Coping with PD, a Primer

This post began as an e-mail to a friend with a beloved relative who has Parkinson’s. It is by no means exhaustive, but I’ll bet if you follow these precepts, you will have a gentler descent into disability than if you ignore them. We are the first generation of PD patients who have most of these strategies available to lessen the force of the blows that PD directs at us, it would be a shame to ignore these tools, they are the advances in treatment all of us with Parkinson’s Disease wish for. 

This is a general guide to coping with PD, based on my 20 years of experience since diagnosis. While a diagnosis of Parkinson's Disease can seem like world-shattering bad news, it is actually a moment of empowerment for the person with PD. The problem is now out in the light of day where you can plainly see it and begin to cope. Here are some things to be aware of.

First: intervening earlier rather than later is a key to a slower decline., Studies have shown that the sooner you are on medication, the sooner you do voice therapy, the sooner you institute a regular exercise plan, the less drastic your descent toward disability will be. The lesson here is don't wallow in denial, the sooner you act, the better your long-term outcome.

Second: deal with depression. Talk it over with your neurologist if you are depressed.  (And why wouldn't you be? Your dopamine levels are unnaturally low. At any given time half the population with PD is depressed.) The doctor can prescribe many different medications that are safe and effective. I have taken Lexapro (escitalopram) for almost 20 years now with no detectable side effects. If you don't  deal with depression, your ability to do anything else will be compromised and much more difficult.

Third: Exercise, exercise, exercise. What kind of exercise? The usual advice here is "Anything that you will keep up." That's great, as far as it goes, but the most compelling work done on PD and exercise is by Dr. Jay Alberts, of the Cleveland clinic. His research was done on bicycles and PD. What Dr. Alberts discovered was riding a bike with a pedal cadence between 80-90 strokes per minute for 30 minutes a session three or four times a week reduced Motor symptoms of Parkinson's Disease by a third, and the benefits lasted for a month after the patient was no longer engaging in the exercise. That is a huge dividend, especially when you spread the results across several years! An indoor, stationary bike will work well for this, although I also ride outdoors.

The other form of exercise that is getting much notice is boxing. Boxing requires speed and balance, which are obvious targets for skill-sharpening in PD. I have done the Rock Steady Boxing With Parkinson’s classes and they were helpful on two levels, the exercise itself was beneficial, and second the group was a great source of fellowship and support. I no longer live near a Rock Steady program, but if I did, I would definitely participate. Other types of exercise that have been found to be beneficial for Parkinson's include Yoga and Tai Chi.

Fourth: Learn as much as you can about the disease. You will have better care if you are not on auto-pilot, doing whatever your doctor tells you. The more you understand about the disease, the better partner you can be to your care team. And besides, the brain is fascinating territory we are just now starting to penetrate. For example, it was only recently that the glial (white) brain cells, formerly thought of as mere packing materials for the gray cells, were found to play a much larger role in many previously unknown aspects of the brain's function, or in PD’’s case, brain dysfunction. That is half the brain that was written off by researchers, essentially terra incognita now waiting to be explored.

There are lots of good Web sites devoted to Parkinson's disease, all the large PD foundations have them. One that I especially like is The Davis Phinney Foundation, founded by Olympic cyclist Davis Phinney  They emphasize the enhancement of the average person with Parkinson's quality of life right now, which is a practical and necessary approach, given that the cure is still years if not decades away. Other organizations with good PD info include The American Parkinson’s Disease Association, The Parkinson's Foundation, and The Michael J. Fox Foundation for Parkinson’s Research.    


Fifth: Don't wait to join a support group. There is nothing that can take the place of the  accumulated wisdom of a group. The members will likely have encountered the same rough spots and challenges you will, and can be a rich source of information and solace. Online groups are fine, but they don't have the same gravitas as a live, in-person group.

I only check online groups occasionally, but they can be helpful resources, with the caveat that any Joe Blow can post some cockamamie notion to the group.

