Wednesday, August 07, 2013

The Alaska Parkinson's Rag - Gets National Accolades

Peter Dunlap-Shohl is a pretty remarkable guy.  He's got a wicked sense of humor and very little observable ego.  He also has Parkinson's Disease.  It's not the disease that makes him remarkable, it's how he's dealing with the disease - with the humor and low ego.  The most visible manifestation is his blog - which takes his cartoonist skills and makes the disease accessible for non-PD people.  He also, I'm sure, makes it a little easier to bear for those who do.

Here's what Healthline* - the website that put The Alaska Parkinson's Rag on its list of 15 best Parkinson's Disease (PD) blogs  - says about Peter's blog:
(*Note:  I can't get this to open right when I use Firefox on my Mac, but it works for me on Safari.)
Off & On: The Alaska Parkinson’s Rag
Off & On: The Alaska Parkinson's Rag offers a high-energy, artistic look at life with Parkinson’s disease. Peter Dunlap-Shohl, a quirky and creative cartoonist, this site [sic] combines the latest information on PD with comics, commentary, and poignant personal accounts.

If you’re seeking a soulful, upbeat journey of disease and discovery, look no further: Dunlap-Shohl delivers. You’ll find in this blogger the positive partner you need, whether you’re in Alaska or somewhere much, much warmer.
(I don't think the writer read my recent post that showed it was 9˚F warmer in Anchorage than San Francisco.)

I think blogs like these should get attention so that people who have or know people with PD can learn more about the disease and the people with it.  But I'm generally suspicious of "The Best 15 XXXX" lists.  The site says  "Winners selected by Tracy Rosecrans | Medically Reviewed on July 25, 2013 by George Krucik, MD, MBA"  Linked In says Tracy Rosecrans is the Director of Marketing at Healthline Networks, Inc. in the SF Bay area.  She's also done web consulting.

I give them credit for saying who did the list and that they were checked by a doctor.  Maybe she has some special expertise on what it's like to have PD.  Or maybe not, but she thought this would be a good gimmick for the Healthline blog.  Were there any criteria for choosing blogs? (I'm guessing diversity of approaches.)  Did she consult anyone with PD?  I have to mention these things so that people don't get too worked up about the awards. Especially PD bloggers who didn't get mentioned.   It sounds like one person checked the internet and thought this was a good variety of PD blogs.  I do that sometimes, but I don't make up awards to go with it.  At the very least, it's probably not a bad thing to highlight some PD blogs. 

For the record, I know Peter and have had links to his blogs for a number of years now, and I know that Peter and his blog are special.  His PD cartoons are incredible.  They give me a sense of what he's going through.  And he would deny everything I'm writing about him.

Here is a list of the others with a brief excerpt from each.  These are not necessarily (or even likely) representative of what the bloggers do, just something I found in recent posts.  Like a lot of other posts, this sort of got out-of-hand.  Live with it. 

Walking My Path With Parkinson’s 
 "I'm feeling hopeful again. The physical therapy for my arm, neck and shoulders has been very helpful; in fact I "graduated" from PT this week.   Most helpful though, I think, has been Dr. Wasserstein's direction in taking medications.  He has me on a schedule, taking 3 Amantadine capsules a day, and now I feel great!

So here's that promised list of "Do's" and "Dont's" for communicating with doctors and their minions:"

Studio Foxhoven

Eating well - finally

"There wasn't much I could eat for dinner, so I had a spoonful of almond butter, a couple of carrots from our garden, half an avocado, and some salad without dressing. I glared at my family, graciously, as they ate their spaghetti, and lettuce dripping with raspberry vinaigrette.  I was coping quite well until my husband brought out the Moose Tracks ice cream.
It wasn't fair.
Three months ago I decided to watch my diet. What I saw was a lot of carbohydrates and sugary stuff. There was a decent amount of good food, too, but the carbs and sweets side of the scale was a wee bit out of balance.  And so was I.  I hadn't been feeling too good."

LIM Yoga Blog

On the benefits of hugging without PD folks taken into consideration:
"When someone raises both arms and leans toward me for an embrace, my state of being turns to fear. I’m not entirely steady (physically, that is) and the pressure of even a light touch can throw me off balance. If I’m already in the off-balance mode, the hug can turn to a tumble when it ends as my fellow hugger releases her arms, straightens and steps away. I need more time to regain an upright stance, so when she walks, I’m still in a forward lean."

Parkinson's Journey

 There's also much lighter fare than this one.
The United States Patent & Trademark Office filed the “Notice of Publication of Application” July 11, 2013 Titled: Blood-Brain-Barrier Permeable Peptide Compositions. This is a historic first, as the permeable peptide compositions are minimally or non-toxic and are, in mouse models, able to target and destroy proteins in the Central Nervous System that cause Alzheimer’s and Parkinson’s diseases.
Contrary to what the general public may believe, most drugs do not reach the central nervous system (CNS) due to the presence of a physical barrier known as blood-brain barrier (BBB). Ninety eight percent (98%) of drugs never reach the brain and the ones that reach cannot slow down or halt Parkinson’s disease or Alzheimer’s disease. Drugs such as Levodopa that do cross the BBB merely provide symptomatic relief and stop working after sometime.

