Me and Wii (part five: Flying disembodied Panda Heads)

Part freakin' FIVE? I agree, this is taking things a little far, and I promise to move on in the next post. Just hang in a bit longer while I wrap things up. The motivation for this series is serious. There have been many recent articles on how great the Wii is for people with Parkinson's Disease. Check out my favorite, courtesy of the British tab The Sun Banker stopped Parkinson's Disease by playing on Wii (thanks, Jo). This article touted the Wii's miraculous healing powers as being just short of those of the deceased Pope John Paul II, who is inching toward canonization thanks to his alleged miraculous cure of a nun supposed to have Parkinson's. No word yet whether there was a Wii involved.

Aside from the hype, why care about the Wii? First, many people with Parkinson's are unable or unwilling to leave the house for exercise. The Wii allows one to exercise at home, and in case you didn't hear me the first three (thousand) times, exercise is critical to managing PD. Second, one of the categories of skill the Wii tries to work is balance. Balance is a big area of concern to those of us who have PD. It is also one of the more intractable sides of the disorder. When I ask experts about what we can do maintain balance, there is little they can offer. The most practical advice came from a neurologist who advised honing your balance skills before falling becomes a problem. His idea is that if you "overcompensate" up front in the balance area you will have a longer glide-path down than if you neglect these skills before they are seriously menaced by PD.

This leads me to my two questions about the Wii. The first question: Is it interesting enough to keep a person exercising at home? The second: Can the Wii fortify balance in PD patients significantly over time? Alas, the answer to both these questions as tested unscientifically by one person with a huge stake in the answer will not be conclusive. One person is a pitifully small study sample and there are no control subjects. But with Parkinson's so much that is unknown that those of us afflicted must play our hunches as much as we responsibly can. With that in mind, this series will continue. But not until I get a significant amount of time under my belt with the thing so that I can render, perhaps, a little judgment on those questions.

In the space of a month, what have I learned about the Wii? There are a great variety of activities. This bodes well for prospects of continuing to exercise without being derailed by boredom. The experience can have a striking resemblance to reality. Ironically this is especially vivid when something surreal is happening, like getting struck in the face by a flying, disembodied Panda head. And one can genuinely work up a real sweat exercising with imaginary companions. There are certainly aspects of the Wii that are off-putting. Call me oversensitive, but I find garish color and cloying graphics well, garish and cloying. But so far, on balance the machine is ambitious and successful as one part of my exercise routine.

Teleheath Conference: That's Entertainment!

A band of die-hard Parkinson's information fanatics were treated to a display of fact-packed, well-thought out answers to questions from around the Northwest fielded by Spokane doctor David Greely. The Q&A was the centerpiece at yesterday's telehealth symposium. The symposium is a monthly interactive broadcast hosted in Anchorage by Providence Hospital. The supporting cast, in the form of small gatherings of attendees from Moses Lake to far-flung Anchorage asked thoughtful questions, and provided a certain amount of sympathetic comic relief as we watched one another struggle with technology using our PD-impaired bodies. (Extra points for the drama provided by the solitary elderly lady who spent several minutes under the table on camera out there somewhere. It was a relief to all of us when you reappeared in your seat and returned to noisily scratching your pencil on what I sure hope was paper.)

While a few questions may have vanished into the haze of the technological Bermuda Triangle, some significant points emerged that were well worth the time and effort of attending. Among the most compelling for me:


Muscle Cramps: can be treated by proper hydration, metabolic balance and addressing sleep problems, Which is, duh, the way you would treat them in a patient without PD. Sometimes we're not so special.


Eating and Pills: According to Dr. Greely, nine out of ten people with Parkinson's do not find any difficulty with this. For those that do, he still recommends taking your meds with a small bit of cracker or other non-meat to cue your digestive process to go into action. A pill is not usually enough in itself (unless you are taking some mighty big pills, Chester) to prompt the stomach to empty and push your medicine down the line to your intestines where it can be absorbed into your blood.

Stem Cells: Two thoughts here, relief from this direction is years down the road if it is to come at all, and the problem in the technology is not installing the cells, it's regulating them so that they produce the proper amount of dopamine in the brain. Dr. Greely likened it to the famous "Sorcerer's Apprentice" scene from the Disney Movie Fantasia. First you have one broom, then two, then four, then eight, then chaos.