Sixth: Don’t prematurely give up the things you love to do because of Parkinson’s Disease. G.K. Chesterton, the British writer once pointed out “Anything worth doing is worth doing badly.” This would make a fitting  mantra for people with PD. I love music, especially the guitar. PD cruelly targeted my guitar playing, sabotaging my ability to play clean and on beat. It occurred to me that I could adapt my playing and simplify my challenges by moving over to playing the mandolin, which has easier stretches and fewer different pitches to tussle with. It did mean I had to learn a new tuning, but it’s good for your brain to practice novel skills. The result was to add years to my playing in a gigging bar band, and making a unique contribution to our overall sound.  Lately I have been exploring the electric guitar, which is in some ways easier to play than the acoustic.

Whew! That’s a pile of stuff to absorb. There are worse things out there than Parkinson’s Disease. As Bill Bell, co-founder of the Northwest Parkinson’s Disease Foundation says “It’s a good time to have PD.”

Isolation and Parkinson's Disease, The hiding and the hidden

This is a reprint of  a blog post I wrote for the Northwest Parkinson's Disease Foundation. 

One of the biggest drawbacks of Parkinson’s Disease is the terrible potential it has to isolate an individual. Getting out of the house, engaging with the World is one of the things that make us human. Shut yourself away from the ebb and flow of human affairs, and your time here on Earth will likely be shorter, and more miserable than it otherwise would have been. Though it will seem longer, by far.

Studies have found that social interaction lessens depression, a common problem associated with Parkinson’s, and that interactions with family and friends increase mental stimulation. These, are well-recognized factors in their importance in coping with PD.

Unfortunately, in yet another sample of the thorough and twisted logic of Parkinson’s,  the disease and its many symptoms work against our healthy impulses to go out in public.

It’s hard to get out for physical reasons alone. We have difficulty moving, which is just the first barrier we must overcome. Then we have our inability to speak loudly and clearly. This can isolate a person effectively even if they do go out. It is demoralizing to attempt to contribute to a conversation, only to be ignored because you can’t muster the volume to get the attention of others. Further, we may be  embarrassed by a tremor, or by drooling. And the mental image of parading your shuffling gait in front of an audience, or gyrating wildly as you careen around a restaurant like a drunk, attempting to maintain your balance, is a serious deterrent to going out.

And then there is all the extra paraphernalia to wrangle, like canes or walkers, and God forbid you forget the pills that now must accompany you wherever you go.

But the biggest thing we have to carry out there is our vulnerability. The fact that we are sick and cannot hide it makes us uncomfortable, partly because it makes the rest of humanity uncomfortable. How? The fact is that if we are vulnerable, so is anyone, and everyone. Why else did Rush Limbaugh famously mock Michael J. Fox? Because Limbaugh is afraid. To belittle Fox is to minimize him as a threat, to put him in a different category, to deny his vulnerability is a shared vulnerability.

The uncomfortable truth is, we all do share that vulnerability. To defer to it by hiding ourselves away not only cuts us off from the rest of humanity, it cuts the rest of humanity off from us, and from the brutal reality that we represent. We are an important reminder to the rest of the race that all are subject to the whims of fortune. Until we can cure this disease, it can and will continue to mysteriously cut individuals out for suffering that carries no explanation or justification.

Humanity is in a position to do something about that. A cure can be found. It is just a matter of time and priorities. As long as the stricken lay low, we make it easier for the rest of the World to ignore our plight. By enabling others to ignore the disease, we come dangerously close to collaborating with it. Because as long as it is ignored, it will continue to claim more sufferers, slowly wring the joy from their lives, and extinguish them.

Your disease has been making you uncomfortable (to say the least!) long enough. Time to let it make someone else uncomfortable. Don’t go out for your benefit, much as it will benefit you. Do it for the rest of humanity. Do it for Rush.

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.

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?

