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.”

17 Year Search for Credible Hope

My latest blog post for the Northwest Parkinson's Foundation is about credible hope. You can find it here or at least, I hope you can!

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.

Lifestyle Tool Kit for Parkinson's Disease. A Video from the Davis Phinney Foundation

Here is a video that gives excellent pointers on things you can do with diet, exercise etc. to manage your PD better. From the Davis Phinney Foundation:"Claire Henchcliffe, MD, Phil of Weill Cornell Medical Center in New York City gives viewers tips to build their own “Parkinson’s Lifestyle Toolkit,” including medication awareness, medical support, nutrition, exercise, emotional well being and complementary therapies. Dr. Henchcliffe discusses warning signs in each of these critical areas to living well with Parkinson’s and provides recommendations on how to effectively integrate them into daily life. Her prescription for taking action includes practical steps, designed to improve quality of life right now and make it last."

Vitamin X, The Third Great Discovery in Parkinson's Treatment in the Past Forty Years

(Adapted from a talk I gave recently to  our local PD support group)

Parkinson's Disease has been afflicting humanity for thousands of years. For most of that time,  not much could be done to alleviate the symptoms, much less halt the ravages of the disorder. In the past forty years or so, there have been three major developments that have changed the way patients experience symptoms of Parkinson’s.

The first discovery came in the mid 1960’s, researchers found the motor symptoms of PD could be alleviated through use of levodopa. These symptoms of Parkinson’s Disease stem from reduction of the ability of the brain to make dopamine, the chemical messenger that enables our brains to communicate with our muscles. When the body is supplied with levodopa, combined with carbidopa  to avoid nauseating patients, the brain can transmute the l-dopa chemically to dopamine, making up for the lost supply. This can mean nearly total control of symptoms, at first. (Sinemet is the medicine's commercial name)


The second great change in symptom management came with Deep Brain stimulation (DBS). This is a surgical procedure that can have dramatic results in patients who are “Good Candidates” (patients who respond well to l-dopa and have no significant cognitive impairments) DBS was approved as a treatment for PD by the FDA in 2002. The procedure is audacious and demanding, but the results can be impressive. Unfortunately, not all patients qualify to have the operation, and for reasons that are not understood, occasionally a good candidate will have bad results.

In fact, both these developments, impressive as they are in technical rigor and in results in terms of improved quality of life, have drawbacks. In the case of levedopa, as time goes on and patients lose more of their capacity to cope with the disease, they compensate by increasing their dosages. This leads to unwanted side effects that are as debilitating as the disease. Among these side-effects are Dyskinesia, excessive unwanted movement, and motor fluctuation, the "wearing off" of the medication that results in the unmasking of tremor, softness of speech, slowness and all the other motor symptoms that the medicine holds at bay.

Not to mention the that medication must be taken regularly throughout the day, at the correct intervals for meaningful relief. Life being what it is, schedules can get messed up.Which means that the patient gets messed up, too. In addition there are Parkinson’s symptoms that seem beyond the reach of levodopa, in particular the loss of sense of balance. Still, the discovery of levodopa as PD therapy has led to great increases in both quality of patients lives, as well as sheer life duration.

Like l-dopa DBS surgery can have great impact on a patient’s symptoms, but it comes with side effects and limitations as well. As with Levodopa, it seems unable to prevent falling. It has little effect on non-motor symptoms, like depression. And of course it IS brain surgery with all the attendant risks of bleeding, infection, etc. It is also blamed for some patients loss of ability to speak clearly, and in certain cases, for actually worsening balance. Also, again like l-dopa, DBS only treats symptoms without affecting the underlying disease.

There is a third exciting development in the treatment of Parkinson’s Disease that is just now coming into its own. It brings significant advantages and promise of hope to the table. It is relatively cheap and freely available. Furthermore, when used correctly, it is without nasty side effects. Almost more exciting, and unlike the first two developments, there is evidence that it is disease-modifying, not merely useful for coping with symptoms. It is wise to consult with your Doctor before you start this approach, but after the initial work is done, you are free to use the treatment as you see fit.

So what is this miraculous PD panacea, and how can you obtain it? It’s Vitamin X... exercise!

 Ten years ago, little was known, or, at least published, about the benefits that exercise can confer on PD patients. In fact, for awhile, the conventional wisdom was that exercise was not a good idea if you had PD. Times have changed.  Exercise is now seen as indispensable PD therapy. What do researchers say as to how to benefit from exercise? Well one, Dr. Jay Alberts (Check out this video, featuring his research) has found the performing “forced” exercise, over and above what you would normally put into a physical activity can enable patients to increase their score in Parkinson’s assessments by 30-35% over a period of a month! If one came up with a drug that did the same tomorrow, they'd be rich and celebrated the World over. It’s true that if patients did not continue their exercise regimes, they would lose the benefit over three weeks time. So what? If I skip taking pills for three hours, let alone weeks, I’m in a world of hurt.

