Sunday, August 21, 2016

Support Group Hijacking, Just Whom Is Your Group Supporting?


Can your well-meaning support group get hijacked by other interests? This question came up recently after I announced to our group that we would be having a talk on a new form of the front-line medication for Parkinson's, Levodopa/carbidopa. The talk was to be given by a representative of the maker of the medication. A member of the group, who had worked in the pharmaceutical industry, objected. "Isn't the direct marketing of medications to patients bad ethical practice?"

Yikes!

There was an unspoken question or two beneath the spoken inquiry. "Pete, are you shilling for Big Pharma now? Or are you merely their patsy?" To be fair, I'm not sure that these unspoken questions were dangling in the mind of the group member who spoke, but they rang loud and clear to me as implications of the first  question. Had I unintentionally allowed a company to use our time for their own purposes?  I holed up at home and thought about it. Here are my conclusions.

First, on direct marketing (DM). Can DM cause problems even if no deceptive  practices are involved? The answer is yes, it can create pressure on doctors and pharmacists to dispense medication that might not be medically necessary. The result: wasteful spending and the potential exposure of the patient to unpleasant side effects of the medication.

But this potential harm must be balanced by the patient's need for information, a need arising from our expanded role in our own treatment. We are now expected to be more involved in and assertive about our care. This is especially true of  Parkinson's patients without access to a movement disorders specialist. It's hard for the general neurologist to be current in every aspect of a disease and its treatment. A case in point: local neurologists unaware of the benefits, or even the existence of LSVT Big therapy, a powerful tool for symptom management.

It falls to the patient to be an advocate for new therapies or procedures. Understanding these new options, or just discovering them, can be the outcome of talks sponsored by the people who dispense them. Knowledge empowers the patient, which most of us agree is good.

This leads us to the question of the role of the support group. A primary benefit of the group is the exchange of information about dealing with PD. With that in mind, if I am going to make a mistake in regulating the flow of information, I am going to make it in favor of too much information, not too little. If the result is more pressure on doctors to prescribe a certain therapy, then doctors will have to resist that pressure where the outcome would result in harm to the patient. Patients have a duty as well, to understand as best they can the particulars of their medical situation, and the arguments the doctor makes concerning treatment.

Most patients grasp that a representative of a company likely has the interests of the company close at heart, and can factor that into their perception of the presentation. And there will always be those pitching snake oil that have to be weeded out. But "too much information" is rarely the problem in dealing with Parkinson's Disease.

I would be interested in hearing from other support groups if they have had discussions of this issue, and what  conclusions they came to. Comments welcome.

Wednesday, August 3, 2016

Anchorage Area Parkinson's Activities For August

Time for a gaze into the mystical, magical, all-seeing, all-knowing orb, the Parkinson's eight ball, for a glimpse of the immediate future. The first thing I see is... there will be no teleconference again this month. The buzz on that is the teleconference will resume in September. So your next Monday is free time!

 We will have a special, bonus meeting on THURSDAY, August 18 at 5:30 in the afternoon, in our usual haunt, the Pioneer Home fifth floor West lounge. This meeting will be an informational presentation by Kendall Cook of Abbvie on their pump-administered Levodopa gel infusion. If you're asking yourself "What the heck is pump-administered Levodopa gel infusion?" you are the perfect candidate to attend this informational  presentation, and get knowed up on this therapy, which just recently was approved by the FDA. The session, with question and answer period, should last about an hour.

You'll want to rest up Friday so as to be ready for our regular meeting the following Saturday, August 20, when we will have a pair of therapists in to talk about the Lee Silverman Big and Loud physical therapy program. Based on the concepts that guide Lee Silverman Voice Therapy, Silverman Big and Loud has been shown to substantially improve symptoms in patients with PD.
That's it for August, be well, and well-medicated,
Peter

Wednesday, July 27, 2016

Cartoonist Richard Thompson Dies of Parkinson's Disease

One of Thompson's best-known drawings
Proof came today that rare talent, personal graciousness, hard work, high standards, and an extraordinary sense of humor are no shield against Parkinson's Disease. Cartoonist Richard Thompson died this morning. Richard struck me as a genuinely humble man, both aware of his great gifts and unimpressed by them. He cut his own brilliant path. It was marked with restless artistry that was held together by his enormous talent, great charm and intelligence, and driven by his uncompromising high standards. 