Constipation?

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.

"My Degeneration" a Memoir About Living With Young-Onset Parkinson's Disease

After four years of wandering in the desert, burnt by the Sun, frozen by night, chapped from the wind, infested with sand flies, dazed with heatstroke, faint with hunger, dejected, rejected, demoralized, but nevertheless, oddly optimistic, I seem to have landed a publisher for my graphic-novel style account of my confrontation with young-onset Parkinson's Disease.

The hope is that many who would be intimidated or otherwise disinclined to learn about Parkinson's will find this an alternate way into this complex and destructive disease. I especially wish this to be a comfort to the newly diagnosed, something that can offer credible hope. The initial manuscript has undergone massive renovation to fit comfortably in a series of books that Penn State Press is undertaking on medical comics, created by patients, doctors, nurses etc. on the sensible theory that comics offer a powerful lens to examine the relationships between doctors, patients, disease and how it all plays out in the larger context of community and society.

The plan is to bring out the book, entitled "My Degeneration", this coming fall. Here are a couple of pages. The first is from a section on Parkinson's terminology, the second is from a description of Deep Brain Stimulation, a surgical intervention for Parkinson's Disease as well as several other neurological disorders.

August Parkinson's Disease-Related Events for Southcentral Alaska

Once again it's time to gaze slowly into the crystal ball, and go out on a limb with predictions about what the semi-sultry month of August has in store for those of with an interest in PD...  I see... YES! a Telehealth conference!... Details follow: You are invited to attend the Parkinson’s Education TeleHealth Presentation - A PDTeleConnection Monday, August 11th, 2014 at 1:00PM Providence Hospital Room 2401.

Presentation Titled: The Hidden Message of Anger and Depression Speaker: Elizabeth Daniels, M.A., LMHC Elizabeth is a Mental Health Educator. She has been in private practice as a licensed mental health counselor for 15 years and concurrently taught psychology at the college level for 7 years. She specializes in couples counseling, anger management, depression and anxiety disorders. Topic: The Hidden Message of Anger and Depression. Have you ever felt trapped in the feeling of anger or depression and believed there was no way out? During this talk you will learn the big-picture map of how our emotions work and the directions you need to find your way out of suffering and into a happier life. You will learn: The purpose of anger and depression, How anger and depression are connected and the force that drives them both,  A step-by-step plan to minimize and even eliminate the experience of anger and depression How to decrease anger in others. 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.

Following at a dignified pace behind the TeleHealth event, we come to the August support group meeting, Saturday the 16th, and for once I got off my lazy... Boy Recliner, and actually got us a speaker! A speaker who will speak about speaking! After fighting over the phone all morning with an insurance company and a hotel reservations web site , you can bet I will be listening carefully as the one-and-only Anne Ver Hoef, speech pathologist and LSVT-trained practitioner gives us an earful on talking understandably and swallowing without choking. The usual time, 3:30, downtown and upstairs at the gracious and commodious Pioneer Home. When I put it like that what can you do but plan to be there?

And now, taking a giant step into the future, I see that at the October 18th meeting we will have Dr. Ryder Gwinn, neurosurgeon at Swedish.  He works with the team at Swedish Neuroscience Institute (including Peggy Shortt, Susie Ro, Jennifer Witt and Peter Nora). He will be able to take your questions about the latest on Deep Brain Stimulation, and the neurosurgery program at Swedish in Seattle.

As he crystal ball fades to black, I look forward to seeing all of you LIVE AND IN PERSON at these landmark events.

Your PD Maitre'd

Peter

Low Speed Chase: Pursuing Happiness with Parkinson's Disease

Twice in my life, I thought I could never be happy again. The first time as a boy, when I lost my mother to breast cancer. The second was as a man, when I was diagnosed with Parkinson's disease. I was wrong both times. I started thinking about this after running across this James Fallows interview of Gretchen Rubin about happiness.

