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 this, 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 was 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. Oy. Vey.

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 consider: 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 over 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 John 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, Sherri 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.

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!

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.

Friday, March 11, 2016

March 19 Meeting Agenda- Parkinson's Trivia!

Hola Amigos!  I'm back from the Southern hemisphere, re-energized, and and ready to ...uh, take a little nap. But before I  do,   ...ZZZZZzzzzzzz...   oops, sorry,  where  was I? Oh yeah, South America, where they are borrowing Summer from us, but plan to return it by June. What do we do in the meantime? Let's put on a meeting! Let me check the big board, campers, for the date of the third Saturday in March, ...and it looks like March 19, 3:30 at the Pioneer Home is the date, time and place. We will play Parkinson's Trivia, so don't miss this bang-up opportunity to strut your PD IQ! And, looking ahead,  mark your calendars for the May meeting, we'll have a guest from the group PD advocates. Their mission is to get good information about Parkinson’s care and treatment into the hands of PWP, and to work with individuals with Parkinson's anywhere in the country to help them with any PD-related issues. It sounded too good to be true, but I checked them out and they come with high recommendations from people who work with them. 
That's all for now, see you the 19th!

Wednesday, February 3, 2016

February and Parkinson's in Southcentral Alaska

Hello Friends, it's time once again to take keyboard in hand and dish the PD scoop for the month. To lead with good news, it's NO LONGER JANUARY!
I think we can all agree that's a good thing. See? we're making progress! So what's in store for February?  Well, as usual there will be a Telehealth interactive broadcast on February 8th 2016 at 1PM (To find the Alaska meeting, 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 speaker will be Sabina Gonder CHC Topics: Sleep Health and Hygiene. Learn why getting enough sleep is so important to your overall health, and steps to get more sleep every night.

Our regular support group meeting is set for February 20th. I will have to miss the  meeting because I will be in South America, (really!) but there is no reason that everyone else should not show up, talk with one another, offer each other support and, most important, plot the coup that ousts me as leader while I'm not there to cheer it on. 
Adios, Amigos!


Tuesday, January 26, 2016

Non-Motor symptoms of Parkinson's Disease, and Things That Seem to Help for Most of Them

Here is a modified text of a presentation I made to our support group’s January meeting. This is a huge topic, and the attempt here is to provide an overview. Thanks to the Parkinson's Disease Foundation's website, which I relied on heavily in putting this together.

Everybody knows Parkinson’s Disease is an affliction of the brain which interferes with “motor” or “movement” abilities, right? The truth is actually more complicated. PD also packs a number of potent  non-motor symptoms, affecting the brain and other parts of the body.

The list of non-motor symptoms of PD is as long as it is dispiriting. The Parkinson’s Disease Foundation breaks the non-motor symptoms into two groups “Early” and “Other”. Some non-motor symptoms can pre-date motor problems and diagnosis a decade before motor symptoms show up. Early non-motor symptoms of Parkinson’s include:

• Loss of sense of smell
• Constipation
• Mood disorders (Depression)
• REM behavior disorder (Acting out vivid dreams)
• Orthostatic hypotension (Low blood pressure when standing up, at times resulting in fainting.)

Just for fun, let’s poll the group. Before you were diagnosed, how many had

Smell  disruption/dysfunction?


Depression or apathy?

REM behavior disorder?

Orthostatic hypertension?

(Boy, that was fun. Many hands went up for each symptom)

One or more of these early symptoms is not seen as a a sure sign that a person will develop Parkinson’s, but there is strong correlation, and these frequently signal the eventual onset of Parkinson’s Disease. NB: There is a significant advantage to recognizing PD as early as possible. Studies have found that the earlier a person intervenes in their case of PD with exercise and appropriate treatment, the more gentle the progression of the disease will be.

The Parkinson’s Disease Foundation lists some of the non-motor symptoms on their Website, including the following that can crop up anytime, but not necessarily in every patient with Parkinson’s Disease.

• Sleep disturbances
• Constipation
• Bladder problems (urgency-Must go NOW!)
• Sexual problems erectile dysfunctions
• Excessive saliva (Drooling)
• Weight loss or gain
• Vision and dental problems
• Fatigue and loss of energy
• Depression
• Apathy (not the same as depression.) Apathy a general sense that you haven’t the energy to initiate anything, can’t be bothered.
• Fear and anxiety
• Skin problems
• Cognitive issues, such as memory difficulties, diminished executive function,
( Executive function helps you:
Manage time
Pay attention
Switch focus
Plan and organize
Remember details
Avoid saying or doing the wrong thing
Do things based on your experience) 
executive function deterioration likely linked to the consecutive involvement of other brain regions, such as prefrontal cortex (Owen 2004), hippocampus (Bruck et al. 2004), and amygdala (Ray and Strafella 2012). These data are also supported by preclinical results showing that, in experimental parkinsonian models, the animals are impaired in behavioral tasks mainly mediated by brain areas other than the striatum, such as the hippocampus or the prefrontal cortex, as reported above.

