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.

Thursday, January 26, 2017

Getting My JAMAs On, Journal of the American Medical Association has Kind Words for Comic About PD

It seems that there has been a gap in my role of relentless self-promoter. At the tail end of December, 20016, The Journal of the American Medical Association praised the heck out of my now-a-year-old graphic-novel-style memoir of coping with Parkinson's Disease, "My Degeneration". And somehow it never got mentioned in this authoritative blog. We here at Off&On Media Enterprises are just sick about this oversight and assure you, loyal reader, that steps have been taken, measures put in place, and the guilty tracked down and summarily dealt with. Our apologies to you, your ancestors, and of course my ancestors.

Is there anything I can do to make it up to you? Probably not. But to assure you of my future  good intentions, allow me to post a link to this article in Parkinson's Life Magazine  about the JAMA article. And if you want to see the JAMA story, why, it's right here. Again, my apologies. It won't happen again.

Friday, January 6, 2017

"Parkie", an Improper Noun?

Parkie. It's a word that slides easily off the tongue , then catches in the craw. Some of us use it freely. Others loathe it. Why?

A fellow PD patient recently made the case against "parkie" in a post on Facebook. Her argument was that the term trivializes PD. Here is how it was put in the post: "I can not think of one other illness, disease or condition that is referred to by a cute nickname. Parkinson's is not a club I wanted to join. I was abducted into it."

Can we think of another disease that gets similar treatment?   "Leukies" for leukemia victims? "Leppies" for those with leprosy? "Lupies" for those with Lupus? "Crohnies" for people with Crohn's?

And yet, "parkies" is used regularly in the community of those with the disease.  I have always felt a bit wary of the term, though I used it in the company of allies from the PD world. Looking at the list above, I wonder what came over me. My cronies must have thought I was loopy. I can't imagine calling someone with leprosy a "Leppie", there is an air of condescension about it, an unearned intimacy.

But there is a bit of confusion here. The objection above is to referring to an "illness, disease or condition... by a cute nickname." "Parkie" does not refer to the disease, it refers to a person with the disease. And here, context matters.  Used between two people with Parkinson's disease "parkie" is a diminutive that functions a little like the word "namasaste", only instead of the spark within me recognizing the spark within you, it's the pain in me that recognizes the pain within you, my fellow person with Parkinson's. What could be more ruefully human than that?

This also explains why it falls so wrong on the ear when used by someone who doesn't have the disease, or who isn't an active caregiver. Such a person hasn't earned the right to the intimacy of the diminutive, so for them to use it does indeed trivialize PD.

But, parkie-to-parkie, I am glad to have  people around to share the misery. PD forces us to give up so much."Parkie" is the rare case where we get to do something nobody else can.

Thursday, October 20, 2016

Optimism and entanglement, My Changing view of Parkinson's Disease



Parkinson's Disease is considered rare. But most of us carry a vague mental picture of it, or more precisely, its effects. This picture centers on the brain and usually includes uncontrollable shaking, drooling, gait impairment and weakness. What's more these effects are progressive, disabling and incurable. Aside from this, the other thing people know about Parkinson's is it's a disease of the elderly.

That was roughly the mental picture I had when I was handed my diagnosis in 2002. Bang went the illusion that youth was a bulwark against PD. I was 43, much "too young:" to have Parkinson's. This rude shock was just one of many changes to the picture I have of PD 14 years after diagnosis.

First, yes, Parkinson's is a brain disease, but it is more than a malfunction in the tiny part of your brain where the dopamine that tells muscles how to move is made. We now know it also affects the motor cortex and the prefrontal cortex, where it has effects beyond movement problems. This never-tiring disease also involves the body beyond the brain, afflicting those who have it with constipation, loss of sense of smell, and sleep disturbance a decade before the appearance of motor problems most commonly associated with the disorder.

Which brings up a whole class of symptoms that were, for the most part, downplayed. These are non-motor symptoms. There is a raft of them, but perhaps the most significant are depression and cognitive decline. Can I get an oy vey?

On top of these underappreciated non-motor symptoms is a boatload of motor complications that add to the many miseries of Parkinson's. Miseries of which I was blissfully unaware. Suffice it to say that PD not only fucks you up, it fucks you up in great detail. Like a jagged coastline, the closer you look at it, the more of it there seems to be. Oy. Vey.

In general, my perception has moved from terribly oversimplified to a realization that PD is fiendishly complex. Yet I am now far more optimistic than I was 14 years ago about the prospects for PD patients to live fulfilling, meaningful and dignified lives.

What is my basis for this outlook? Do I have some inside information on a cure around the corner? I do not. Nobody knows when the longed-for cure will finally make its appearance. I doubt it will be in the next few years, As I wrote above, PD is terribly complex. The cure hasn't been found yet because it's hard to cure. The likelihood that a simple fix, let alone a complex one, will be found in time for me, now two years shy of 60 years old, seems small.

But consider: I've lived the last 14 years, not without loss, but with fundamental quality of life largely intact. There are unquestionably things I have given up. I rarely drive anymore. I have found myself looking over at the last minute and avoiding disaster too many times to be confident behind the wheel. I would dearly love to be unchained from the pill routine that I must maintain to approximate normal. And don't ask about my ability to play guitar and sing.

So, despair, right? No. After 14 years, a bit of brain surgery, a devotion to exercise, and a simplification of life following the loss of my wonderful but stressful job, my experience leads me to believe with a bit of luck, some discipline and maybe a bit more luck, a person using the information and interventions we now have available can live a life that is full and rewarding.  I know this is possible, because I live it. Maybe not full in the way you expected. But, to quote John Lennon, "Life is what happens while you are making other plans."

Tuesday, October 18, 2016

ENDPAIN Interview: The Weirdness of Parkinson's Disease

The formidable Julia O'Malley interviewed me for the Los Angeles based media site Endpain. The interview came out almost too well. Elegant design, superb photos, and penetrating questions from Julia  make my replies seem almost coherent, and thoughtful.  You may judge for yourself here.