Happiness seems in some ways like a lightweight virtue, any idiot can be happy. In fact one could argue that you'd have to be an idiot to be happy in such a broken world, a world that contains Parkinson's and many worse things.

But don't sell happiness short. In no less a document than the Declaration of Independence, the "pursuit of happiness" is listed right behind life and liberty as among the primary rights of all people, conferred on them by their maker. (I know, it lists them as the rights of all "men" not "people" but who among us is backward enough to stick to this limited idea of humanity? OK, who besides Jefferson Davis and Justice Scalia?). So happiness, or at least its pursuit, is our God-given right as humans.

Which brings us to the problem. If you are not able to walk, to talk, to even rise from a chair and remain standing how are you supposed to pursue happiness? It's difficult enough to be happy without the attendant woes of PD. Has our God-given right been invalidated? Should we be eligible for a refund for the unused portion of our lives?

Maybe, but don't hold your breath. As Rick says to Ilsa in the classic "Casablanca", "The problems of three people don't amount to a hill of beans in this crazy world". We are small and helpless creatures. In a way, that's comforting. As individuals we are capable only of limited impact, for better or worse. If the world is screwed up, we hold little direct responsibility.

But if our lives are screwed up, there is hope that we can do something about that. Even with PD, this is not the sort of thing that others can do for you. And it's perhaps impossible for some to do it for themselves. But the idea that we all must go through life miserable can't be right. Who can disagree when Tzeitel tells Motel, the nebbish tailor in "Fiddler on the Roof" that "Even a poor tailor deserves some happiness."

How does a person with PD go about being happy? Strangely, social scientists have found that humans seem to have a happiness bias built into our nature. People have been found to be flexible in what constitutes their idea of quality of life. When their circumstances change, they adjust their expectations and think of themselves as happy in previously unacceptable circumstances. Is this delusion? Perhaps. But if it is successful delusion, how can it be argued that these people are unhappy?

Beyond our natural bent to adjust the thermostat of happiness, what can we do? Begin with the realization that while having Parkinson's Disease is bad, there are certainly worse things. (While I have heard the advice to sufferers that it is helpful to realize that there is someone worse-off than you, this seems like a selfish way to find comfort. Basing your happiness on some other poor bastard's unhappiness seems trollish and uncharitable. It's better to think of ways you could be worse off, and probably more compelling to boot.) Mortality can give us focus. Think of your final hours and what you would regret not having done more of. Then start doing more of that.

If you are like me, the primary thing that will emerge as important from the death-bed perspective is building and maintaining social networks. This can be hard to do with PD, but consider this: there is more satisfaction in doing what is difficult. A great deal of your happiness may lie in how successful you have been in the past at doing this as your network of family, friends, and colleagues helps break your fall. But it is never too late to join a support group, and the amount of comfort derived from knowing you are not alone is substantial.

Next, do not let Parkinson's Disease fool you into giving up what you do for fun. I quit riding my bike for a time because I was convinced that my sense of balance was probably impaired by PD. Well guess what. It probably is impaired, but I can still ride just fine. The feeling of freedom it gives me is a liberating joy. And there are ways to adapt your abilities to do the things you love. When my guitar playing began to suffer from my difficulty in coordinating my left hand, I pursued slide guitar, which in some ways simplifies the role of the left hand and allows the PD-afflicted guitarist some satisfaction when playing in the traditional way no longer can. These types of work-arounds, in addition to to the rewards that they bring in and of themselves, afford the additional satisfaction of feeling that you have outmaneuvered Parkinson's in its relentless quest to take everything you value away.

Third, find some way of helping others. This is a formidable way of connecting with other people. Among the obvious ways of helping for those of us who have PD is to contribute to a support group or participate in medical trials. This is one way your illness, instead of disqualifying you, makes you uniquely suited to lending a hand. Unless you are a psychopath this will contribute powerfully to your sense of self-worth. It will also fortify your social network. Two birds, one stone, dude.

