Friday, December 29, 2017

Coming THURSDAY, January 4th, a Special Edition of the Anchorage Parkinson's Disease Support group: Connie Carpenter Phinney on Care Partnering

We will have a special edition of the Anchorage Parkinson's Disease Support group on THURSDAY, January 4th. Our speaker will be Connie Carpenter Phinney of the Davis Phinney Parkinson's Foundation. Connie has 17 years of experience as a care partner with her husband Davis Phinney. Both Phinneys were champion cyclists ​in the 1980's with Connie winning a Gold Medal at the Los Angeles Olympic Games. According to the entry on her in Wikipedia, she "is an American retired racing cyclist and speed skater who won four medals in World Cycling Championship competitions (both road and track cycling) in the late 1970s and early 1980s. She also won the gold medal in the cycling road race at the 1984 Summer Olympics in Los Angeles,[1] as well as twelve U.S. national championships. She remains the youngest American woman to compete at the Winter Olympics.[2]" Connie will share her experiences and tips for care partners in an hour-long ​presentation that will include time for questions. This special meeting will be at 4:30 on Thursday, January fourth, in our usual meeting place, the Anchorage Pioneer Home, 5th floor West lounge. I hope to see you there!

Peter

Wednesday, December 20, 2017

Closing the Year on a High Note. International Cooperation to Help People with PD

Okay, I admit the "International Cooperation" heralded in the clickbait hed above was just me and one French guy, but dagnabbit, we must start somewhere! It began when with a note from Monsieur Jean-Louis Dufloux seeking permission to use an old but redoubtable cartoon I drew (Yes, it's this one.) to illustrate a chapter of the manuscript he is finishing on Parkinson's Disease.

A bit of banter was followed by my sending a sample illustration based on his summary of a scene from his manuscript. The drawing elicited this request from my new BFF (Best French Friend) M. DuFloux:

"Hello Peter,

If possible for you, I would like to have four more drawings :

the use the repelling aspect of PD as a political weapon. My chapter illustrates the attack on Hill
ary Clinton by Donald Trump’s team during the last Presidential vote
the impact on well-being of l-Dopa at the beginning of the disease, the “honeymoon effect”
something about all the research made by teams in the world, the access to this content through internet, giving hope or disappointment
the impact on sleeping and the terrible wake up.

Tell me if you need more information.
Is it doable?
You can write dialogs, I will translate.
Thanks"
 
As it turned out, it was possible. The drawings appear below. 
 



Sunday, December 17, 2017

Monday Meeting with Speech Pathologist Anne Ver Hoef UPDATE

Hello friends, Anne Ver Hoef who is coordinating the new speech  practice meetings for people​with PD asked me to pass along that the next meeting, Monday Dec. 18 at 3:30 will be held in classroom 1, NOT the Ivy room.  Classroom one is downstairs in the bldg closest to Airport heights Dr. in the AK Regional complex.​ This should be a helpful activity that aims at preserving and conserving our ability to communicate, which is key to quality of life. Anne is the bee's knees, so this meeting is highly recommended.

Tuesday, December 12, 2017

The Parkinson's Forecast for Anchorage and Environs

Heads up fellow PwPD. We will beat back the darkness Saturday, Dec 16 by potlucking like we don't care that it's too dim to tell what exactly is on our plates. Not that we can taste anything, anyway, given that our sense of smell is shot. We'll eat, watch the lights come on across the Anchorage bowl in the early winter gloaming, and all sing "Jingle Bells" if I have anything to say about it. I'll bring something main-dishy, scads of festive plastic utensils, and charming holiday-themed paper plates and cups (although the theme of the holiday may be Halloween, I'm not exactly sure what I have on hand.) You bring whatever you think goes well with light and heat deprivation. You could consider bringing something known to be particularly good for People Packing Parkinson's, blueberries, vegetables rich in color, leafy greens and, God bless 'em, tasty wild-caught Alaska salmon!

Those in need of more distraction from the bleak mid-winter (and that would be all of us) should consider going to voice pathologist Anne Ver Hoef's gathering for those who wish to practice speaking to strengthen their voices. If you didn't get the memo, here is the gist:

The second meeting of our PD  Conversation Group is planned for Monday, December 18th at 3:30 at Regional Hospital , Conference room 1.