Exercise I see you rolling your eyes out there. At least that's one part of you that's moving. I know that I harp on this subject ad nauseum. But Dr. Greely made a new point that rang true for me the second he said it. If you exercise, you will get better care from your doctor, from your caregiver and anyone else in your network of care, because you will send the message that you are trying. It doesn't have to be dramatic, start with what you can do and work up. But show those who work to keep you going that you are willing to do your part. They'll love you all the more for it.

Exercise, Wii Not?

So you hate exercise more than you hate Parkinson's Disease? You must really hate exercise. I could cite chapter and verse about why you should love it, or, failing love, at least have a tawdry, cheap affair with it. But who am I to browbeat you into doing something you dislike? Over at Parkinson's Disease Exercise ,there's a nifty report about using video games to make exercise *GASP!* enjoyable.

According to their post

"... researchers from the Medical College of Georgia (MCG) showed how just four weeks of play exacted marked improvements in patients suffering from Parkinson’s at varying degrees of severity. Using games that require finesse in bilateral movement, eye-hand coordination, and figure-ground relationship is an ideal way to help a person afflicted with a disease that impairs motor skills. Playing rounds of Wii tennis, bowling, and boxing three times a week for a month was all the longer it took to see changes."

Although I am a mild-mannered, gentle soul, I am surprisingly attracted to the idea of Wii boxing. I see myself in the role of Joe Louis, (there is only one Ali) and Parkinson's in the role of my hapless opponent.

It's round four. Adrenalin is pumping. My opponent senses that he has been overconfident. I jab a right to the midriff, an uppercut to the jaw. A little fancy festination footwork sets up a roundhouse swing... and a sudden shower of sweat explodes from the face of the PD Palooka as my glove lands a shattering clout to his nose. Huffing like a hyperventilating rhino he sways. His eyes fill with shock, confusion and impotent rage. He totters and plunges face-down to the mat with a wet smack that reverberates above the roar of the hysterical crowd. Light bulbs flash to the cadence of the ref counting off the ritual certification of a knockout. I lean over my stricken opponent, smile, and say "Are we still on for tennis tomorrow?"

The beauty here is how fantasy feeds back in a positive way to reality. An act of imagination leads to better management of The Beast. And at the very least, we can now go down swinging.

Paths to meaning, salvaging quality of life with PD

Parkinson's Disease is no walk in the park. Unless your park is home to a mysterious debilitating assailant who steals up to you and attempts to slowly rob you of your life.

Diagnosis is devastating to the person getting the verdict. The words "Disease" "progressive" and "incurable" are toxic enough when used together to render the gentlest, most well-meaning words of comfort hollow-sounding. Following my diagnosis, I appreciated words of comfort and predictions of spiritual growth as well-meaning administrations of an emotional placebo. A sugar pill offered to fend off painful reality.

The pain of Parkinson's is real. There is physical pain and fatigue that arise from involuntary muscle contraction and stiffness. There is the embarrassment of loss of control of your body. Tremor and drooling are not the skills one cultivates to become one of the glitterati. Slurring of speech, falling and sexual dysfunction? Those amount to many of the downsides of being drunk with none of the upsides. At least drunkenness wears off after a time.

There is financial pain. The meds are not cheap. And if you're lucky enough to have decent insurance where you work, guess what. Parkinson's is likely to take your job, too. The tentative financial security that most of us live with, or are trying to establish can go *poof* with Parkinson's.

It makes a person want to scream. Oh, sorry, more bad news, your voice also goes. Tell you what. Instead of screaming, just whisper loudly. What's that you say? Come again? Oh. Whispering isn't a satisfying substitute for screaming? Not for me either. The line forms here for a literal life of quiet desperation.

I could go on, but the picture should be clear. What we have here is a one-way ticket to the sewer. The sad fact is that this is so clear that a recent study found a person with Parkinson's Disease is five times more likely to commit suicide than a person without. Unsurprising. I considered killing myself when I first found out that I was heir to all that Parkinson's had to offer.

It would have been a monumental mistake. If you're a little lucky, if you're willing and able to junk what you can no longer carry, if you're willing to take new paths to meaning, you'll be surprised at what you can salvage of life. And at what you might find that you were unable to see before.

How does one live with, much less claim acceptable quality of life in the face of the Parkinson's parade of horribles? From my experience, I found a long list of things. Here are some that are critical. This list should be read with the understanding that it is only made possible by all that others have done to advance the treatment of PD, and the hope of future advances.