Exercise. There are as many reasons to  exercise with pd as there are cells in your body. Exercise can be done as part of a group, which helps us cope with loneliness and feelings of alienation. Exercise enhances positive body chemistry vis-a-vis depression, and may promote the brain's ability to repair itself.

One common destroyer of happiness is clinical depression. Discuss depression with your neurologist if you notice common depression symptoms in yourself. There are established treatments that are effective for most people. It is not necessary for a majority of us to suffer from this "Noonday Demon".

Please remember that nobody is happy all the time. But the fact that you presently may be  unhappy does not mean you will always be sad. And avoid judging yourself or others too harshly if they seem unable to be cheerful and bright. We have a right to pursue happiness, but no guarantee we will actually find it. Still, if even a poor tailor deserves some happiness, surely a Parkinson's sufferer deserves some as well. Don't give up the chase, even in slow motion.  

Caregiving Teleheath Conference, A Quick Rundown

Finally made it back to a Telehealth conference. These come to us once per month, and are broadcast from a room in Providence hospital that has an interactive interface allowing us to see preseentations from various Doctors, therapists etc. Then we ask them questions. Provided, of course that we can speak loud and clearly enough. Today's session was on caregivng. I took notes because I can't help it, I'm a compulsive note taker. Since I got them, I'll pass them along.

Our presenter, Dr. Dan Burdick, started off by talking about "caregiver burden" which essentially means all the stress they feel that falls to (or on) them due to the fact they are the one primarily responsible for watching over a person with a chronic disease.

Dr. Burdick said that a caregiver's role needn't be burdensome, but that there are a number of factors that tend to make it so. Complications from the patient such as age, disease stage, and depression made things tougher for the caregiver.

Caregivers pointed to things like grocery shopping and transporting their charges as primary contributors to their sense of burden. However the biggest predictor of caregiver burden was depression suffered by the caregiver. Dr. Burdick provided a URL for  people wishing to assess their depression, alas, apparently I copied it down wrong. But don't get all bummed out about it, I found this screener for depression courtesy of the Mayo Clinic.

What can be done to help caregivers bear their loads? Dr. Burdick came up with the mnemonic "EARs", which stands for  Education, Assistance, and Resources.

Education: Learn about PD, its meds and their side effects. Learn how to be a patient advocate. Learn the workarounds for various problems that can be fund through physical and occupational therapy.

Assistance: Build a team of family and friends to pitch in. Find people who will help with shopping or housework. This will help allay another concern, social isolation.

Resources: Support groups (our Anchorage group is fortunate to have a veteran caregiver, Betty Berry to help you with your caregiving questions.) The Northwest Parkinson's foundation has various services to help caregivers including a pamphlet entitled "Who takes care of the Caregivers? Here in Alaska one can also go to the Alaska Department of Health and Social Services for help.

For things a caregiver can do for themselves, Dr. Burdick suggested that caregivers be attuned to their emotional state, and to set aside time for themselves and for social contact. This is not selfish, it's only human. Dr. Burdick said that the people who know how to ask for help, actually last longer than those who just blunder alone along their weary way.

Finally it was noted  that the new roles of "Caregiver" and "patient" become superimposed over the old roles such as husband and wife, parent and child. This can lead to problems as new realities make demands on the old relationship.  One way of coping with this is to keep up  parts of your old roles together- get out for a date or go for a walk.

When the question and answer time came I asked what the patient could do to help keep the caregiver going. One answer: Keep doing the things that are your responsibility as long as you can do them. If you were always the one who made the bed, don't drop this simply because of a diagnosis. If you still can do it, why would you stop? This isn't rocket science, people. Unless you actually ARE a rocket scientist. In which case, continue as long as possible.

    ...

Teleheath Conferences: Telehealth interactive seminars take place at Providence hospital the second Monday of each month, 1:00-2:00 pm in their oncology building off 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.

