could miss it." So who wants this once-in-a-lifetime chance? Please contact me if it's you. Bueller?... Bueller?....

​In other news the  PD and speech group led by our intrepid  Ann Ver Hoef  will meet soon. here is Anne's message about that: ​

I hope this finds you all well.  The summer is flying by, as usual.  Never enough time to get outdoors….but I am heading out for a backpack trip in the Wind River Range in WY and be gone Aug 2-12. 

We have our next PD Communication Group on Monday, 8/13/2018 from 3:30-5:00.

We will meet in the Ivy Room, downstairs on the First Floor at AK Regional Hospital.  This is in the downstairs of the regular hospital building.  If you park in the “back” of the building, and come in the tall atrium entrance, you head to the left down the hallway and there are the Ivy rooms.

Be prepared to share some of your summer experiences! WOOOHOOOO!

And this just in... Alan Alda says he was diagnosed with PD three and a half years ago, and that he is doing fine.

Pete out (way out!)

Our July Support Group Meeting: Annual Parkinson's Pinic

 AN INVITATION 

Summertime, and the livin' is easy... unless you have Parkinson's Disease, in which case the livin' is difficult, no matter what the season. It is however, easier than the livin' in Winter, and that calls for a celebration. But how to acknowledge this season of nature's bounty and torrid 80 degree heat? I know, let's have a potluck! It's fun, low-stress, and more important, it's a tradition. So, without further hemming and hawing, throat clearing and fidgeting, preambles, introductions or brief remarks, I am happy, proud, pleased, pumped, excited, psyched, thrilled to the gills and grateful to announce the social event of the season, The Annual Anchorage Parkinson's Disease Support Group Official Summer Picnic Potluck Pig-Out (TAAPDSGSPPP-O) will take place Saturday, July 21, 3:30 p.m. at the ever-popular Singing Fiddle Ranch, a.k.a Pete and Pam's (Lower) Hillside Hide Away, or, more simply "Our House".

 WHAT TO BRING 

Who am I to tell you what to bring? it's a freakin' POTLUCK, for the love of mud. You bring whatever you would like to share, and we will silently judge you for your taste in, well, food. We will provide bread, cold cuts, cheese, cups, festive paper plates, copious napkins and flatware, some starter beverages and a warm welcome. You supply the amiable company and the rest of the edibles. What could possibly go wrong, aside from light head injuries like last year?

If you are really stuck on the question of what to bring, consider foods that are healthy for those of the Parkinson's Persuasion. See my blog post about a Parkinson's approved diet here

 HOW TO GET THERE 

To find our house is simplicity in itself. Go by your chosen mode of transportation to the intersection of Abbott and Elmore roads. (near Service High) Head South on Elmore road to find our place, 9601 Elmore Road, about a quarter mile on. Look for the long driveway to our single story ranch-style house with a green metal roof, on your left about halfway up a small hill, just past a largish house with a chain link fence. We have ample parking, so come on over! Questions? (907) 350-9691.

Parkie Prophet Predicts Panoply of PD-related Summer Meetings

Who can say what the future holds? Well, good news, I can! At least as far as next two meetings of the distinguished APDSG are concerned. Our upcoming meeting will be held June 16th. We will have a presentation on hallucinations and delusions in PD from Gail Howshikowa. Gail is a drug company salesperson. She works for the company that makes  NUPLAZID ® (pimavanserin). Touted as "the first and only medication approved by the U.S. Food and Drug Administration (FDA) for the treatment of hallucinations and delusions associated with Parkinson’s disease pychosis." 

 

The wise and moderate Ron Broom and I have a disagreement about people giving presentations on subjects they have a financial stake in. Ron objects to such presentations on the grounds of conflict of interest. I agree this is true, they have a conflict. But I also think if you know that the presenter has something to sell, you can size up what they have to say and judge for yourselves.  And I believe it will make for  a good meeting topic. So that is  our June meeting.

What is happening on our July 21 Meeting? It's the Summer potluck! This promises to be the PD event of the season. For one thing,  it will be held away from our regular meeting place. Instead the potluck venue will be my house. Directions to follow.

What to bring? I say bring whatever you like. It's a potluck, after all. If you need more guidance than "whatever", how about bringing something that is particularly apropos to a healthy anti-Parkinson's diet? You can find out what foods are good for people with PD here. We'll meet to eat at our usual time, 3:30. Looking forward to seeing you all. If you have any pull with whomever is in charge of the weather, put in a word for Sun in Anchorage

on July 21!

Thus spake Peter, Supreme Grand Exalted Parkie