One of the worst aspects of Parkinson’s is the loss of the ability to balance, and the consequent falls this brings on. In addition to being scary and painful in their own right, falls can result in drastic complications, such as broken bones, These can lead to even worse complications, such as infected bedsores, which can be fatal. Ten year ago when someone came to me and said “How can I cope with falling?” all I could do for them was to suggest ways to recover and to get up off the floor. Now we know that various forms of exercise, Yoga, Tai-Chi, and dance can help to recover and preserve a patient’s ability to balance.  And we are lucky enough in Anchorage to have both an instructor of dance for PD and another for Yoga for PD. Both have gotten special training in working with PD Patients and each give weekly classes in these fields.

Exercise may be the only way known to achieve the Holy Grail of Parkinson’s treatment: Disease modification. To slow or stop the progression of this disease has long been an unfulfilled goal of Parkinson’s research . CoQ10, Eldepryl and Azilect have all  been touted as having the ability to slow this disease. None has been proven to make a dramatic difference. According to the Michael J. Fox Foundation “While Teva (maker of Azilect) was praised by members of a US FDA advisory panel and regulators on 17 October for conducting a complex clinical trial aimed at demonstrating that its Parkinson's disease drug Azilect (rasagiline) may slow the progression of the disease, the committee unanimously said the study ultimately failed in providing substantial evidence to back up that claim.” What would such a claim mean if proven? Again, from the Fox Foundation: “Dr Russell Katz, director of the FDA's Division of Neurology Products, noted that US regulators have never approved a treatment for disease modification in any neuro-degenerative conditions. "The effect of disease progression is something that is tremendously important, both from a clinical point of view for patients, but also from a regulatory point of view," he said. "If you tell people in labeling that a drug has an effect on disease progression, you really want to be sure it has an effect on disease progression."If a drug is found to have an effect on disease progression, Dr Katz said it would "change dramatically, not only clinical practice, but controlled trials in the future.”

 Exercise is now seen as a likely way to reach this elusive goal. According to the National  Parkinson’s Foundation:

“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 intensely, 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.”

Furthermore there is a clear theory that  explains what exercise may do to foster neuroprotection, the guarding of nerve cells from harm. Exercise increases the level of neurotrophic chemicals in the brain, These are the chemicals that promote the growth of nerve cells. The more of the neurotophic chemicals available, the better the conditions for bolstering  your brain cells. It also appears that exercise allows the brain to use dopamine more efficiently. So you make the most of what you’ve got.

What is the best way to take advantage of this new knowledge of the benefits of exercise?  According to the NPF:

”The best way to achieve these benefits is to exercise on a consistent basis. People with Parkinson's enrolled in exercise programs with durations longer than six months, regardless of exercise intensity, have shown significant gains in functional balance and mobility as compared to programs of only two-week or ten-week durations. However, when it comes to exercise and PD, greater intensity equals greater benefits. Experts recommend that people with Parkinson's, particularly young onset or those in the early stages, exercise with intensity for as long as possible as often as possible.  Your doctor might recommend an hour a day three or four times a week, but most researchers think that the more you do, the more you benefit. Intense exercise is exercise that raises your heart rate and makes you breathe heavily.  Studies have focused on running and bicycle riding, but experts feel that other intense exercise should provide the same benefit. Regardless of your condition, you should always warm up and cool down properly, exercise in a way that is safe for you, and know your limits.  There are many support groups, therapists, and exercise programs who can help with PD-safe exercise and help you to set up your own program if that’s what works best for you.  Be sure to consult your physician.  If your physician is not a PD expert, you can call the NPF helpline (1-800-4PD-INFO) to help you to explain to your physician the importance of exercise so that you and your doctor can put together a plan that will work for you.”

Is exercise a magic bullet against PD? Lab experiments with Rats that were injected with a substance that induces PD-like symptoms, and then exercised showed a lower rate of symptoms than a group that did not have exercise. But the problem is that if exercise were an all-protective panacea against Parkinson’s Disease, how do we explain the fact Olympic Athlete Davis Phinney got the disease?  He was certainly exercising big-time before diagnosis. So, no. We haven’t got a magic bullet. But turn the question around. How bad off would Phinney be if he had NOT been training for the Olympics much of his life? We don’t have any way of  knowing. But the knowledge we do have suggests that his exercising was not a waste of time.