First, there are worse things than simple PD. Parkinson's is slow, and furthermore with modern medications and surgery the worst effects can be held at bay for an indefinite time, certainly a long one. There are forms of "Atypical Parkinsonism" more pitiless than normal Parkinsons that do not respond to present medications and bring on helplessness and dementia with a ferocity that is as frightening as it is senseless. (to see the blog of one man's courageous journey into this dark territory, look here)

We've all lost friends and loved ones to quicker killers like cancer. In the years since I've been diagnosed I've seen the sun rise over 2000 times. I've watched my son grow into promising manhood. I've shared love, music and travel with my wife. This is certainly better than not having this span of time. Yes Parkinson's will take it all from you, but there is a certain satisfaction in making the bastard work for it.

Second, if you're depressed (and if you're thinking of killing yourself, you are depressed) get help. You're not alone. Nearly half of people with PD are suffering depression. This is an area in which pride can become a stumbling block.It's hard to admit that you are not in charge of your emotions. Cut yourself some slack, you've got Parkinson's Disease. Depression is part of the beast. You want to resist the beast. The pills certainly help me.

Third, exercise. This is worth a whole post in itself. I've even written such a post, several in fact, here, here, and here, for example.

Fourth, Don't stop doing things you enjoy. I still ride my bike, not as aggressively as I used to, but still with enjoyment. I still make music and draw, in some ways better and in other ways worse than I used to. I still bake, read, enjoy movies. No reason you can't too.

Fifth, get involved with your support group. Life needs meaning, especially when it feels damaged. You are uniquely qualified to benefit others who share your plight. You are a Parkinson's Disease expert. In helping others you will help yourself. I have tested this theory and am surprised at how well it works. You'll get tired and exasperated too, but these are signs of life.

Sixth, take care of your care partner if you have one. They deserve it. And more important, they need it. Gestures of affection and help around the house may seem like small things, but anyone who knows even a little of what you are going through will appreciate that you are working on a different scale.

Seventh, cultivate hope. Ask anybody who has been around this disease and they'll tell you that the last twenty years have seen a tremendous rise in the understanding and care of those with Parkinson's. We're in a position now to see the day when Parkinson's, if not cured, can at least be treated as something to manange, instead of something merely to be endured. And a cure remains a tantalizing possibility that will become reality someday.

Eighth: Keep your sense of humor. This is what it's for. There's nothing funny about someone with no problems, unless you mean "funny strange". But Parkinson's? That's a hoot! The slapstick alone around my house is at least Three Stooges quality, and did I ever tell you about Pam's idea for the Parkinson's Bobble-Head Doll?

That's my list. It works for me at least. Does it amount to nothing more than a complex version of the Placebo Effect? It might. But a placebo that lasts this long this effectively is better than most medicines.

Sink Your Teeth Into Parkinson's Disease

My friend Dave, a neurologist with Parkinson's Disease, is always on the lookout for ways the PD populace at large can manage their disease better. One way he thinks that we can take some of the teeth out of the beast is to eat more healthily. (Dave is also a great believer in exercise. I get the impression sometimes that he thinks we should exercise while eating. Have you exercised today? Maybe you should stop reading this and do a few laps around the block.)

Bearing in mind such processes as oxidation and cell death, he went looking for foods that would counter these and other factors that contribute to Parkinson's progression. He found that the best way for people with Parkinson's Disease to eat is to follow the Mediterranean Diet. He just sent me a link to a updated version of the Mediterranean Food Pyramid, which you can find here.

Bon Appétit!

Science catching up to the Spandex Angel

Flashback: When I was first diagnosed with Parkinson's Disease, I had an encounter with the Spandex Angel. The angel appeared before me, resplendent in raiment of finest Spandex, vibrant with hues of a vividness not found in nature. The angel was both buff and ripped. Lo, its abs were like unto six packs, and its buns were of steel. And I was sore afraid. And stress did cause my Parkinson's symptoms to wax, and I did tremor with a vengeance. And the angel spake unto me, saying "Fear not, for though thou walk in the valley of PD, thou art not entirely helpless. Indeed thou hast a choice: Sit like unto a lump, inert and pathetic, and let this disease carry you down in an ever steepening spiral, or fight back against your insidious foe with exercise. This is thy choice: Move it or lose it!" Thus spake the Spandex Angel.