Some activities we discussed doing at this meeting are:

Holiday singing

Script or play reading

Chinese auction  

read and discuss news articles

The goal is to develop and improve our speaking and conversation skills in a supportive group  of folks who all share the challenge of "Living well with Parkinson's"


And  we are setting up a special meeting JANUARY 4TH, on Care partnering for PD. The Presenter will be Connie Carpenter Phinney of the Davis Phinney Foundation. Connie won a gold Medal at the Los Angeles Olympics in bicycling and competed at the Olympics as a speed-skater, too. But what qualifies her as a speaker on care partnering is 17 years of experience garnered through her marriage to fellow Olympic cycling medalist Davis Phinney, who has PD. More details to follow.

That's about it! Hope to see you at some or all of these great moments in Northern Parkinson's.

Saturday, November 11, 2017

I Said, Late-Breaking Meeting, Speech Therapy for PD

Hi folks, I just received a note from Rock-Star speech pathologist Anne Ver Hoef who has this to say "I’m organizing a PD speech group: meeting Monday, Nov 13 at 4:00 pm at Denny’s on DeBarr Rd, back room. I️ have invited several people but got behind in timeliness. Sorry for late invite. I️ don’t know if this will be a 1-time thing or if there is interest in group that practices skills and strategies and meets somewhat regularly." As many of you know Anne is a terrific therapist and a stellar person to boot. This is bound to be a fruitful use of your time.  I hope it isn't too late for you to adjust your schedules to attend this clambake.

Think LOUD,

Peter

Tuesday, October 31, 2017

A new episode of The PD Pundit (He's only trying to help) Hot on the trail of a Parkinson's cure is up over at ParkinsonsDisease.net. Today's topic, the rapid acceleration of PD care.

Tuesday, October 24, 2017

R.I.P. Bob Rinehart, Longtime APDSG member


Bob at the picnic last Summer
I'm sorry to report Bob Rinehart, the genial Texan in the old-fashioned suspenders, has died. According to Caroline, his wife, Parkinson's Disease did not play a major role in Bob's final hours as he was also coping with cancer and other ailments as well. Not that you would have known that to look or interact casually with him. He took his health problems in stride, and held to a balanced view of life. He was a solid, reassuring presence.

Bob worked for the BLM in land law. He processed native claims, allotments and the like, traveling the state widely. A great joy of his life was flying. He was a pilot who owned three small airplanes. He also loved public radio. especially Prairie Home Companion. He went on two Prairie Home Companion-sponsored cruises, on which he and his wife Caroline met Garrison Keillor the host of the show.

Bob could be quite witty. I remember hearing him answering the question "Who are the Kardashians?" with the reply " Evil Star Trek aliens from the planet Kardashia."  Members of our support group are likely to recall him fondly for the ribs he would provide to our annual Summer potluck. They and he will be missed.  Our condolences go to Caroline and the rest of his family.

The services for Bob will be held 2:00 Saturday the 28th at The First Congregationalist Church, 2610 East Northern lights, tucked in behind Wendler Junior High)

Tuesday, October 17, 2017

Oct 21st, a Halting Talk on "My Degeneration" at Providence Hospital

I will be giving a halting, slurred speech about my book-length comic "My Degeneration" this Saturday, October 21st at the Adaptive Abilities Fair put on by the local MS organization. My talk begins at 10:00 am and goes for about an hour, including the Q&A at the end. I will have a number of books available for you to pick up, thumb through, put down, then pick up again and finally buy. And yes I will be happy to deface their crisp, clean pages with my damn near illegible signature. The venue is the Providence Health Park, 3851 Piper St., Tower U Rms 2281 & 2285

Sunday, October 15, 2017

Parkinson's Can't Take Cartooning Away From Me. Not yet, Anyway

About a year ago, I ran into Matt Bors at a cartooning convention. Matt has, through sheer force of his considerable will, created one of the most provocative, smart cartooning sites on the Web,"The Nib". To my surprise, he had read my book, and said he liked it.  He proposed that I do a piece for his site, emphasizing the cartooning aspect of my struggle with Parkinon's Disease.  I did. To make a long story short, here it is.








Tuesday, October 10, 2017

Wednesday, October 4, 2017

Rejected! This Post Was Toast. Do Not Read if You Are Satire Impaired


A piece I did for a blogging client. It's inspired by the fact that three of the 20th Century's most evil men had Parkinson's Disease. Given some of the side effects of our medication, if seemed within the realm of humorous possibility there could be a connection. While the client thought this was funny, they declined to publish the piece for fear someone might actually believe that "A sudden powerful urge to brutally repress your fellow humans" was a legitimate PD medication side effect. (To their credit, they paid up a kill-fee without complaint.) I am confident confusion in this case will not be a problem for Off & On readers, and because I like the way the drawings of Franco  and Mao came out, here it is.