I used to keep one of his drawings, a caricature of the late North Carolina Senator Jesse Helms, up above my drawing board at work. Not as an incentive to equal or surpass it. That was clearly out of the question. I put it there to inspire me to do the best work I could do, to remind myself that creativity matters, and mainly because it was a beautiful and devastating drawing that was a joy to look at. 

Richard varied the look of his work with a love of experimentation few could match.
 When Richard was diagnosed with PD, his friend Chris Sparks formed Team Cul de Sac, the cartoonist's project against Parkinson's Disease. Chris had the idea of publishing a book of tribute drawings by other cartoonists in honor of Richard's daily comic strip, Cul de Sac. Richard, with typical generosity, invited the other artists to play with his characters, transforming them with their different styles, and imagining their own interpretations. The project made news when the reclusive Bill Watterson, one of Thompson's many cartoonist admirers, contributed a small oil of Petey, one of the main characters in the comic. It was the first artwork the public had seen from the Calvin and Hobbes creator since his retirement of his beloved strip many years before.

Watterson was not alone, he was joined by the likes of Pat Oliphant, Lynn Johnston, Jim Davis, and others, both well-known and obscure. Including the drawing below, I'm proud to say. The book, and an auction of the artwork brought in thousands of dollars for the Michael J. Fox Foundation. Since its founding, Team Cul de Sac has raised over $200,000 dollars toward ending Parkinson's Disease.



Richard and I met once, and spent an afternoon talking about the things we had in common, a shared love of British master cartoonist Ronald Searle, a shared burden of Parkinson's Disease. I left his house thinking our paths would cross again, that he would be helped by brain surgery and have years of drawing ahead of him yet. Parkinson's had other plans. Richard, once a most prolific artist, seemed cut off from his muse by Parkinson's disease. The hoped-for benefits of the surgery didn't take. Despite admirable support from family and friends, his decline became steep and irreversible. He died at 58 years old. 

Parkinson's Disease was cruel to him, and cruel to those that loved him or admired his work. I was wrong about his chances with PD, but I am sure of this: His reckless line will remain a thing of beauty with few peers.

Wednesday, July 13, 2016

Parkison's Activities for the Anchorage Area in July, Latest Shocking Report

It's high Summer, and no relief from 70 degree weather in sight! This means you can ride your bike, walk or run to the next meeting of the Anchorage Parkinson's Disease Support Group this Saturday, July16 at 3:30. Why would you want to do that? Because I'm announcing the APDSG Move it Or Else (MORE) challenge. As it becomes ever more obvious that exercise is critical to dealing as effectively as possible with PD, I'm looking for ways to create incentives to keep us moving. Incentives, that is, beyond the already established incentives, as enumerated here by the National Parkinson's Foundation: 
  1. Symptom management.  Research has shown that exercise can improve gait, balance, tremor, flexibility, grip strength and motor coordination.  Exercise such as treadmill training and biking have all been shown to benefit, as has tai chi and yoga (although more studies are needed).
  2. Possibly slowing disease progression.  There is a strong consensus among physicians and physical therapists that improved mobility decreases the risk of falls and some other complications of Parkinson’s. They agree that practicing movement — physical therapy, occupational therapy, and participating in an exercise program—improves mobility. By avoiding complications, you can avoid some of the things that can make PD worse. Beyond this, we know that people who exercise vigorously, for example by doing things like running or riding a bicycle, have fewer changes in their brains caused by aging.  Studies in animals suggest that Parkinson’s disease is also improved by exercise. Many neurologists in the NPF Center of Excellence network recommend intense exercise to their patients and also to people who are worried about getting PD because of a family connection. One neurologist told us that he tells people with a relative who has PD to exercise 300 minutes a week, with at least half of it devoted to intense running or bike riding. One Parkinson's Outcomes Project study has proven that people with PD who vigorously exercise for 2.5 hours per week show a slowed decline in quality of life, and the sooner they begin vigorous workouts after diagnosis, the better,

