Tuesday, June 20, 2017

Dispatch From the Comics and Medicine Conference in Seattle

Hello all, just got back from the Comics and Medicine conference in Seattle. It was a good opportunity to meet people who have been instrumental in the success "My Degeneration" has met with, especially MK Cizerwiec, who has been a tireless, enthusiastic, and influential friend of the book, Kendra Boileau, who was the editor I worked with most, Susan Squier, who was the series editor, and Ian Williams, who gave early encouragement. Thanks again to all four.

The conference was a great chance to meet other figures from the small-but-growing world of Graphic Medicine, and see the work of other practitioners in the field. Among the many people I met were Brian Fies, author of "Mom's Cancer", Michael Green, co-author of "The Graphic Medicine Manifesto" and Dana Walrath, who wrote "Aliceheimers".

My favorite part of the conference was talking to the many professors who are actually teaching "My Degeneration". I lost count after six (following the principle of 1, 2, 3, 4, 5, 6, many) but it was fun to hear what students, both undergraduates and those from medical school, made of the work.

The most surprising thing to come out of the trip was to find out that Dr. Michael Green is doing a study on the effect of Graphic Medicine on doctors, caregivers and patients, and he chose "My Degeneration" as the text to be tested! I asked what criteria drove the choice, and among the factors were, I got the medicine and science right, that the story itself wasn't too frightening for patients, that I gave specific tips for coping and that they had many patients available as there is a PD center at his hospital.

If I understand correctly, the methodology was first to interview the three different groups about their attitudes toward Parkinson's Disease and those that have it. Then the participants read the book and redo the same interview as before their exposure to the book. They are now analyzing the responses and have agreed to loop me in on the results, which I will be glad to share here when they are available. (Provided, of course the result reflects well on the book. If not I will bury them so deep they will molder away in the dark, lost to the ages, until they become unrecognizable to man or beast. But I am confidant such measures will be unnecessary.) So stay tuned for further exciting developments!

And finally, a big fat thank-you to my friends, relatives and Whitman buddies who came out to support the sale and book signing, with extra laurels for Sue Skillman and Phil Fenner for putting me up, and putting up with me!


Tuesday, June 13, 2017

Meeting Alert! Pete to Miss the June Meeting

Hello friends,
I won't be at the meeting this weekend (I will be in Seattle.) However, I have been told nobody is irreplaceable, so I suggest that those that wish to meet go right ahead and do that. Who knows? Maybe it will be a better meeting than if I were there!
The meeting for month of July will be our annual picnic, traditionally held at my house. Details to follow.
Thanks,


Peter

Thursday, June 1, 2017

In Case You Didn't Hear Me the First Five Times..

Editors at Healthline have chosen Off and On as one of the top 15 Parkinson's Disease blogs of 2017. This makes the Sixth time, in a row this blog has been so honored. The editors had this to say about the blogs they chose: "Our editors carefully selected the most up-to-date, informative, and inspiring blogs that aim to uplift their readers through education and personal stories." Who am I to argue with that?

The number of good Parkinson's blogs has multiplied significantly since Healthline first recognized Off and On in 2012. So I am happy that the powers that be at Healthline still believe this effort  is worthy of the status this honor confers. Thanks to the editors, and most important thanks to you, the reader.

Wednesday, May 31, 2017

Cheer the Arts and Boo Parkinson's with one breath

Coping with Parkinson's means making the most of dwindling resources. So when an opportunity arises to do two things at once, I pounce. Slowly. I know multi-tasking isn't my strong suit (honestly, is it anyone's?) But here was a chance to make my philanthropic dollar do double duty by working for the arts and against PD.

                                                            (  S  l  o  w   p  o  u  n  c  e )

How did you do that, I hear you asking. Simple. I backed a project on Kickstarter called Kinetics. As explained by the author, "Kinetics" is a play by British actor and playwright Sue Wylie. It's about the woman with Parkinson's Disease and a bright but troubled teenager who blows off steam by Free-running, or Parkour. The aim of the play was to "raise awareness, challenge misconceptions about  Parkinson's and help people with the condition cope." The play has toured in England, and now they want to take it to the World in the form of a film. You can see a pitch from Ms. Wylie here.

So what are you waiting for? Now is your chance to be a medical Medici, a mini-mogul!  They are almost a fifth of the way to their fund-raising goal, and I think it's clear they are going to make it, but you can help ensure they do by sending them some money, then taking some of the credit for getting this worthy project launched.

BTW, I have to point out, I was among the first to associate PD and Parkour, in this cartoon from 9 years ago!


Monday, May 8, 2017

Important update! Bonus Support Group Meeting This Thursday: The Carbidopa/Levodopa Gel Pump

Don't forget, there is a BONUS meeting of the support group this Thursday at 3:30. The meeting scheduled for this Thursday, a presentation on the Duopa carbidopa/levodopa gel and pump delivery system is now to be held in the Marriott Hotel in downtown Anchorage, 820 W. 7th Ave. on the second floor in the Skagway Valdez room. To find the meeting, take the elevator to the second floor make a right, then another right and the door to the room should be in front of you. The time remains the same, 3:30 Thursday the 11th of May. Speakers include a patient who uses the gel and pump, a nurse who  works with such patients and a doctor who oversees the administration of the therapy. The program is to last an hour, and there will be time for questions. This meeting is sponsored by Abbvie, the makers of the therapy.

Wednesday, April 26, 2017

May Parkinason's Forecast for Anchorage and Environs

In other news there will be a *SPECIAL MEETING* of the support group for those interested in learning more about the new Levodopa gel pump. The program is described by the sponsor this way "The Duopa Patient Partner Program is an educational program developed to provide patients and their caregivers an opportunity to hear from a Duopa Nurse and a Duopa patient. The nurse will provide an educational overview of Duopa while the Patient Partner will share their personal story regarding their experiences with Duopa. A Patient Partner is a volunteer who has agreed to share their story with others affected by Advanced Parkinson’s disease."

