Wednesday, November 25, 2009

PD? Phone Home...

As a naturally paranoid person, I've long suspected that my beloved cell phone is frying my brain. Quite the opposite, says this uncharacteristically cheery post from Viartis. According to the brief story there,
"...long term use of mobile phones actually reduced rather than increased the likelihood of Parkinson's Disease and dementia by 30% to 40%. The researchers offer no reason why this might be."

The explanation? Who knows? The theory is that the effect results from low strength magnetic fields produced by cell phones, similar to those used in experimental treatments now underway. And why, you ask, should magnetic fields have such an effect? I have no clue. Ask a neurophysicist. Preferably via cell call.

What I do know is people with Parkinson's can now add heavy cell phone usage to smoking, drinking coffee, and eating dark chocolate to the list of vices we wish had indulged in more often. Its unjust, it's annoying, it's downright weird. But we can console ourselves with this: At least Hitler didn't have a cell phone.

Friday, November 20, 2009

Pete's Parkinson's Portraits: Adolph Hitler

Is it true we share our affliction with arguably the worst person ever? While nobody searched for or found conclusive proof in an autopsy, there is convincing evidence that the Nazi leader did have Parkinson's. Further, there is interesting speculation that the disease may have cost Germany the war.

In an article from, maintained by the National Institutes of Health, the authors write:

"It has been proved that Adolf Hitler suffered from idiopathic Parkinson's disease. No indication for postencephalitic parkinsonism was found in the clinical symptoms or the case history. Professor Max de Crinis established his diagnosis of Parkinson's disease in Hitler early in 1945 and informed the SS leadership, who decided to initiate treatment with a specially prepared 'antiparkinsonian mixture' to be administered by a physician."

As to how the disease affected Hitler, and hence the outcome of the war, the argument is outlined by the BBC as follows:

"The dictator suffered the disease, and the mental inflexibility associated with it could have been what led to his slow response to the D-Day landings in Normandy in 1944, researchers said at the International Congress on Parkinson's Disease in Vancouver.

Dr Tom Hutton, a neurologist who co-authored the study, said Hitler was suffering physical and mental symptoms of the disease, but his aides kept it secret.

He said that by the time of the Normandy landings, Hitler had suffered the disease for 10 years and would have had problems processing conflicting information - hence his initial refusal to allow Panzer divisions to move to the site of the invasion.

Hitler is said to have been convinced that the Allies would launch their attack at Calais."

Again we are forced to confront the ironies of Parkinson's Disease. Consider this, the stricken Fuhrer would not have survived the process of selection in which the weak and sick were culled from the death camps. With his symptoms aggravated by stress he would have advertised his own weakness and perished for it.

And this: For once, the illness does something good, helping to bring down a mass murderer and changing the course of history for the better. Yet one of the more acceptable traits of the disease, its slowness, left him in place long enough to ensure the massacre of millions of innocent Jews, Gypsies, homosexuals and others deemed subhuman or troublesome. Parkinson's Disease crept bit by bit through his system idly allowing Hitler to cause the deaths of millions of soldiers and civilians from all sides, and to leave Europe in ruins. Even when it does right, Parkinson's does it wrong.

Wednesday, November 18, 2009

The Hope Conference online

Here's a great resource for those of us unable to make it to this event put together by the most excellent Northwest Parkinson's Foundation. If as Emily Dickinson said "Hope is the thing with feathers", then the plumage of the NWPF is especially magnificent. Info below is from an email from the foundation.

Each of the presentations given at the 2009 HOPE Conference are now available online. We offer this service so that you may review or share the information offered at the conference. If you know someone that may also benefit from these presentations, please forward this on to them so that they too may enjoy the information provided.

You can go directly to the presentations by clicking here.

Don't forget to visit the newly offered online Wellness Center. There's many more tools and strategies to help improve one's self-care and quality of life. You can explore this new addition to our website by clicking here.

As always, if you have any questions at all concerning the conference, resources available to you, or ways we might help improve your quality of life, please don't hesitate to email us at or phone at 1-877-980-7500.

Thursday, November 12, 2009

Is this Thing on ? Test... Test...

Above, a rare photograph of The Ogre Who Says No caught in reflection on the back of the resophonic mandolin

Well the new brain hardware is getting road-tested this weekend when our band, Whiskey Jacks heads for Homer to play Alice's Champagne Palace. In an earlier post, I explained why it was difficult to tell if the device was actually working as I stumbled toward the right mix of stimulation to medication. Now it's a different story. The effect of the electric stimulation seems to have become more pronounced in the past three weeks making me wriggle with involuntary movement.

After experimenting with my meds again over the past few days it seems that I am about at the correct level to avoid frequent "off" periods, during which movement is minimal and difficult, but the trade-off is that I spend much of my on time uncomfortably dyskinetic, or "Joe Cocker" to you lay persons out there. During these dyskinetic "Ons", I tend to wave my arms, grimace and stagger, presenting the appearance of a tipsy street preacher. This is even less charming than it sounds. I've begun to think of myself as alternating between "Off" periods and "Oaf" periods.

More important, it makes me a bit erratic at time keeping when flailing away at the mandolin. The upshot of all this is that I am now actually dialing back the strength of the electric current that flows to my brain. (Man, I just reread that sentence, how 21st Century can you get? My mandolin is acoustic, but I'm electric!) Let's hope I can achieve a harmonic convergence between medication and stimulation by Saturday night.

In the past I would have been spared this precarious position by the Ogre Who Says No, my old alter ego who could always find a reason not to do something new or risky. The Ogre would have pointed out, for example that Peter can't play the mandolin. And I never would have learned. Thanks for nothing, Ogre.

It's imperative to say "Yes" sometimes. To live "Yes". If you spend too much time wth the Ogre, you'll get smothered by the musty blanket of boredom.

So I'm sending the Ogre an invitation to the performance, (not that he'll come) and betting that everything will be OK, or better. And if I'm wrong, well, I'd rather answer to my band mates than the ogre any day.

Monday, November 9, 2009

Early Warning: Meeting coming Nov. 21

Greetings Southcentral Parkinsonians, and all ships at sea. The teletype is clacking madly again with this hot news straight off the wire. There will be a meeting of the Anchorage Parkinson's Support Group Saturday, Nov. 21, at the hour of 1:00 p.m. in the swank and glittering Anchorage Senior Center. The creme de la creme of Alaska Parkinson's celebrities (that would be you) will gather to gleam in the light of early afternoon.

Our meeting will be graced by the presence of the Queen of Caregivers, Betty Berry, who will lead a separate session for care partners. This is an invaluable time for caregivers to share their burdens and insights with one another, you don't want to miss it!

Meanwhile the rest of us will either hear a talk by yours truly on depression and PD, or watch a video on managing the disease. A fine time will be had by all.

See you there,


Monday, November 2, 2009

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.