Wow, Pete! That's amazing!  Where can I learn more? Right here,

Or, how about here
​?...​
 
​This, too 

I could go on, but you get my drift. So what is MORE? MORE is the acronym for Move it Or Else. The idea is simple, because I don't do complex with much elan these days. Here it is: based on the well-founded premise​ that any type of exercise you do is better for coping with your PD than no exercise, we will pass out forms on which you can list the amount of time spent exercising in minutes, and the type of exercise you did. Any form of exercise will count the same, Biking will be worth the same as walking. Pole vaulting will count the same as bowling, the idea is to spend time moving. Whomever among our support group participants completes, compiles and notes on their form the most minutes of exercise between the July meeting and the annual holiday potluck will be the winner of the grand Prize, a personally autographed copy of "My Degeneration" custom-signed to commemorate  your awesome victory. This is, of course, STRICTLY VOLUNTARY. But what have you got to lose, besides your balance? Our motto: We can do MORE!
Also, an early warning. We will have a special meeting August 18 at 5:30 pm at our usual spot in the pioneer Home. The subject will be the Duopa levodopa/carbidopa gel pump. The speaker will be Kendall Cook, a representative of Abbvie, the maker of this continuous delivery method of administering levodopa/carbidopa.
There will be no Telehealth conference next month. I assume they are catching their breath. Telehealth broadcasts will resume in September.

That's a wrap,
Pete

Monday, June 6, 2016

Once Again, Off and On Picked as a Best Parkinson's Blog for 2016 (Along with 14 others)

The invisible hand of Healthline, a San Francisco-based Web site has ransacked the darkest corners of the internet on a desperate quest to find the best blogs on Parkinson's. When every sack had been ran, it turned out that, once again Off and On was chosen for these particular laurels. To the winners go cash prizes of...  heh, just kidding. The winners get this nifty graphic "badge" to append to their blog in a suitable spot, and a temporary vacation from that vexing question "Why am I doing this, anyway?"

The Website posted about the criteria for selection, and had this to say about the winners

 "We’ve carefully selected these blogs because they are actively working to educate, inspire, and empower their readers with frequent updates and high quality information. If you would like to tell us about a blog, nominate them by emailing us at bestblogs@healthline.com!"

 Here is what they had to say about "Off and On"


"...learn about symptoms, download charts that can help you manage your medications, and much more. Because the blog’s been active since 2008, and because the writing is so entertaining, you could literally spend hours here."

Thanks to Healthline, and to the readers of this blog, without whom the question "Why am I doing this anyway?" would be way harder to answer.

Thursday, June 2, 2016

Parkinson's Activities for Anchorage-Area Persons of the Parkinson's Persuasion

So what will Anchorage People-with-Parkinson's-about-town be doing this month? (aside from tremoring, festinating, and taking pills, I mean.) Myself, I  hope to be swanning around with the in crowd  attending the Parkinson's Telehealth broadcast. The subject is "Thermography, non-invasive and comfortable imaging for detection of breast Cancer for PD, Caregivers, and more" The event is June 13th, 2016, at 1:00pm. To find the Anchorage area broadcast of this live and interactive hour-long session,  head to the Piper Street side of the Providence Hospital mega-plex, go to the second floor, walk down the lonnnnnnnng hall that stretches South from the cafe and look for room 2401 pretty much at the end of the hall on your right. Then rest up for our next fabulous event, the Summer Picnic Potluck at my house, 9601 Elmore Road (Directions: Beware of construction on Abbott Road. It's best to take Elmore South to the lighted intersection with Abbott. Continue South through the intersection and look for  9601 Elmore about a quarter mile later, roughly halfway up a small hill, on your left. Our house is directly after a largeish house with a chain link fence around the front yard. Come up our semi-long driveway and you're there!) The picnic will take the place of our regular meeting June 18th at 3:30. We'll have cold cuts, paper plates and utensils, you bring whatever you think will taste good on a sunny afternoon in early Summer.
I hope you all are enjoying this fine weather, and that none of you spontaneously combust in the heat!
Sweatily,
Peter