Sunday, September 24, 2017

Isolation and Parkinson's Disease, The hiding and the hidden

This is a reprint of  a blog post I wrote for the Northwest Parkinson's Disease Foundation. 

One of the biggest drawbacks of Parkinson’s Disease is the terrible potential it has to isolate an individual. Getting out of the house, engaging with the World is one of the things that make us human. Shut yourself away from the ebb and flow of human affairs, and your time here on Earth will likely be shorter, and more miserable than it otherwise would have been. Though it will seem longer, by far.

Studies have found that social interaction lessens depression, a common problem associated with Parkinson’s, and that interactions with family and friends increase mental stimulation. These, are well-recognized factors in their importance in coping with PD.

Unfortunately, in yet another sample of the thorough and twisted logic of Parkinson’s,  the disease and its many symptoms work against our healthy impulses to go out in public.

It’s hard to get out for physical reasons alone. We have difficulty moving, which is just the first barrier we must overcome. Then we have our inability to speak loudly and clearly. This can isolate a person effectively even if they do go out. It is demoralizing to attempt to contribute to a conversation, only to be ignored because you can’t muster the volume to get the attention of others. Further, we may be  embarrassed by a tremor, or by drooling. And the mental image of parading your shuffling gait in front of an audience, or gyrating wildly as you careen around a restaurant like a drunk, attempting to maintain your balance, is a serious deterrent to going out.

And then there is all the extra paraphernalia to wrangle, like canes or walkers, and God forbid you forget the pills that now must accompany you wherever you go.

But the biggest thing we have to carry out there is our vulnerability. The fact that we are sick and cannot hide it makes us uncomfortable, partly because it makes the rest of humanity uncomfortable. How? The fact is that if we are vulnerable, so is anyone, and everyone. Why else did Rush Limbaugh famously mock Michael J. Fox? Because Limbaugh is afraid. To belittle Fox is to minimize him as a threat, to put him in a different category, to deny his vulnerability is a shared vulnerability.

The uncomfortable truth is, we all do share that vulnerability. To defer to it by hiding ourselves away not only cuts us off from the rest of humanity, it cuts the rest of humanity off from us, and from the brutal reality that we represent. We are an important reminder to the rest of the race that all are subject to the whims of fortune. Until we can cure this disease, it can and will continue to mysteriously cut individuals out for suffering that carries no explanation or justification.

Humanity is in a position to do something about that. A cure can be found. It is just a matter of time and priorities. As long as the stricken lay low, we make it easier for the rest of the World to ignore our plight. By enabling others to ignore the disease, we come dangerously close to collaborating with it. Because as long as it is ignored, it will continue to claim more sufferers, slowly wring the joy from their lives, and extinguish them.

Your disease has been making you uncomfortable (to say the least!) long enough. Time to let it make someone else uncomfortable. Don’t go out for your benefit, much as it will benefit you. Do it for the rest of humanity. Do it for Rush.

Friday, September 15, 2017

Whoa, Nelly! Meeting this Saturday, Sept 16

There is a meeting orf (just for fun, I'm gpoing tp leave in all my typo's in this note.) the Anchorage Parkinson's Disease Support Group tomorrow, the 16th of Sept.For you stivcklers, the offictal start time is 3:30. Our topic will be an important new study just released on PD and diet. (Hnt: eat your fruits and vegetables!) got it" ? Good! See you tomorrow,

Peter

Tuesday, September 12, 2017

Parkinson's Palate, What Diet Should a PD Patient Pursue?

The Holy Grail of Parkinson's research is reversing and healing the damage the disease does. Short of that, and more immediately within our reach, is slowing it down. Ironically, the fact Parkinson's is slow-moving to begin with makes it difficult to tell whether your attempts to retard it are effective. So a just-released study, "Role of Diet and Nutritional Supplements in Parkinson’s Disease Progression," that appeared in the journal Oxidative Medicine and Cellular Longevity, was met with excitement by the PD community. While there isn't any radical departure in direction, the study puts substantial additional weight behind the old recommendation: follow the Mediterranean Diet.

The study, led by Laurie K. Mischley of Bastyr University features a table that lists foods effective in slowing the disease, and foods that seem to speed it up. The authors point out the Mediterranean diet, known for its association with a lower risk of developing Parkinson's can now be looked on as a way not only to reduce the risk but too slow the disease progression, too.