Comic Sonogram, Another Exclusive Look at a Book Stuggling to be Born

Here is yet another snippet from the proposed Great Parkinson's Graphic Novel currently in pre-beta mode at PDS Labs. These are two panels abstracted from a passage on Parkinson's vocabulary. These illustrate the form of depression which I suffered, known as "Emotional Incontinence". Depression is way more common in Parkinson's Patients than in the population in general, but the incidence in both populations is expected to spike dramatically higher if this project ever sees print.

On the Job Training for People with Parkinson's Disease

Parkinson's is like having a job you never clock out of. It's a combination of clerk, (what pill am I on now? When do I need to order more?) researcher, (what can I learn about this new symptom, that proposed medication, this new technique, that new facility?) dietitian, pharmacist and any number of other specialties that crop up as you make your way on the PD journey. The hours are long, the pay is laughable, and don't get me started on the health plan.

Unfortunately, the reasonable response of "Sorry, I'm not qualified to have Parkinson's Disease" will not deter this ambitious disorder from selecting you for the position. This means that we have to grab every opportunity for learning. Here are highlights from several recent sessions of "on the job training" that I was able to take advantage of.

The first was a web conference for people who blog about Parkinson's Disease that offered us a chance to ask questions of an academic neurologist. The presentation was somewhat marred by the discussion of about PD basics that were familiar territory for those of us attending. The presentation only came alive for me at one point. The doctor was asked about falling and his reply was offered with a note of urgency that gave it impact. His answer was that once you start falling, there is not much that you can do to improve your balance. His advice? A newly diagnosed patient should take up Yoga or some other balancing discipline as soon as possible so as to be so, as he put it "overcompensated" in their balance skills that the disease will have much farther to go to erode this ability to the danger point. This was the first time I have ever heard of overcompensation used as strategy outside of Wall Street wage practices. If overcompensation is good enough for them, it's good enough for us!

Next up were a pair of presentations held in Wasilla, made possible by the Washington Chapter of the American Parkinson's Disease Association. A shout out to them, especially Evie, for going to the trouble of coming all this way and bringing such excellent speakers.

The first to talk was Doctor of Pharmacology Steve Setter. During a presentation enlivened by humor, Dr Setter left us with a number of excellent thoughts for managing medications. Among the tips:


Know your pharmacist The complexity of the Parkinson's family of disorders along with other problems you may have, for example abnormal blood pressure or heart problems means that you need someone on your team who is looking at what all your doctors are doing with all your medications. Where this is not possible, for instance when you must mail order your meds, it behooves you to study the reams of boring info in tiny type that comes with the pills. See "researcher" above.


Know the shape, color and size of your medications if something looks different, ask. Pharmacists do make mistakes sometimes.

With or without food? Efficacy of drugs and the ability to tolerate them are often pegged to this issue.

Always take pills with fluids make sure that pill goes where it can be readily absorbed instead of lodging in your throat.

Know the optimal timing of your doses here Dr. Setter offered an interesting tidbit: If you know that you are going to be stuck in a car or airplane and you don't want to be dyskinetic the whole time alter the timing of your dosage to allow for that.

Over the counter medications can have interactions with prescription medications. An example cited was Tylenol pm, which contains benedryl, this, when crossed with PD medications that make one sleepy can add up to an exaggerated snoozing effect.

Dr. Setter offered the National Parkinson's Foundation's drug handbook (Download it here) as an especially helpful resource.

One final point that Dr. Setter made was that we need to be careful about giving advice to other people with Parkinson's based on our experience. Because every case of PD is different, and because PD meds act differently in different people at different stages one person's experience may not be comparable to another person's.