Thursday, May 5, 2016

Parkinson's Report for Anchorage and Environs, May 2016

Hello friends, Wondering what we're going to do this month to remind ourselves that we have a rare and debilitating disease? That's the spirit! You can show your contempt for this sorry, so-called pathetic excuse for a malady by attending the Telehealth seminar on Monday, May 9th, at 1:00. The topic this time is the World Parkinson's Conference, to be held in Portland, Oregon this September.  They will address registration, accommodations, sessions and travel. To find the Anchorage telehealth interactive broadcast, proceed with all deliberate speed to Providence Hospital oncology wing on Piper St. ( Go to the second floor, walk down the lonnnnnnnng hall that stretches South from the cafe and look for room 2401 pretty much at the end of the hall on your right.
The monthly support group meeting will be held May 21st, at 3:30 in the luxurious fifth floor lounge of the Anchorage Pioneer Home. It will probably be an "open mic" session for you to air your PD questions and concerns. If nobody has any questions or concerns about the disease we will take up the topic of "If we're not worried about this. then why do we have a support group anyway?"
​Thank you for your attention, now  please return to what you were doing before I so rudely interrupted,
With ceremony, ruffles and flourishes, this is your President-Pro-Tem-For-Life, Generalissimo Pedro Del Dunlap-Shohl, signing off.

Thursday, April 28, 2016

Another Parkinson's Disease Quiz! (Originally Appeared as a Post For the Northwest Parkinson's Foundation.)

I just ran across this forerunner of the PD Trivia quiz. I wrote it some time ago for the NWPF, and decided it is worth republishing here. Beware: it has a bit of attitude. But at least it's short.

QUIZ: How well do you know your Parkinson’s Disease?

To complete the quiz, you’ll need a pen, a pencil, or a stick to mark your answers; an encyclopedic knowledge of Parkinson’s disease, or access to a reliable search engine; a dogged perseverance; a sense of humor. Choose as many of the answers as seem true to you.

1.) Among the earliest signs of Parkinson’s Disease are:

A.) A shaking of an extremity that lessens when moving
B.) The sudden appearance of strange new vocabulary, with foreign-sounding words like “Dystonia” and “Festination”
C.) Constipation

(Answer:  C. Constipation. People can have this as a PD symptom a decade before other signs emerge.)

By the time a diagnosis of Parkinson’s Disease is made, a typical Parkinson’s patient:

A.) Has been misdiagnosed with so many other diseases that denial seems not only reasonable, but downright sensible.
B.) Has lost the use of as much as 80% of the cells that make dopamine in the substantia nigra
C.) Is ready to slug their doctor

(Answer: B. Cell loss. This is a tough one, but as only some patients suffer frequent misdiagnoses (as many as 30% of those who don’t see a movement disorders neurologist) and only a few feel like slugging their doctor, I’m sticking with B.

3.) Parkinson’s researchers divide symptoms of the disease into the following categories:

A.) motor and non-motor
B.) serious and frivolous
C.) sinister and hilarious

(Answer: A. Motor and non-motor. Motor symptoms are those like tremor or stiffness that affect movement. Non-motor symptoms involve other aspects such as emotion, with the onset of depression, or cognition, with the loss of ability to cope with complexity. And if you answered B or C, shame on you, cynic.)

4.) The number of people diagnosed with Parkinson’s in the United States is:

A.) Around a million
B.) Way, way too many
C.) Not getting any smaller, that’s for sure.

(Answer A, B, or C. Any of these is a defensible answer. The problem is that with the slipperiness of a PD diagnosis, and the consequent number of misdiagnoses, we really don’t know the exact number. A million seems to be the most common number tossed around in articles on PD. Answer B. way too many, goes without saying. C, not getting any smaller, is unfortunate but true as the baby boom generation is now entering its prime years for diagnosis.

