Thursday, April 13, 2017

April Meeting agenda: Hospice and End-of-Life Concerns

Hello friends, We don't expect this Saturday's meeting to be canceled by snow (looks nervously skyward.) So you are all urged to attend the support group. We will have a presentation  from Autumn Pudge of Frontier Home, Health and Hospice, who will speak on "Hospice Services/philosophy, end-of-life, and future planning, etc. I'll bring along any useful handouts/material/information, and answer any questions-or at least suggest a direction for finding any specifics or answers I may not have." 

I hope to see you there as I do not relish the idea of facing this alone!

3:30 the 5th floor, West Lounge of the Pioneer Home,

Until then, I remain your humble servant,


Tuesday, April 11, 2017

Shakey-speare: Parkinson's Awareness Month Meets Poetry Month

Long-time friends of this blog (both of them) are all too aware that April is both Parkinson's Disease Awareness Month and Poetry Month. I like to celebrate this cosmic coincidence by mashing up two things that go together like Brussels sprouts and ice cream, namely, PD and Poetry. How? Easy! By  penning, or, more accurately, keyboarding, a Pd poem. Still with me? Good. Here goes...

"I've never seen a Parkie Cow..." No that won't do... "A parkinsonian lad, name of Tucker, was one crazy, tough little ... " no, better not go there...  "Roses are red, Parkinson's shakey, when I'm dyskinetic, my movement is snakey..." no, no!..

OK, I think I got it...

Thursday, March 16, 2017

March 18th Support Group Meeting, Preventing falls

We're going to meet the heck out of this week's meeting. You ask "What's on the agenda, Pete? Or is this going to be another of your last-minute improvisations, like the time you led a two-hour discussion of the topic 'Pachyderms and Parkinson's, a tragedy not waiting to happen'"?

Well, glad you asked. We will have a roughly 30 minute presentation on falls and their prevention. This is a topic of critical interest, as falls can lead to drastic impairment and even death from complications for people with Parkinson's. So you have a simple choice: Come to the meeting or face a journey into the great beyond.

No pressure.
See you there, the usual time and place, 3:30 Saturday (the 18th) in the upper reaches of the Anchorage Pioneer Home, the 5th floor West lounge.

Tuesday, February 28, 2017

Tired of Coping? Tips for Those Who Want to Make Their PD Worse

We smarty-pants bloggers are quick to nag with ways to make your life with Parkinson’s Disease better. We constantly scan the horizon for the latest about what you can do to enhance your quality of life, despite the fact that a progressive, disabling and incurable disease has you in its coils, slowly but surely squeezing the breath out of you. It’s not easy, but you can learn to deal with this unhappy fact in a  way that is meaningful, effective and dignified.

But trying to cope well to make your life better is not the only way to respond to Parkinson’s Disease. Some people seem intent on finding ways to make their condition tougher on themselves, their family and friends. In the interest of fairness it’s time to give these people some advice, too. So, without further ado, allow me to present pro tips on making your PD even worse.

• Tip one, wallow in denial. This used to be good advice for everyone with Parkinson’s Disease. After all, in the earlier days of PD treatment (a time period covering the dim early origins of our species up until almost the present day,)  there wasn’t a damn thing we knew of that would change the course of the disease. Back then it was all about managing decline. So denial was a luxury you could afford. But now we know early intervention in the form of exercise and introduction of medicines that control symptoms lessens the grade of your downward path. Your symptoms will remain milder for longer if you practice early intervention. Denial negates the sense of urgency to intervene, so it is clearly the way to go if you want to make your PD worse.     

• Tip two, avoid exercise at all costs There are countless good reasons to avoid exercise if you wish to worsen Parkinson’s Disease. Exercise can have dramatic impact on the severity your symptoms, reducing them up to 35% in some well-documented instances. Exercise is relatively cheap, and can take whatever form you find the most enjoyable, (or the least miserable.) Symptomatic improvement, including tremor reduction and improved balance has been shown in a wide range of activities, everything from boxing through gardening.  It can’t be any clearer, if you want your case of Parkinson’s to be truly  excruciating, take the elevator, not the stairs to worse health.