• slowed thinking, confusion and in some cases, dementia
• Medication side effects, such as impulsive behaviors

In addition, I would consider the following as non-motor symptoms as well
• “Parkinson’s smell” a Scottish woman  ascribes a “musky” odor to PD, and was quite accurate when tested on her ability to distinguish garments that had been worn by people who had PD from garments worn by people without Parkinson’s Disease.
• Hallucinations

Much of this seems pretty serious, but it wasn’t until recently that non-motor symptoms were recognized as consequential or given much weight in treatment. The good news is that there are effective therapies for many of these problems.

The following overview is not exhaustive of possible treatments, Rather, it represents what one guy was able to turn up in a hasty afternoon of searching. You should consult your doctor before pursuing changes in treatment.

in 2010 American Academy of Neurology March 15, 2010  issued new guidelines outlining what it says are the most effective treatments for non-motor symptoms common in people with Parkinson’s disease. These include sleep disturbances, fatigue, constipation, and sexual problems, which the AAN says are often unrecognized symptoms.
The guidelines say that:
Erectile dysfunction, can be treated with the drug sildenafil citrate (better known as Viagra).
Constipation can be improved by the drug isosmotic macrogol. (Movicol) ( I should note that before adding more medications to your current list it’s worth trying a high-fiber diet, plenty of water, and/or prunes and/or prune juice. - Peter)
Excessive daytime sleepiness can often be treated with modafinil, (Provigil) which helps people feel more awake. (Or coffee, and green tea, both have caffeine and are loaded with anti-oxidants and other helpful substances, and if I remember right, consumption of both are correlated with a lower incidence of PD in populations this has been studied in -Peter)
Fatigue may be eased by taking the drug methylphenidate.(Ritalin)
Orthostatic Hypotension, According to the Parkinson's Disease Foundation may be treated by the following:

If you can recognize your symptoms and are aware of what makes them worse, you can take steps to reduce and avoid them.

Most important is to avoid dehydration, especially during the months of hot weather.  Ask your doctor to identify the medications you are taking that may lower your blood pressure, and see if a change in dose is indicated.  Avoid abrupt changes in position.

Be aware of behaviors and circumstances that can make orthostatic hypotension worse.
These include the following:
  • dehydration
  • exposure to heat
  • fever
  • prolonged standing
  • vigorous exercise
  • drinking alcohol
  • certain times of day (especially early morning)
  • straining while going to the bathroom
  • changing the position of the body (e.g., standing up)
  • meals high in carbohydrates

So that leaves the following symptoms from our list:
Sleep Disturbances: Some sleep problems can be helped by administering melatonin or clonazepam. I noticed that interruptions of sleep, particularly those associated with the need to urinate decreased greatly after I underwent Deep Brain Stimulation surgery.
Bladder dysfunction: There are various drugs to treat different facets of this problem. Consult your doctor, is my advice. Again, I noticed a substantial improvement in my struggles with this after Deep Brain Stimulation surgery
Excessive saliva (Drooling) treatment: Botox can treat this, or try gum chewing. If you can chew gum and drool at the same time, you’re multi-tasking!
Weight loss or gain: According to the Parkinson’s Disease Foundation, People with PD often lose weight prior to the diagnosis of PD, for a variety of reasons such as loss of smell and taste.  The weight loss usually levels off once people are on appropriate PD medications.  For this reason, ongoing, unexplained weight loss in PD should never be attributed to PD until more serious medical issues such as cancer and depression have been excluded.  If swallowing is contributing to the problem, a speech language pathologist can do a swallowing assessment, especially in advanced Parkinson’s.
For weight gain Parkinson Canada has this advice: “Stringent diets may decrease your energy.  Try to stabilize your weight by eating nutritious meals, controlling portions and being as active as possible. Consult a nutritionist or dietitian to help plan a healthy, gradual weight loss program. Compulsive eating (binge eating) may be a side effect of Parkinson medications. If you are experiencing this behavior, tell your neurologist/doctor.  Often medication can be adjusted which can reduce or control the behavior.”

Vision: The PDF says be aware of how medications affect vision - medications containing levodopa (Sinemet, for example) can improve movement-related symptoms as well as contrast sensitivity while other drugs may exacerbate hallucinations
Have a thorough eye examination
Get two pairs of glasses – one for distance and one for reading – may be better than bifocals, or your ophthalmologist may prescribe prism glasses
Apply warm moist compresses or ointments for eyelid irritation
Use artificial tears to moisten dry eyes
Dental problems Perhaps the simplest intervention is an electric toothbrush, which provides the fine and repetitive motions that protect teeth most effectively.

Depression treatment: Anti-depressants can be effective. Lexapro works for me. Exercise may help with depression.
Apathy: There are no medications proven specifically to help apathy. Overcoming apathy starts with being in the best possible health, and ruling out other causes for feeling sluggish. With your doctor evaluate and optimize your PD medications — better movement may reduce apathy.
Get tested for both depression and apathy — standard rating scales can help you and your doctor find the cause of your mood. If you have depression, get treatment.
Discuss ways to get the most restful sleep possible — sleep difficulties are common with PD, and contribute to fatigue.
Discuss other treatment options — although, as noted above, there are no approved medications to treat apathy, some patients may benefit from cholinesterase inhibitors (rivastigmine, etc.), stimulants, or certain types of antidepressants.

