Friday, September 15, 2017

Whoa, Nelly!bMeeting 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 app├ętit!








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!