Of the three major developments in the world of Parkinson’s in the past 40 years, it’s hard to say which is the most significant. But there is clearly one which, in its ease of  access, low cost, return on investment, lack of dangerous or otherwise undesirable side effects, and promise of substantial outcomes is in a class by itself. The question for you, given the stakes and the state of the science is what are you waiting for? (h/t @ Dr. Dave Heydrick)

Can you Keep a Secret? It's Parkinson's Disease Awareness Month

Pssssst... keep it under your hat. Don't tell a soul. This is your-eyes-only stuff on a strictly need to know basis, and yes, I'll have to kill you after I tell you. Can you handle the truth? It is, believe it or not, Parkinson's Awareness Month.

Once again April, in all her cruelty, demands that an oblivious world divert its attention from the disaster in Japan, War #3 in Libya, and even the lovely locks of Justin Beiber to (ahem) us.

April is the time we are supposed to raise our soft slurred voices in a cry for attention. A cry to which the World will likely reply "What? Couldn't catch that. Come again?" And who can blame it?

With the thousands of worthy causes out there demanding attention through such tired devices as "awareness" months, how do we get the world to focus on our particular little tragedy? That is the question of the moment.

But is it the right question? Isn't a better question why should anyone care? Given all the other sad, desperate conditions and predicaments that humanity faces, what can and should we do to make it worth the World's time to devote its distracted mind and heart to us?

Let's begin convincing people PD matters by ditching Parkinson's Awareness Month. Reserving a month for PD awareness leaves eleven months for Parkinson's obliviousness. We need to let people know they should care about Parkinson's Disease year-round. How? For a start, if you are hiding your PD, come out of the closet and let people know. This is especially important for young-onset patients. I have met good doctors that couldn't believe I had PD because I'm "Too young". An invisible problem is not going to rise to the top of anyone's to-do list. You must allow people to see your predicament before they can feel compelled to confront it. If you're not part of the problem, you're not part of the solution.

So you boldly step out of the closet. That's a start. What next? You have to show you care. If you can't be bothered to resist Parkinson's Disease, why should anyone with a less obvious stake in the matter be bothered? If you need some ideas about how to do this, no worries, here are a few. Start a blog, volunteer as a PD research subject, join a support group, get involved in a fund raising event. With a little enterprise on your part every month will become Parkinson's awareness month. People will be eager to cure it just to make you go away.

Learn what you can do to take better care of yourself. Whether the Lord helps those that help themselves or not, I do not know. But I am convinced that people are more apt to help out when they see you are trying to make your situation better rather than shrugging your shoulders and waiting for the next blow. Get speech therapy, work those stiff and sore muscles with regular exercise. Eat right. Manage your medication well. Do your research and learn all you can about how you can function more effectively in spite of what this disease will do to drag you under.

Whew, that'll easily fill up a year. A person might be forgiven for wondering if there is no simpler way to inspire interest and compassion from a stressed out over-busy world. Actually there is. But it would be wrong to wish PD on Justin Bieber.

Me and Wii (Part One)

I'm old enough to remember when television was supposed to be bad for us. I'm almost old enough to forget this as well, but let's not dwell on that sad state of affairs. Instead, I want to dwell on a different sad state of affairs. Now where was I?... oh yes, TV... Nowadays we don't have mere television, we have interactive video gaming, which is supposed to help us parkies with balance and fitness. It's TV that, darn it, is good for you! Ever eager to mix the unmixable, in this instance fun, and Parkinson's Disease, I obtained a Wii and a balance board. I then plugged in, turned on, and prepared to enjoy a rollicking workout.

The Wii had other plans. It began by asking me a series of questions about my height, age, and weight. Then it asked me to step up on the balance board while it did a little calculating. That done, it proceeded to tell me I am 22 pounds overweight and 65 years old in Wii Years! I'm 52.

You know you are living in modern times when your possessions can insult you.

A bit nonplussed, I let it slide and prepared to take a simple balance test. I don't mean to brag but I think that my balance is pretty good, considering my circumstances. I felt confident about my performance on the test. My machine begged to differ "I guess balance is not your forté" the machine informed me, dripping cyber sarcasm all over my misguided little sense of adequacy. I had to check the game box and make sure I didn't have a copy of "Wii Insult Comic" but it assured me that I had "Wii Fit".

Then the machine turned all fake-concerned and asked me if I wanted to lose weight, and if so, how much and how fast. This led to protracted negotiations and much refinement of my button-pushing skills. Great way to lose weight, button pushing. Finally we arrived at mutually agreeable goals. I was left to reflect that I never got along with coaches well, and in that sense, virtual reality was eerily similar to real reality. The main difference was that instead of being abused by a hairy man with a huge beer gut and a Precambrian sense of humor, I was being abused by a virtual icon of a piece of plastic electronic equipment with no beer gut and no sense of humor. It was then I remembered my forté, and, coordinating my deft right arm with my exquisitely nimble 65- year-old hand, I turned the little SOB off.