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.”

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.

Denial on Trial, (Originally written for the Northwest Parkinson's Disease Foundation)

ICYMI here is a post from my series written for the NWPF (BTW, They are streaming their annual Hope conference this year, so you can see it on your computer! Interested? You may register here)

Denial on Trial

                  
By the time we reach adulthood, most of us have learned at least a smattering of discretion. We have our private thoughts, and recognize the wisdom of keeping them to ourselves. This helps us avoid scenes like the following...

Hey, you... Yes, carefree healthy guy, you. You can’t hear me? Well focus and listen up, ‘cause I know something you obviously don’t. Of course I’m shaking. Of course I’m slurring my words. I may lurch and even fall, but no, I’m not drunk. And besides, we’re not talking about me, we’re talking about you.

You think you’ll always have a steady hand and that resonant airhorn of a voice? you think you’ll always have the luxury of gliding across a room without fits and starts, no  hitch in your unconsciously proud stride?  You think walking is simple magic, of which you will always be the master? Maybe.

I wouldn’t bet on it.

You think you’ll always have your power of concentration? Your ability to slide easily between complicated tasks? Well concentrate on this. You may be right. But what if you’re wrong? And I’m here to tell you that people are wrong about this kind of thing all the time. Who for instance? Well, me. But this is about you, not me.

Here is what I’ll bet on.

I’ll bet that before you know it, it will be too late. That you, or a loved one, or a total stranger will make a bad decision at a critical moment that changes your life forever. Or that something out of anyone’s control will cross your stars. It may have already happened and you just haven’t heard. Yet. All it takes is a forgotten turn signal, a twist in a fall, an overlooked bite from an infected insect.

You know this, but you need a reminder. Something to make it real.  

People with Parkinson’s who refuse to acknowledge their disease are said to be in denial. We’re told helpfully we need to get through that, and move on to dealing with the disease. But what about all you other people out there who are borrowing time and only temporarily able? How deep is your denial about the vulnerability of your health?

So look at me. See this peck of pills I take every day just to approximate your supernatural ability to defy gravity and stand erect? See the time I spend wrestling with Newton’s laws, an object at rest, tending to remain at rest, while you go  jaywalking obliviously through the loopholes?

I don’t want pity, I’m doing alright, considering. And I’m not trying to tell you what to do, or eat, how much to exercise, how much to sleep, or that if you have your health you have everything. I’m not saying live life’s every minute to the fullest before it’s too late, that you don’t know what you’ve got until it’s gone, or any other bit of cliched good advice that we all know and have heard ad nauseum.

Like I said, (and yes, I “protest too much,”) it’s not about me. It’s about you. I just hope you learn from my experience, acknowledge the facts, appreciate what you have and and then live according to whatever seems to you best in light of reality. To live as though these things matter.

Why should I care if you realize that this is important? This Parkinson’s of mine must be good for something. If that thing is spurring you to realize how vulnerable we all are, that’s way better than nothing.

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.