What is the Mediterranean diet? Here is a simplified version adapted from Healthline that fits well with the advice from the study:

  • Eat: Vegetables, fruits, nuts, seeds, legumes, potatoes, whole grains, herbs, turmeric, ginger, fish, seafood and extra virgin olive oil.
  • Eat in moderation: Poultry, eggs,
  • Eat only rarely: Red meat
  • Don't eat: Sugar-sweetened beverages, added sugars, processed meat, refined grains, refined oils and other highly processed foods.

Also in the don't eat category: dairy. The study found "Ice cream, cheese, and yogurt intakes were associated with higher rates of PD progression (Table 2). Dairy has been repeatedly associated with PD incidence." You say "No yogurt? I thought that was as good way to keep the cultures in my gut healthy!" Granted, but you can replace that with other fermented foods, like pickles, kim chee, saurkraut, stink heads, kombucha or miso. There is a mammoth list of fermented foods here.

The authors had some unkind words about canned fruits and vegetables "Consumption of canned fruits and vegetables was a strong predictor of PD progression. Initially thought to be associated with socioeconomic status, the association remained after adjusting for income. Bisphenol A (BPA) is used extensively worldwide in the inner coating of food cans, and there is evidence that BPA contaminates foods stored in the cans. BPA is a well-established endocrine conductor associated with obesity, and more recent evidence suggests that it is an energy balance disruptor." Frozen fruits and vegetables were also found to be bad for people with PD, although the report offers no information on why this might be.

They also point to fried foods, soda, and beef as hastening PD progression. "Beef and pork, the most frequently consumed mammals in the Western diet, have several things in common, including a high-fat content and slow intestinal transit time. That intake of pork which was not statistically significantly associated with worse prognosis suggests that future research should be directed toward variables unique to beef, such as the higher iron content.

The authors had nothing to say on the health effects specific to PD of eating insects, the food of the future, so we'll just have to wait for that to be studied, But there is plenty of good advice  for what to eat in the present if you want to have a future. Bon appétit!

Tuesday, September 5, 2017

"Distractable Me" From the NWPF Community Blog

Here is a post I did for the Northwest Parkinson's Disease Foundation's  Community Blog, reposted with their permission. This was a piece I was a bit nervous about posting because the "meta" nature of the message seemed like it might elude some. But it seemed to go over just fine. Whew! For your reading pleasure, Off and On presents "Distractible Me"

Remember the good old days when Parkinson’s Disease was thought to be a problem centered in the substantia nigra, a tiny structure in the deep brain? Good times! We thought if we could just discipline this wayward little piece of our mind, we could solve the problem of Parkinson’s. Now we are sadder but wiser, aware of changes elsewhere in the brain, and beyond, that tell us the problem is more widespread than we assumed.

For example, the pre-frontal cortex, home of our “executive function” (ability to plan, organize, initiate, and regulate goal directed behavior) is degraded by Park… oh, excuse me, that’s my pill timer… I use the timer on my phone, it’s convenient and… hey! New message from Paul… haven’t heard from him in a dog’s age. Why did they have to make messenger a separate app? It’s… oh look! 17 new notifications! And this is a totally different Paul than the one I was thinking of. Who ARE these people anyway? As long as I’ve got the phone out, I should check my email, and WHOA!… There’s a woodpecker in the back yard! I should take a picture, they have such handsome plumage. That bold red, black and white combination is so classic… Damn! They always fly off before I can get the camera app booted up, and… LOOK at the TIME! 12:30! Lunch hour! But hang on a second, why is my pill case out? Oh, right. Timer went off, I was supposed to take a pill. Did I take it, or not? Better do a pill count and see if I can figure it out… OK… so there are five pills left and I normally have four by this time, so I forgot one. I guess we can assume it was the last one. Well, let’s see… I’m about a half hour late… take it now, and delay lunch to avoid any protein interaction? Or eat now and just tough out any freezing until the next scheduled dose? Better eat now. (wanders into kitchen, makes lunch, freezes up, festinates back to computer) Where was I? Oh yeah, not sure “teleological” is exactly the right word for what I want to say here, better look it up. Hmm. Having looked it up now I’m even less sure what it means. Well, as George Orwell put it, never use a fancy obscure word where a plain one will do. Although he used “George Orwell” instead of his real name, “Eric Blair” when “Eric Blair” would have done fine. But I guess Walt Whitman was right when he pointed out “A foolish consistency is the hobgoblin of a small mind.” What is a hobgoblin anyway? Is it any different from a regular goblin? If so, how? If not, why have a separate word for it? Better look that up as well. No! Must concentrate on the task at hand!… Which is…. What?… Oh yes,  writing about the debilitating nature of distractibility when one is dealing with PD. Although, given their distractible natures, I have to wonder if any of my fellow parkies will  actually read this far. Hmm, do I want to use the term “parkie”? Some people with Parkinson’s find it offensive, although why they should be offended by that when there is so much out there that is more offensive, you just wonder where they find the hours in a day to devote to... OMG!.. squirrel! SQUIRREL!!!!!!!!!… (Sound of breaking glass, thud of body hitting ground, running feet, angry scolding from indignant squirrel.)