The wisdom of this apparition has proved reliable, and almost prophetic over time. While the angel offered no scientific proof of its message, much promising evidence of the benefit of exercise regularly crops up in new Parkinson's research. Here is a link to a report from ABC on the benefit of "forced exercise". What is "forced exercise"? Essentially it means pushing yourself to exercise at a sustained level that is higher than you would ordinarily maintain. In this case, pedaling a bike at a higher rate than the subject ordinarily would pedal. The video with the report has some spectacular footage of my friend Dr. Dave Heydrick, a neurologist with Parkinson's Disease. The video shows Dave completely off meds and with his Deep Brain Stimulator turned off before and after a vigorous ride on a tandem bike. In the before footage, his hand shakes like an aspen leaf in the wind. In the after footage, the tremor is undetectable. Check it out, then hit the gym (After consulting your doctor about what kind of exercise routine is right for you.)

New Study on Deep Brain Stimulation finds big improvement and some risk

Here is the essence of a new study on DBS just released:

ScienceDaily (Jan. 6, 2009) — Patients with advanced Parkinson disease (PD) who received deep brain stimulation treatment had more improvement in movement skills and quality of life after six months than patients who received other medical therapy, but also had a higher risk of a serious adverse events, according to a new study. (To read the entire story, look here)

This was brought to my attention by Roberta Greenberg, who is part of a DBS team in Southern California. I want to share a comment from her about the results:

"What a stunning statistic….71% improvement in motor symptoms and QOL for DBS patients vs. 32% for medical therapy patients. Those of us on the DBS side have been trying to tell the medical community this for the past decade, but have had no verifiable, quantifiable data to back up these claims….just our anecdotal observations of our own patient populations. But now….the data has arrived. WooHoo!!

The risk profile in the study is much higher than what I’ve seen. I think that’s probably because the study started in 2002 and surgical techniques were much more crude then. In my experience, the incidence of infection, bleeds, etc has been less than 2%. I think that’s the norm now. We’re so much better at it now than we were back in 2002/2003. The dark ages of DBS. I wish they had chronologically compared complications in the study…but like I said, I’m grateful that they finally got the darn thing published!"

One unmentioned benefit: After the procedure, friends will call you "Cyber Boy".

The best advice you'll ever ignore

If you could ask a smart, well-trained Parkinson's Disease specialist one question, What would it be? I was in a position to do that recently thanks to my friend Dr. Mary DeMers, who arranged for Pam and me to attend a talk from Dr. Stewart Isaacson, Director of a movement disorders clinic in Boca Raton. Dr. Isaacson was in town to educate the local medical community about developments in Parkinson's care.

As the designated Parkie, I wondered how to get the most bang for my question buck. I wanted something simple and powerful that I could take back to my support group. So I asked something along the lines of: "What is the one thing that your patients could do to cope better with PD that they don't do?"

Without hesitation, the doctor shot back an answer. I expected a reply that might have something to do with managing our pills, or informing ourselves about our disease. Nope. His reply was one word.

What he said was...

(Are you ready?)

What he said was....

(Got a pencil? you may want to write this down!)

What he said was...

(and I quote)

What he said was...

(WARNING: You're not going to like this.)

What he said was....

(OK, here it is.)

What he said was: "Exercise."

Motion Denied!

Denial. That's a word that sums this freaking disease up. Speak? Denied. Nod? Denied. Smile? Walk? Run? Denied.

Michael Kinsley, PPWP(Pundit Person with Parkinson's) wrote a column for Time in 2001 explaining his choice then of denial as a strategy. Here is a sample:

"When I got the diagnosis eight years ago, I chose denial. If ever you're entitled to be selfish, I thought (and still think), this is it. So I see a good doctor, take my pills most of the time and go about my business. I couldn't tell you some of the most basic things about Parkinson's and how it works... If you fool yourself skillfully enough, you can banish thoughts of the disease but retain a liberating sense of urgency. It's like having a Get Out of Jail Free card from the prison of delayed gratification." Look here for his entire article.

The argument is creative, humane, beguiling, and wrong. Outdated may be a kinder way to put it. Consider this: It is now clear that there is a long latency period, likely over a decade, during which quiet damage occurs. Researchers believe that somewhere between 50-80 per cent of dopamine generating cells in the substantia nigra are kaput before symptoms emerge. So you've already had your denial period before you even realize there is a problem.

So go straight to panic, anger, and suffering.

Kidding! Kidding! Here is the good news. There is growing evidence that we can influence the course of the disease by means within our power. Exercise has some serious anti-PD mojo, Reducing stress and following the Mediterranean diet are looking promising. Denial will delay serious efforts on your part to act in ways that can raise and extend your quality of life.

Denial (and fear) can also make you slow to join a support group. This is a mistake. People at your local support group are PD experts in ways that the best doctor just doesn't have the experience to understand. And there is nothing they would rather do than share what they know with you,

Get over denial. You owe it to yourself and those that care about you. If you can buy some quality time by paying attention and taking care of your body, it's time earned. It may be uninspiring, but nobody lies on their deathbed thinking "If only I'd eaten less broccoli and not done so much exercise."