FoxFeed Blog

This is the Michael J. Fox Foundation website and blog.
"Could that medication you're taking to lower your cholesterol also prevent Parkinson's disease (PD)?
Maybe, says a new population-based study from researchers at National Taiwan University in Taipei, which found that, in particular, individuals taking simvastatin (Zocor) and atorvastatin (Lipitor) had a lowered risk of developing PD. "
The Journey

"This has been a huge week medically for me. My neurologist appointment was on Monday. I had my stitches removed Tuesday morning (yesterday) and my new doctor's appointment was Tuesday afternoon. Today, I finally got to go back to the chiropractor. My back, neck, limbs, etc, etc.... were SO far out it was not even funny. I have been putting it off since hitting my head on May 24th, because I did not think it was worth it until now to have my back put in.  All of the vertigo issues and the thought of hitting my leg or otherwise hurting it seemed more important than my aching back. I remembered to take my DizzyFix to this appointment. He was really impressed with it and even asked me if we could do the maneuver with it, so he could see it in action. He already knows the Epley Maneuver, but did not know anything about the DizzyFix. He wants one for his office, now. :)  "

National Parkinson Foundation

"This month, the National Parkinson Foundation launched its second major smartphone app, Parkinson’s Central. In 2011, the NPF developed and released the first ever Parkinson’s app for docs, the Parkinson’s Toolkit. The instant success and popularity of these smartphone-based apps has proven that Parkinson’s disease has shifted into the technological generation, where patients and families expect information to be instantly available, literally in the palm of their hand. In this month’s What’s Hot column, I will discuss these two Parkinson’s disease apps, and also address the challenges of reaching everyone suffering from this disease, on a worldwide scale. "

Parkinson's Insights
 (Parkinson's Disease Foundation)

"1.  BigBrain is like the Google Earth of the brain, allowing researchers to not only see the big picture of brain anatomy but also allowing them to zoom in with incredible resolution to practically see individual cells.
2.  Although BigBrain is like Google Earth, it currently does not have any labels.  That is, if you do not already know what you are looking at, BigBrain will not be able to help you.  (Is that New York City or Jersey City that I see?) Not all scientists are experts in neuroanatomy and so not everyone looking at BigBrain can delineate every brain structure.  Besides, annotating BigBrain will only need to happen once.  As this is done over time, researchers of all stripes will be able to ask interesting questions."

Shake, Rattle, and Roll

"We felt the need to raise some awareness about this disease, not too many people under the age of 50 are diagnosed with Parkinson’s disease we are the minority.
This is where the idea to hold a Motorcycle Rally began. Wanda was the drive, she needed something to focus on and get her mind off of their future.
So began the planning of the first annual “Shake Rattle & Roll Motorcycle Rally for Parkinson’s disease”.
A group of friends were invited to join in the planning of the rally and together we got the wheels turning."

Positively Parkinson's
 "The call display had my heart beating faster instantly.  The voice on the other end of the phone announced the beginning of an adventure the likes of which I had never known.  One could argue, and some did (and still do), that to accept the assignment was foolhardy.  Were there not enough challenges in my life; grappling with the degenerative effects of Parkinson’s disease, maintaining a thriving practice of law as part of a dynamic team of professionals, and contributing “spare time” to charitable causes (including serving as an ambassador for World Parkinson Congress 2013 in Montréal in October)?  Certainly, I had not been looking to take on any additional responsibilities.  In fact, the opposite might have been true.  But I knew this was a call I needed to answer."
On Being a Christian With Parkinson's Disease
 "Do you feel weak? Are you on your last leg of energy? Has hope dimmed and are you overwhelmed and weary of the battle against PD? Do you doubt your ability to get through another day​?

God says, “My grace is sufficient for thee; for my strength is made perfect in weakness. Most gladly therefore will I glory in my infirmities, that the power of Christ may rest upon me.” 2 Corinthians 12:9-10"

Sitting Comfortably
"It just so happens that I have had one of these nasty little tests before, so I knew what was coming. I remember the jolts of electricity from electrodes placed on the skin going down my arm, causing individual muscles to fire and jumping about like a cat on a hot tin roof in response. Then the needles which were stuck into the muscles which are stimulated by movement of the arm or by wiggling the needle in its site and readings taken. Not necessarily painful, but extremely uncomfortable."

National Young Onset Center 
"I got a lot of response to one of my recent Tweets (@PDpsych) and wanted to blog a little followup:
The best way to drive away those you love is to project your anger w/PD on them. Helping you cope & taking the heat are not the same thing.
I was commenting on a phenomenon many PD partners are very familiar with and that I wanted to blog more about as a follow up. Parkinsons can produce a lot of anger. This anger will not be found on any of the list of “non-motor” symptoms because it is not a direct outgrowth of the neurological change. It is a reaction to having a difficult, chronic disease. Being a little angry about PD is a pretty understandable human response. Making someone you love the target for that anger is not.
Parkinson’s disease has no face. When a person become angry and frustrated because of its impact, there is no one upon whom one can truly direct these feelings. A person who is not careful may find these feelings discharging anyway. The target is often only a proxy for the PD, an unwitting victim."

About Parkinson's Disease

"Much of my work at Parkinsons Recovery over the past six years has been dedicated to identifying all sorts of options that are helping people reverse their symptoms. This has been important work and it seems I am the only researcher in the world doing this type of research. Everyone else is very focused on a narrow issue (as was I when employed as a professor). If you do not focus narrowly as a  professor, you do not get promoted or tenured. I succeed with the promotions and tenure but contributed little to the world in terms of insights and revelations.
What is my revelation this week?  I believe we do not need to struggle for the answer. The journey down the road to recovery need not be a war of us against a “disease.” I believe the answer comes quite naturally and effortlessly as long as we allow it to float in and “have its way.”
What do I mean here? If we are struggling to find a solution . . ."

Note:  For the most part, the links are to the blog, not to the specific post I excerpted.  I'm doing this August 6, 2013, so if you are looking for the specific post and it's six months or two years after this post, it will be one of the recent posts from August 6, 2013.

1 comment:

  1. Well, being that not all of us have a sense of humour and little-evidenced ego even on the best of days, well done, Peter! But that's for his work, not his personality -- after all, Miss Congeniality is the REAL prize!

    Thanks for bringing this notice to light, Steve.


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