This special meeting is scheduled for our usual meeting place on the fifth floor of the Pioneer Home at the usual time, 3:30, on an UNUSUAL DAY, Thursday, May 11. We will also have our regular meeting scheduled for May 20, because you just can't meet about Parkinson's Disease too often! I believe the agenda for that meeting will be a speaker on adaptive devices, but I have been wrong about that before :~{

Thursday, April 13, 2017

April Meeting agenda: Hospice and End-of-Life Concerns

Hello friends, We don't expect this Saturday's meeting to be canceled by snow (looks nervously skyward.) So you are all urged to attend the support group. We will have a presentation  from Autumn Pudge of Frontier Home, Health and Hospice, who will speak on "Hospice Services/philosophy, end-of-life, and future planning, etc. I'll bring along any useful handouts/material/information, and answer any questions-or at least suggest a direction for finding any specifics or answers I may not have." 

I hope to see you there as I do not relish the idea of facing this alone!

3:30 the 5th floor, West Lounge of the Pioneer Home,

Until then, I remain your humble servant,

Peter

Tuesday, April 11, 2017

Shakey-speare: Parkinson's Awareness Month Meets Poetry Month

Long-time friends of this blog (both of them) are all too aware that April is both Parkinson's Disease Awareness Month and Poetry Month. I like to celebrate this cosmic coincidence by mashing up two things that go together like Brussels sprouts and ice cream, namely, PD and Poetry. How? Easy! By  penning, or, more accurately, keyboarding, a Pd poem. Still with me? Good. Here goes...

"I've never seen a Parkie Cow..." No that won't do... "A parkinsonian lad, name of Tucker, was one crazy, tough little ... " no, better not go there...  "Roses are red, Parkinson's shakey, when I'm dyskinetic, my movement is snakey..." no, no!..

OK, I think I got it...











Thursday, March 16, 2017

March 18th Support Group Meeting, Preventing falls

We're going to meet the heck out of this week's meeting. You ask "What's on the agenda, Pete? Or is this going to be another of your last-minute improvisations, like the time you led a two-hour discussion of the topic 'Pachyderms and Parkinson's, a tragedy not waiting to happen'"?

Well, glad you asked. We will have a roughly 30 minute presentation on falls and their prevention. This is a topic of critical interest, as falls can lead to drastic impairment and even death from complications for people with Parkinson's. So you have a simple choice: Come to the meeting or face a journey into the great beyond.

No pressure.
See you there, the usual time and place, 3:30 Saturday (the 18th) in the upper reaches of the Anchorage Pioneer Home, the 5th floor West lounge.
Best,
Pete

Tuesday, February 28, 2017

Tired of Coping? Tips for Those Who Want to Make Their PD Worse

We smarty-pants bloggers are quick to nag with ways to make your life with Parkinson’s Disease better. We constantly scan the horizon for the latest about what you can do to enhance your quality of life, despite the fact that a progressive, disabling and incurable disease has you in its coils, slowly but surely squeezing the breath out of you. It’s not easy, but you can learn to deal with this unhappy fact in a way that is meaningful, effective and dignified.

But trying to cope well to make your life better is not the only way to respond to Parkinson’s Disease. Some people seem intent on finding ways to make their condition tougher on themselves, their family and friends. In the interest of fairness it’s time to give these people some advice, too. So, without further ado, allow me to present pro tips on making your PD even worse.

• Tip one, wallow in denial. This used to be good advice for everyone with Parkinson’s Disease. After all, in the earlier days of PD treatment (a time period covering the dim early origins of our species up until almost the present day,)  there wasn’t a damn thing we knew of that would change the course of the disease. Back then it was all about managing decline. So denial was a luxury you could afford. But now we know early intervention in the form of exercise and introduction of medicines that control symptoms lessens the grade of your downward path. Your symptoms will remain milder for longer if you practice early intervention. Denial negates the sense of urgency to intervene, so it is clearly the way to go if you want to make your PD worse.     

• Tip two, avoid exercise at all costs There are countless good reasons to avoid exercise if you wish to worsen Parkinson’s Disease. Exercise can have dramatic impact on the severity your symptoms, reducing them up to 35% in some well-documented instances. Exercise is relatively cheap, and can take whatever form you find the most enjoyable, (or the least miserable.) Symptomatic improvement, including tremor reduction and improved balance has been shown in a wide range of activities, everything from boxing through gardening.  It can’t be any clearer, if you want your case of Parkinson’s to be truly  excruciating, take the elevator, not the stairs to worse health.

Tip three: Poor adherence to pill dosage and schedule We who have Parkinson’s have a number of medications, some quite powerful, for relieving our symptoms. Precisely compounded under strict laboratory protocols, they deliver a carefully measured dose of relief to soothe our whacked-out nervous systems. These exquisitely calibrated amounts are customized to our individual stage and severity of disease. Dosages are then married to a schedule worked out between the patient’s experience of their effects and the doctor’s knowledge of the medications efficacy, interactions with other medications, and side effects. The end result is an ongoing routine like a well-oiled bicycle chain meshing in rhythm with a sprocket to drive the entire enterprise smoothly forward. Or not.

With surprisingly little effort you can wreak havoc on this delicate balance. Take too high a dosage or take the medicine too often, and you will become a wriggling mass of uncontrolled jiggling. Take too little, and you will grind to a halt, your stride will shorten, and you will increase your danger of falling. This can be done without any  conscious effort at all by merely forgetting to take a scheduled dose.

I could go on, but these should be enough to do serious damage, good luck with that.