5.) The most effective underutilized measure to cope with Parkinson’s Disease is:

A.) Exercise
B.) Exercise
C.) Exercise

(Answer: You can’t go wrong with exercise. Nutshell version: regular exercise can help with balance, mood, cognition,  and can very likely moderate the progression of the disease. Studies have found that the earlier regular exercise is implemented, the more gradual the patient will decline, compared with those that cannot or will not exercise. Also it is inexpensive, has no side-effects when properly done, and can actually be fun.

BONUS QUESTION: Which of these dictators suffered from Parkinson’s Disease?

A.) Adolph Hitler
B.) Ferdinand Franco
C.) Mao Tse-Tung

(Answer: All three! Maybe the urge to conquer the world should be considered a non-motor symptom of PD.)

Interpreting your score: 4-5 correct: PD Maven, put yourself in charge of your support group. 2-3 correct: PD Journeyman, put yourself in charge of snacks for your support group.  0-1 correct: PD Pre-K, Congratulations, you know as much about PD as the average American! Disagree with an answer or the scoring of questions? Comments are welcome below.

Sunday, March 20, 2016

Parkinson's Trivia: A PD Activity You Can Do With Your Support Groiup

The question comes up every month. What to do for the support group? I've hit up the voice pathologist three times now, the dietitian twice, and the kindly movement disorders doctor twice, too. I need something fresh, that hasn't been  done to death. Something to get the group interacting with each other. After beating my defective brain out, it came to to me: Parkinson's trivia!

I set up a few categories, did some light research on the Web, and, hey, presto! Instant meeting. You're welcome. Here are the questions and answers.

Category 1: Well-Known PWP

1.) This Man was the subject of a bio pic starring Will Smith.

Answer: Muhammad Ali

2.) This British actor, who starred in 1960’s films like “Monte Carlo or Bust” was noted for his roles as an upper class cad.  Answer: Terry Thomas

3.) Possibly the worst person in history, ___________ was a frustrated artist who rose to power in the 1930’s in Germany.    Answer: Adolph Hitler

4.) This dictator was  the subject of as running joke on Saturday Night Live “_________ ______ _________is still dead.”     Answer Generalissimo Francisco Franco

5.) This dictator was known for his “Little Red Book”  A: Mao Tse Tung

6.) This Photographer was noted for her Depression-era images During her unique career, __________________ was torpedoed in the Mediterranean, strafed by the Luftwaffe, stranded on an Arctic island, bombarded in Moscow, and pulled out of the Chesapeake when her chopper crashed. She was the first Western photographer to document Soviet industry after the revolution, to create a travelogue of Czechoslovakia and other Balkan states just before Hitler moved in to ignite World War II, and was stationed in Moscow just before Germany bombed its former ally.    A: Margaret Bourke-White

7.) Author and disillusioned Communist, _________ _______ is most famous for his novel attacking Stalin's regime, "Darkness at Noon", but wrote on Science, Judaism, and the paranormal as well.
A: Arthur Koestler 

9.) Surrealist Painter, known for walking his anteater on the streets of Paris. A: Salvador Dali

10.) This evangelist preacher was known for his association with presidents like Nixon and Johnson.  A: Billy Graham

11.) This man was the leader of one of the world’s biggest Christian denomionations  A: Pope John Paul

!2.) Champion American cyclist started a foundation to inspire and inform People with Parkinson’s          A: Davis Phinney

13. A neurologist, and the first person to run a four-minute mile  A: Roger Bannister

14,) American Writer and Journalist, formerly of  The New Republic And Slate A: Michael Kinsley

15,) American actor who specialized in Macabre, creepy roles   A: Vincent Price

16.) One pf the great singers to come out of Rock and Roll, this 11- time Grammy winner later went on to sing standards and perform in Gilbert and Sullivan on Broadway    A: Linda Ronstadt

17.) This Country Music legend was known as “The Man In Black”.  A: Johnny Cash

18.)English actor who made his reputation as a tough guy in movies like “Mona Lisa” and “Who killed Roger Rabbit?”    A: Bob Hoskins

Category 2: Symptoms 

1.) PD symptoms involving the ability to move are called “________ Symptoms”
A: Motor