Dr. Setter was followed by Dr. Kris Rhoades, a neuropsychologist practicing at Virginia Mason Hospital in Seattle. Dr Rhoades spoke on cognition, depression and sexual dysfunction in Parkinson's Disease. As usual this hard-working disease is doing its darndest to undermine us in multiple ways. In the area of cognition Parkinson's affects the frontal lobe of the brain, impairing what doctors call "executive function" and what you and I call multi-tasking, planning, speaking the ability to retrieve memories and the ability to adapt. With its habitual irony PD attacks the very areas we need to use in order to cope successfully with it.

So how do we work against this? Some Alzheimer's medications help, along with our old friend exercise and the practice of exposing oneself to new ideas and situations, fostering flexibility in our brains. Personally, trying to do all of the exercise and brain stimulating I can and hoping it takes a long time to catch up with me.

Dr. Rhoades then moved on to depression. We know it is common in Parkinson's disease, and that the lack of dopamine, which is one of the main feel-good chemicals in our brains is a major hallmark of Parkinson's Disease. So the nature of our disorder makes us easy targets for depression. Depression in Parkinson's is often characterized by slowness, impaired concentration, weight loss, sleep disruption, diminished appetite and decreased sexual desire. In my experience it is also marked particularly in men with denial. I asked Dr. Rhoades if he could suggest any strategies to break through to a depressed person and get them to deal with it. His Zen koan-like answer: "How many neuropsychologists does it take to change a light bulb? Only one, but the light bulb has to want to change".

On dealing with depression, Dr. Rhoades said that anti-depressants give us a window to deal with the problem, implying they are a temporary solution to the problem. Beyond advocating exercise, which my reading and personal experience confirm help quite a bit, I don't recall much that he offered to go beyond them. And if the depression is the result of some chemical imbalance triggered by our disease, why not continue to use them as more than a stop-gap?? Dr Rhoades, if you are reading this, I welcome comment.

From depression and dementia, it was on to sexual dysfunction. Dr. Rhoades took on some myths and barriers to understanding and coping with this problem. Among the myths: Older adults do not want sex, older adult sex will be dysfunctional, and that older adults cannot be treated for this problem. Not necessarily so, says Dr. Rhoades.

He went on to outline some special areas of difficulty for PD patients: Movement impairment, changed appearance, masked face, sleep disturbance, fatigue, and change in roles in the partnership involved. He also listed differences between the sexes when it comes to sex and PD. Men still become aroused, but then have erectile failure. Women are less easily aroused. Spot the PD irony here? Every muscle in your body becomes stiff except the one you want to become stiff. Parkinson's, you crazy jokester you!

What to do? Vow of celibacy, anyone? Me neither. That leaves us with the fall-backs we are all at least dimly aware of. For men, those pills which everybody is spamming you about constantly (talk to your doctor.) Oral estrogen, creams, lubricants and additional stimulation and foreplay for women. Above all Dr. Rhoades advocates talking with your partner. Communication you may have gone without in the past is now imperative. A good reason to consider speech therapy!

Dr. Rhoades asked that we recognize pragmatics, that we acknowledge emotional stress, consider demonstrating love in non-sexual ways and talk frankly and openly about sex with our partner.

That's all from this edition of on the job training here at Parkinson's University (P.U)
Let's conclude with the P.U. Anthem:


For Parkinson's we won't sit still,
Though long the climb and steep the hill
Until we've popped our final pill,
P.U. we'll keep learning.
Depressed and slow, dysfunctional too
Still we raise our glass to you
We'll kindle hope and rise anew.
And keep the home fires burning.


Is there a dry eye in the house?

February Meeting

(Above: Composite photo by Pam Dunlap-Shohl showing a slice of the panoramic view from our nifty new room.)

Hello friends,

The February meeting will be a highlight. We'll have a presentation from Dr. Suzanne Strisik on depression. The meeting will be held in our palatial new digs high atop the Anchorage Pioneer Home in bustling Anchortown. Mark your calendars for FEB 20, 3:30 p.m. in the West lounge of the Pioneer Home.

Be there or despair!

Pete