Tip three: Poor adherence to pill dosage and schedule We who have Parkinson’s have a number of medications, some quite powerful, for relieving our symptoms. Precisely compounded under strict laboratory protocols, they deliver a carefully measured dose of relief to soothe our whacked-out nervous systems. These exquisitely calibrated amounts are customized to our individual stage and severity of disease. Dosages are then married to a schedule worked out between the patient’s experience of their effects and the doctor’s knowledge of the medications efficacy, interactions with other medications, and side effects. The end result is an ongoing routine like a well-oiled bicycle chain meshing in rhythm with a sprocket to drive the entire enterprise smoothly forward. Or not.

With surprisingly little effort you can wreak havoc on this delicate balance. Take too high a dosage or take the medicine too often, and you will become a wriggling mass of uncontrolled jiggling. Take too little, and you will grind to a halt, your stride will shorten, and you will increase your danger of falling. This can be done without any  conscious effort at all by merely forgetting to take a scheduled dose.

I could go on, but these should be enough to do serious damage, good luck with that.

Thursday, January 26, 2017

Getting My JAMAs On, Journal of the American Medical Association has Kind Words for Comic About PD

It seems that there has been a gap in my role of relentless self-promoter. At the tail end of December, 20016, The Journal of the American Medical Association praised the heck out of my now-a-year-old graphic-novel-style memoir of coping with Parkinson's Disease, "My Degeneration". And somehow it never got mentioned in this authoritative blog. We here at Off&On Media Enterprises are just sick about this oversight and assure you, loyal reader, that steps have been taken, measures put in place, and the guilty tracked down and summarily dealt with. Our apologies to you, your ancestors, and of course my ancestors.

Is there anything I can do to make it up to you? Probably not. But to assure you of my future  good intentions, allow me to post a link to this article in Parkinson's Life Magazine  about the JAMA article. And if you want to see the JAMA story, why, it's right here. Again, my apologies. It won't happen again.

Friday, January 6, 2017

"Parkie", an Improper Noun?

Parkie. It's a word that slides easily off the tongue , then catches in the craw. Some of us use it freely. Others loathe it. Why?

A fellow PD patient recently made the case against "parkie" in a post on Facebook. Her argument was that the term trivializes PD. Here is how it was put in the post: "I can not think of one other illness, disease or condition that is referred to by a cute nickname. Parkinson's is not a club I wanted to join. I was abducted into it."

Can we think of another disease that gets similar treatment?   "Leukies" for leukemia victims? "Leppies" for those with leprosy? "Lupies" for those with Lupus? "Crohnies" for people with Crohn's?

And yet, "parkies" is used regularly in the community of those with the disease.  I have always felt a bit wary of the term, though I used it in the company of allies from the PD world. Looking at the list above, I wonder what came over me. My cronies must have thought I was loopy. I can't imagine calling someone with leprosy a "Leppie", there is an air of condescension about it, an unearned intimacy.

But there is a bit of confusion here. The objection above is to referring to an "illness, disease or condition... by a cute nickname." "Parkie" does not refer to the disease, it refers to a person with the disease. And here, context matters.  Used between two people with Parkinson's disease "parkie" is a diminutive that functions a little like the word "namasaste", only instead of the spark within me recognizing the spark within you, it's the pain in me that recognizes the pain within you, my fellow person with Parkinson's. What could be more ruefully human than that?

This also explains why it falls so wrong on the ear when used by someone who doesn't have the disease, or who isn't an active caregiver. Such a person hasn't earned the right to the intimacy of the diminutive, so for them to use it does indeed trivialize PD.

But, parkie-to-parkie, I am glad to have  people around to share the misery. PD forces us to give up so much."Parkie" is the rare case where we get to do something nobody else can.

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, 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.