You can do more than you think you can

ABOVE: Homage to Sylvain Chomet

Alzheimer's is the forgetting disease, but there is something that Parkinson's keeps making me lose track of: The fact that I don't have to quit doing what I enjoy because of PD. It's true that lots of my old skills don't measure up to their former levels, But as G.K Chesterton said, "Anything worth doing is worth doing badly." This was a defense of amateurism, but by all that is shaky, it also applies to living with PD.

I love riding my bike, I used to do a regular 22 mile round trip commute on our wonderful network of Anchorage bike trails. When I was diagnosed with Parkinson's,I was especially glum about the prospect of losing my ability to balance. No balance, no bike. I kept at it for awhile, then had to sit out most of a rainy season. When the next season rolled around I talked myself into the idea that I couldn't ride anymore.

I was working at home one day a little while after I reached this dispiriting conclusion. My son had driven to school and Pam had taken the Jeep to work. The phone rang, and when I picked up, I was told by the head of security at my son's high school that we had "A Situation" with his car. She explained that a roving security guard had peered into our Subaru and spotted a weapon. Said guard had the car staked out and could not leave until I dealt with the situation.

Calling me to let the guard return to "roving" mode was actually plan "B". The original idea was to jerk my son out of the middle of his AP economics test and have him retrieve the forbidden implement of destruction. Sanity prevailed, in the form of an alert assistant principal who knew that this kid would not be a threat to the school if he had a bazooka in the car. (Come to think of it, the car itself was a bigger threat, but he can explain that to you himself here)

Which was how I ended up telling an extremely unhappy head of security that, having no car, I would walk right up and take care of things, but since I had Parkinson's Disease, it would be about 45 minutes. This naturally left her delirious with happiness. At least I think it was happiness.

I trudged into the gloom of the garage to put on my shoes and the dull gleam of the gold paint on a friend's road bike caught my eye. It seemed worth a shot. It was.

I rode uphill all the way to the school and confiscated the weapon. I know you've been wondering just what it was. Machete? Switchblade? Gravity knife? Nope. It was a tiny folding saw with a 6-inch blade and a bright yellow handle that my dad had given us in case we broke down in the middle of a forest and had to hack it down to get back to civilization, or, if we were feeling truly ambitious, use it to start a whole new civilization. Which seems like a better idea all the time.

My job done, I signed a few autographs kissed a few babies, rescued a treed cat and rode home, delirious with happiness. I was back on a bike.

The Spandex Angel

I was vague about what lay in store after I got my diagnosis of Parkinson's disease in early January, 2002. But I knew it was bad. Preliminary forays to doctors and on the Web were daunting. I could look forward to inexorable progression of a creeping paralysis of voluntary movement. The loss of the ability to walk, to speak, to draw. A disease treatable with medicines that work for awhile, and eventually bring on side effects as difficult as the illness. This is what I was told was coming.

But the last thing I expected was the visitation of the Spandex Angel. After decades of struggling with God, I'm a religious skeptic. So I was taken utterly by surprise when a voice that spoke without words but with unmistakable intent and intensity came to me, and said "You have to exercise. If you don't, your downward spiral will be even steeper and more drastic."

As it turned out, the angel knew whereof it spoke. As I poured on the exercise I noticed temporary improvement in my symptoms. And there are a growing number of exciting studies like those done by Dr. Jay Alberts of the Cleveland Clinic that show definite symptomatic relief after intense exercise. Here's an excerpt from the clinic's web site:

"Dr. Jay Alberts, a neuroscientist at the Cleveland Clinic in Ohio, says in the past, exercise hasn't really helped patients. But by pushing them out of their comfort zone and forcing them to pedal much faster than they would normally, symptoms can improve more than they do from drugs.

'After eight weeks of exercise, symptoms have improved 30 to 35 percent for patients, which is a pretty dramatic improvement,' Alberts explained."

What's more, there are other studies that show possible neuroprotective effects. And exercise is a proven mood elevator. That's significant for those of us who have PD, which is often accompanied by depression.

Plus exercise is cheap, rarely results in an overdose and doesn't have to be imported from Canada. And no forms to fill out or file. One note: It is wise to consult your doctor before ramping up a serious exercise regime.

But take it from me, take it from Dr. Alberts, or take it from the Spandex Angel, "YOU GOT TO MOVE!"