Thursday, October 20, 2016

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

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

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

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

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

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

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

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

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

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

Tuesday, October 18, 2016

ENDPAIN Interview: The Weirdness of Parkinson's Disease

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

Tuesday, October 4, 2016

Anchorage Parkinson's Support Group Member Attends Her Own Celebration of Life

In one of the neatest tricks since Tom Sawyer attended his own burial service, Sheri Hadley, who is a member of our support group, went to her own celebration of life. The celebration took the form of a bittersweet and raucous Old-Time Fiddle jam. It was attended by musicians from across the state.

Sheri has a Parkinson's-like illness. The disease, Progressive Supranuclear Palsy is one of a small number of disorders similar to, but more virulent than "garden-variety" Parkinson's Disease. Among these other illnesses frequently mistaken for Parkinson's are Dementia with Lewy Bodies, and Multiple-System Atrophy. These diseases tend to progress more quickly than PD, and are resistant to the treatments that normally make possible a decent quality of life, at least for awhile, in normal Parkinson's.

Faced with the bleak outlook, Sheri did not retreat into denial. Instead she made a memory for herself and for her large circle of friends that will be a comfort to all who took part. The memory I will take with me is of a woman brave enough to not let imminent death rob her life of joy. Bravo, Sheri!

You can read more in Michelle Theriault-Boots story in The Alaska Dispatch News.

Monday, September 12, 2016

Hillary's "Parkinson's Diagnosis" a Second Opinion

I wasn't going to get into the dogfight over the supposed "diagnosis" of Hillary Clinton as a sufferer of Parkinson's Disease. Why not? Because neither I nor anyone who is not a trained neurologist and hasn't performed a rigorous examination of the patient, is qualified to render a credible opinion. This didn't stop Florida anesthesiologist Ted Noel.

Dr. Noel posted a video to YouTube outlining his shoddy case for a PD diagnosis of Mrs. Clinton. This is where I got dragged into the matter. Noel quotes a post I wrote for the Northwest Parkinson's Disease Foundation as evidence for his opinion. (the quote appears at 3:22.) As noted above, I do not have the expertise to diagnose Parkinson's. But I didn't spend a quarter century newspapering without learning what bullshit looks like, and have no problem diagnosing that here.

Dr. Noel starts the video well enough, pointing out his lack of familiarity with Clinton's medical history and present condition by admitting that he is not her personal physician. Given that, he could not "claim that what I have to tell you is a conclusive diagnosis." He was right enough about that, and should have quit there. Instead he goes on to cherry-pick symptoms to make his case, contradict biology on Parkinson's side effects and speculates about what he is clearly ignorant of.

Below is a list of symptoms of Parkinson's disease. As you can see, it's quite long. There are plenty of symptoms if you want to cherry-pick among them to support your thesis. What's more, Parkinson's patients usually present some but not all of these symptoms. An example of how slippery PD is to pin down: some PD patients do not even have the hallmark symptom of tremor. Can you begin to see how complicated and difficult it is to diagnose this disease? I've read of studies that showed a third of diagnoses made by neurologists without specialized movement disorder training are mistaken.

There are no studies of how well anesthesiologists like Dr. Noel do at diagnosing PD, because it's so obviously a bad idea.

Here is the edited list of symptoms  from the Parkinson's Disease Foundation's Web site.
  • Resting Tremor: In the early stages of the disease, about 70 percent of people experience a slight tremor in the hand or foot on one side of the body, or less commonly in the jaw or face.
  • Bradykinesia:  means “slow movement.” A defining feature of Parkinson’s, bradykinesia also describes a general reduction of spontaneous movement, which can give the appearance of abnormal stillness and a decrease in facial expression. The reduction in movement and the limited range of movement caused by bradykinesia can affect a person’s speech, which may become quieter and less distinct as Parkinson’s progresses.
  • Rigidity: causes stiffness and inflexibility of the limbs, neck and trunk.
  • Postural Instability: One of the most important signs of Parkinson’s, a tendency to be unstable when standing upright.
  • Freezing: Freezing of gait is an important sign of PD that is not explained by rigidity or bradykinesia . People who experience freezing will normally hesitate before stepping forward. They feel as if their feet are glued to the floor. For reasons unknown, freezing rarely happens on stairs.
  • Micrographia: This term is the name for a shrinkage in handwriting that progresses the more a person with Parkinson’s writes. This occurs as a result of bradykinesia, which causes difficulty with repetitive actions.
  • Mask-like Expression: This term means a person’s face may appear less expressive than usual.
  • Unwanted Accelerations: Some people with Parkinson’s experience movements that are too quick. These unwanted accelerations are especially troublesome in speech and movement. People with excessively fast speech, tachyphemia, produce a rapid stammering that is hard to understand. Those who experience festination, an uncontrollable acceleration in gait, may be at increased risk for falls.