2.) PD symptoms that do not involve moving are called"__________ symptoms”  A: non-motor

3.) The loss of this sense can precede onset of motor symptoms by a decade.  A: Smell

4.) Diagnosis of PD depends on what three symptoms?   A: Tremor, slowness, stiffness

5.) REM  ________ disturbance can be one of the early symptoms of PD  A: sleep

6.)  By the time motor symptoms appear, PD Patients have lost  _______ percent of the dopamine producing neurons in the deep part of their brains   A: 65-80

7.) Involuntary dance-like movements that some people with PD exhibit are not a symptom of the disease, but a side-effect of what medication?  A: Sinemet

8.) A soft, hoarse ____________ is a frequent symptom of PD. A: Voice

9.) The tiny handwriting associated with PD is called _______________.   A.) micrographia

10.)  The parkisonian gait, characterized by a rapid shuffling of the feet is called __________   A: festination.

11.)  A symptom that appears often before the onset of motor symptoms is _____________, which can be treated with prunes.  A: constipation

12.) ________________ are a non-motor symptom that involves seeing things that don’t exist. It  is more common in older patients, or those with dementia than those who do not have dementia.  A: hallucinations

13.) “Bradykinesia” means  _______________  A: slow movement

14.) A resting remor” characteristic of PD diminishes when muscles are  ____________   A:  moving.

15.)  “The Pull Test”  a moderately  forceful backwards tug is performed by doctors to assess _______________   A: balance problems

16.) It is difficult to read the emotions of many PWP because of  “Facial ___________”                  A: masking

17.) The often painful involuntary tensing of  muscles common in PD is known as _________    A: dystonia

18.) Reduced swallowing in PD leads to _______________   A: drooling

Category three: Treatment

1.) Sinemet known as the  “gold Standard” for PD treatment is a combination of what two substances?    A: levodopa and carbidopa

2.)  Carbidopa is added to levodopa to prevent patients from __________.  A: vomiting

3.) Drugs like Requip and Mirapex are drugs that act as replacements or helpers to dopamine in the brain are called “dopamine ______________   A: agonists

4.) Carbidopa And Levodopa, or “Sinemet” was first developed in what decade?  A.) the 1960s

5.)  Obsessive gambling, shopping or sexual activity have been unwanted side-effects most associated with what type of PD drugs? ______________   A: dopamine agonists

6.) DBS is an acronym for what?  A: Deep Brain Stimulation

7.) Exercise, when done properly can reduce  symptoms by as much as __________     A: 35%

8.) Before the introduction of Sinemet, A patient lived _________ years after diagnosis with PD  A: 10-15

9.)  With Sinemet a person can reasonably hope for a  _______ life span.    A.) Full

10.) Disqualifications for Deep Brain Stimulations include __________ response to Levodopa.  A: poor

11.) Loss of balance can be countered by ___________ A; exercise like  Tai Chi and Yoga

12.) Phasing in a new medication by slowly increasing the dosage over an extended time is called  ___________    A: Titrating

14.) The drugs known as MOA-B inhibitors block a chemical in the brain that ________________  dopamine in the brain     A:  breaks down

15.) What is the best form of exercise form of exercise for PD?   A: Whatever you will do regularly and stick with.

16. If you suffer from, and are not treated for ______________ , this non-motor symptom will make it difficult to  effectively treat the other symptoms of PD   A: depression

17.) The earlier one intervenes in treating PD, with medicine or exercise, the better _____________  A: one will handle the disease over time

Tuesday, March 15, 2016

Library Journal posts starred review of My Degeneration, A Journey through Parkinson's Disease

At Library Journal, they know books. So it has to be a good thing that they gave a starred review to My Degeneration, right? Here is where I would ordinarily pivot and confound reader expectations by arguing otherwise. But what author in his right mind would argue with this? "Dunlap-Shohl’s journey of setbacks and triumphs contextualizes key disease information within a narrative suffused with emotion and wry humor. PD patients, families, and caregivers will find it valuable; those who enjoy memoirs will appreciate its compelling real-life drama." Not me. 

Here is the review.