Fear and anxiety: The Veterans Administration says Treatment of Anxiety in PD is the use of Selective serotonin reuptake inhibitors (SSRI) Effective for all types of anxiety including obsessive compulsive disorder Considered first line by most VA physicians May take several weeks to work Start at low dose and increase slowly.

Skin problems: A good summary of skin problems and treatments here.

Cognitive problems: This is a huge topic, so for our purposes its best to refer you here, or here.

Medication Side Effects, such as compulsive behavior: Consult your doctor, reduce or discontinue use.

"Parkinson's smell": So far we know of only one person in the world who can smell PD, and she lives in Perth, Scotland. So let's just not worry about this.

Hallucinations in PD are not well understood. Usually the first thing tried is a reduction in dopamine-precursors (levedopa) or dopamine agonists. But I have read of recent studies that found PD patients who hallucinated without being on medication.

Tuesday, January 5, 2016

Parkinson's events in Anchorage for January

I hesitate to urge my balance-impaired compatriots out on the world's largest ice rink, but you may decide for yourselves between risking a fall and risking cabin fever. Here to help you with that choice are the things that might tempt you to go out.
The Telehealth presentation for January will be broadcast on Monday, January 11 at 1:00 pm on the campus of Providence Hospital. To find the Alaska meeting 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 speakers for this interactive broadcast will be Jessica Yaeger and team, Gentiva Home and Hospice Health Representative, Topics: Hospice.
Myths discussed and questions answered.For more information contact : Parkinson’s Resource Center of Spokane at 509-443-3361 or by email at  By the way, many of the past teleconferences are archived and you can watch them here

Our regular support group meeting will be Saturday, January 16th, our topic will be the non-motor symptoms of Parkinson's Disease.
Best wishes to all of you for 2016!

Parkinson's, Luck, and Imagination

Here is still another of the monthly posts written for the Northwest Parkinson's Disease Foundation. Visit their website for an astonishing amount of terrific Parkinson's Disease info.

Illustration 1.5.15

I was diagnosed at 43 years old with Parkinson’s Disease. Bad luck, right? I suppose.  I hadn’t done anything conscious to court the disease, and had none apparent in my family history. It was just a miserable turn of the cards. If not luck, what is it that determines who suffers from PD and who doesn’t? What other explanation could there be?

Some people insist it is part of God’s wonderful plan for our lives, all will be understood bye and bye. It’s God’s will that I have a progressively incapacitating and incurable disease? It’s God’s will that I become stooped and drool, my ability to think impaired, my voice inaudible, my movement slow, my muscles cramped and pained? For this the omnipotent and beneficent God has singled me out? For this he has chosen me, for reasons beyond my poor power to comprehend, to be one in a hundred who suffers from Parkinson’s Disease? I honestly don’t get it.

I prefer the bad luck theory. At least, like a mafia killing, it’s not personal.

This leaves us back where we started. There are many ways luck can be sliced and spun. You can try to make a person feel better about their fate by pointing out the mitigating factors. At least you’re “lucky” it’s not one of the Parkinson‘s Plus disorders, with their rapid and devastating disease courses. At least it’s not a brain tumor, a swift and deadly killer. At least we have levodopa, exercise, and surgery to help with symptoms. That is, for a while. And for the ones who have the means to access to these modern wonders. Cheer up! In the big picture, you have lots of little breaks of good luck to soften the hammer blows of the bad.

This is less than comforting. If it’s merely luck, it can and will turn. There is no reason to believe your relative bits of good luck will hold, or for that matter that your bad luck will last. Maybe you will develop cancer, maybe an imaginative scientist will come up with a Parkinson’s cure. But it doesn’t depend on how nice you are, nor how immaculate your life has been. It’s how the dice fall.

Who wants to depend on such a fickle force? Surely there is something else.

Maybe it’s not much, but we do have each other. Human history and civilization is distinguished by the ability we have to blunt the edges of a dangerous, random Universe. We can and do make the journey through life safer, more interesting and enjoyable. Or, yes, we can make it more dangerous and difficult. Because we have the power to imagine the world as different, we have the ability to change it. 

This power seems unique to the human species, at least on Earth. We learn to set the broken leg, to weave blankets for the cold, to coax and improve crops from the earth, to celebrate the joy of life through art. Or we wire the bomb, brew the poison, plot the kidnapping, do the things that make life a more tenuous, precarious struggle. Which of these you do with your time here is yours to choose.
But you do have a debt. If you are reading this, your struggle with Parkinson’s has certainly already been made easier by those who put their imagination and effort into lessening this disease’s destructive power. Caregivers, researchers, fund-raisers, doctors, organizers, volunteers, and experimental subjects have all contributed. It’s what humans do at our best, what makes us unique. Lucky us.