  • Other symptoms
Stooped posture, a tendency to lean forward
Impaired fine motor dexterity and motor coordination
Impaired gross motor coordination
Poverty of movement (decreased arm swing)
Akathesia: agitation
Speech problems, such as softness of voice or slurred speech caused by lack of muscle control
Difficulty swallowing
Sexual dysfunction
Drooling and excess saliva resulting from reduced swallowing movements
Sleep disturbances
Bladder problems
Sexual problems
Excessive saliva
Weight loss or gain
Vision and dental problems
Fatigue and loss of energy
Fear and anxiety
Skin problems
Cognitive issues, such as memory difficulties, slowed thinking, confusion and in some cases, dementia
Medication side effects, such as impulsive behaviors
Let's look at Dr. Noel's analysis of Clinton's symptoms. His claim that she suffers a parkinsonian head tremor is underwhelming. The tape he cites as evidence of head tremor (at 5:47 of the video) is more rationally explained as body language that says "Go on, I'm listening." It bears little resemblance to a PD tremor, it's way too slow. A pd tremor occurs at five times per second, according to Johns Hopkins Medical school.

Likewise his treatment of "freezing" episodes rings false. He focuses on an incident where Clinton trips on a staircase, (5:15 in his video) saying this is an example of a Parkinson's "brain freeze."* In fact, most of us who have PD notice stairs are mysteriously easy to climb. Before my brain surgery I often would make painfully slow progress across an open expanse of flooring, punctuated by periods during which I would come to a complete halt only to bound up the stairs when I finally reached them. As the Parkinson's Disease Foundation notes "For reasons unknown, freezing rarely happens on stairs."

You can judge for yourself  Dr. Noel's wacky analysis of Mrs. Clinton's "hand posture". (6:51) Clinton is behaving quite normally in the tape he cites as evidence of brain dysfunction. The only posturing here is Dr. Noel pretending to know what he's talking about. 

One thing that is known by everyone with PD but not Dr. Noel is that freezing and dyskinesia don't happen at the same time. You freeze when you are low on dopamine. You have dyskinesia, excessive uncontrollable motion, when you have too much dopamine on board for your brain to handle. Dr Noel explains head movements by Clinton that he finds odd (around 8:56) as dyskinesia set off by a freeze. But how can a person suffer from too much dopamine and too little at the same time?  It's never happened to me.

The nonsense flows through the rest of the tape. Dr. Noel flies by the seat of his pants through unfamiliar territory, dispensing misinformation. For instance, he says Clinton's use of the term short-circuit is odd. "The term short-circuit is not in slang usage." he claims.

Short-circuit there.

His gibberish and speculation leave no room for credibility.

One thing is clear to me after reviewing this sorry mess. I wouldn't let this guy treat my dog, let alone my Parkinson's Disease. **     

*Incidentally in 14 years with diagnosed PD, I can't remember anyone refer to freezing episodes as a "brain freeze" Everyone knows that term describes an ice cream headache.

**Further debunking of this matter can be found at this link to Snopes.

Saturday, September 3, 2016

What's Up in Anchorage in the Parkinson's Department for the Month of September

Hello friends, it's time for our monthly round-up of the panoply o' Parkinson's events plodding toward you in September, like some rough beast out of  a William Butler Yeats poem. What do the portents portend? Let's cast the Runes aloft and see...

Monday the 12th at 1:00, LIVE from SPOKANE it's the return of the Telehealth Conference! These live, interactive teleconferences about different PD topics bring in the experts to enlighten we Parkspeople about various aspects of coping and caring. The topic this month is Acupuncture and the benefits to those affected by pain and chronic conditions, as well as who acupuncture works for, and a demonstration. To find the Anchorage area venue for 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.

Also this month, the Yoga for Parkinson's group will continue to meet Tuesdays at 1:30 at The Alaska Dance theater studios, 550 E 33rd Ave, West of  the Moose's Tooth. Gentle Yoga for PD people who wish to work on their flexibility and balance, led by our very own Rocky Plotnick or our very own Susan Wong.

Then we have our usual meeting the 17th of September at 3:30 at the Anchorage Pioneer Home. I will be traveling, and so will miss it. As someone pointed out at our last meeting, this provides an excellent opportunity for everyone to get together to plot a coup and topple me from power as president-pro-temp-apparently-for-life of the support group.  If that doesn't interest you, I believe we will have a new member there who is anxious to brainstorm about ways to make sure the unique needs of Parkinson's patients can be better served in hospitals.

Finally, a question. Is anyone from the group planning to attend World Parkinson's Conference in Portland? If so, please email me.

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?"


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,

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,

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!"

 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.