Quiet, too quiet...

I was rarely labeled "Too quiet" before I was diagnosed with Parkinson's Disease. Since my diagnosis, it's been much easier for others to hear themselves think, to slip in a word edgewise, too make themselves heard over the dull roar. But a blogger is supposed to spout regularly, and often.

As a blogger, I've let you down. I wouldn't blame you if you've begun seeing other bloggers behind my back. Rendezvousing in No Tell Motels for a fix of obscure PD info, or a saucy-yet-thoughtful  opinion. Tawdry, yes. But still, understandable.

What is behind my increasingly sporadic posts to this page? Have I been deteriorating to the point where I can barely type? Have I run out of things to say? Has PD finally gotten the upper hand?

Quite the opposite. I've become such a notorious loudmouth that I am now blogging at the invitation of two other sites. Health Union, on their Parkinson's pages, and the Northwest Parkinson's Disease Foundation, on their Community Blog. But that doesn't mean I should neglect Off and On. So my apologies. I'll do better.

Tuesday, July 18, 2017

Parkinson's Peeps Picnic Pics (Say That Three Times Fast)

Thanks to all who took the time to stop by the Singing Fiddle Ranch for our annual APDSG  Summer Potluck. People brought food and smiles, and below are the photos to prove it. We had perfect weather, no ants, and only two falling incidents, one of which ended up in stitches at the ER.

For those who are concerned, Howard is doing fine. Louise says "I wanted to thank you for your help and concern when Howard had that nasty fall! So much blood! Well, we ended up at Regional Hospital and of course they were busy as could be expected on a sunny Saturday afternoon. After cleaning, numbing, more cleaning, Howard ended up with 10 stitches and a large bandage around his head. We were finally home at 9:30 PM. Howard feels fine and we are so grateful! It could have been so much worse! Thanks again to all the people who helped and others who wanted to help. It is comforting to know we are part of this caring Parkinson's community."

Fortunately we had people with medical training there who made sure that Howard was taken care of, thank you, Jerry and Mike.

Our best wishes and hopes for a speedy recovery go back to Howard and Louise, who handled the situation with calm, level heads.

Thanks again to those that came out.  See you next month back at our usual gathering place in the Pioneer home.

Here are my charmingly amateurish photos...

Spotlighting our festive "Christmas in July" holiday napkins! Ho Ho Ho.
Lory, Sherry and Jan soak in the rare Summer sunshine


Ron and Mike enjoying the afternoon

More edibles than you can shake a stick at, many featuring anti-Parkinson's food, like wild salmon, blueberries and other color-rich fruits and vegetables

Saturday, July 8, 2017

July 15 Meeting: The Parkinson's Summer Potluck at the Singing Fiddle Ranch

Hello Friends, The next meeting of the Anchorage Parkinson's Disease Support Group will be our annual Summer potluck. As per ancient APDSG tradition, the shindig will take place at the usual time, 3:30 in the afternoon. The place will, however, be at the unusual home of Peter and Pamela Dunlap-Shohl, 9601 Elmore Road, aka the Singing Fiddle Ranch!
To get there, follow these simple directions. Head for the intersection of  Elmore Road and Abbott road, just West of Service High School. At the intersection you will come to a stop light. At the light go South on Elmore about a quarter mile. Our long driveway will appear on your left, about halfway up a small but steep hill, immediately after you pass a large house also on your left, with a green metal roof with a yard enclosed by a chain-link fence. Our house is small, also has a green metal roof, and cedar siding. We have plenty of parking., so drive on in.
This is traditionally a pot-luck, so bring whatever you like to share, I will provide a main dish, paper plates, plastic utensils and cups, so if I were you, I'd bring salad, chips, relishes, drinks or dessert. But no reasonable food will be refused!

Extra points if you bring a food that is part of an anti-PD diet. This would include richly colored veggies and fruits, (especially blue berries) wild-caught salmon, and foods seasoned with curry powder (Turmeric.) Coffee and green tea are also believed to have anti-PD properties.

I think that covers it, but if you have questions, please call me at 350-9691.  See you next Saturday,
 Peter

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.

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.