Tuesday, March 30, 2010

A Great Big Vat of Molasses


(Above: A pot-boiling panel from the classic "Flash puts on his Socks" episode.)

NOW, for the FIRST TIME ANYWHERE...all TWELVE PULSE-POUNDING EPISODES of THE FAIRLY EXCITING ADVENTURES of FLASH MOLASSES are collected in ONE PLACE!!! Thrill to the adventures of THE CEMENT SUPER-HERO as he boldly MAKES HIS OWN BREAKFAST, wrestles with a BLADDER GONE BAD and outwits his nemesis, Parkinson's Disease at every turn. With cameo appearances by PAM DUNLAP-SHOHL, JON SCOTT, and VIENNA the WONDER WIENER-DOG.
Here's the link

Thursday, March 25, 2010

It was self defense



A man on the ground holds a sign declaring that he has Parkinson's. Able-bodied men, who tower over him, angrily mock his disability, Why do these healthy people waste their energy on someone who can obviously do them no harm?

Because they fear him. They see in his stricken body what likely will be their own fate. Sooner or later we are all going to lose the vigor of the young and the steady vitality of middle age. We will be either ruined by advancing years and their inevitable companion disease, or snatched away by sickness or mishap before we are ready. No one gets out of here alive and few get out gracefully.

This man on the ground is a reminder of that. These bullies want no reminder of human frailty, because they share it. They believe that by mocking him they can show how separate they are from him, how strong. But what they are separating themselves from is their own humanity.

Many things distinguish us from the animals. From our capacity (and, as Mark Twain noted, our need) to blush, to our appreciation of music. But nothing comes close to what living together and taking care of each other does to soften the blows of our uncaring Universe and mark us as unique. As a species we excel at taking care of each other. We are so good at taking care of ourselves, we even have time to make other species lives better. Ask your dog.

It is in coming together, in backing up one another, that we find our real strength. Even the bullies agree. Go back and look at the video. It takes a crowd of healthy people to deal with one man cut down by Parkinson's Disease

Friday, March 19, 2010

A Wild Ride to Defy Parkinson's Disease


Above: Parkie-with-a-purpose Doug Bahniuk plans to ride his bike from Anchorage to Fairbanks this summer



The problem that most of us who have Parkinson's disease share is an inability to initiate voluntary motion. That's where Doug Bahniuk, an Ohio engineer who was diagnosed with Pd over 5 years ago differs. Doug has such initiative where motion is concerned that he has crossed the State of Oregon three times by bicycle. Doug now plans to ride from Anchorage to Fairbanks, in spite of, and because of Parkinson's Disease.

Following is an email interview that Doug and I recently undertook, me with an earnest curiosity, Doug with a carefree insouciance.


Pete (earnestly) So Doug, tell us about your summer plans...

Doug (with Devil-may-care panache) My plan is to prove to the world and myself that Parkinson's Disease won't stop me from meeting life's challenges head on by riding my bike solo from Anchorage to Fairbanks. While I'm at it, maybe I'll tackle another life's goal -- to rule the world.

To do so, I'm going to first fly from Cleveland, Ohio to Anchorage. From Anchorage I'll ride my bicycle to Wasilla where I will confer with a certain world leader about my plan. From Wasilla, I'll ride to Willow Creek, gathering support along the way. By the time I reach McKinley, I expect a substantial following of hungry bears, if not people. I'll continue to McKinley Park, recruiting followers in the wilderness all along the way. By the time I get to Nenana, I'll be riding either a ground-swell of support, or still be on my bicycle. When I reach Fairbanks, crowds will welcome me as their new leader and sweep me into office, or under the rug. After that I'll ride a victory train back to Anchorage, basking in the glow from my minions. That's the plan, anyway, well at least the part about riding my bike.

Pete
Do you have much bike trekking experience?

Doug I've ridden across Oregon three times (Portland to the coast, down the coast, cross country to Crater Lake. From there to Boise Idaho.) After the third time I rode from Boise to Denver. Two years ago I rode from Denver to St. Louis, and flew from St. Louis to Cleveland (I rode from St Louis to Cleveland in 1975.) Then I rode from Cleveland to Boston. All the rides were solo.

Pete Why Alaska?

Doug Alaska is a beautiful state. The ride should be very challenging, because there's not much between Anchorage and Fairbanks. I'll have to be very self-sufficient. And how many people with Parkinson's have pulled this off? I'm the first that I know of.


Pete
Why solo?

Doug Well who's going to be crazy enough to go with me? Seriously, I enjoy riding by myself. I don't have to worry about anyone other than myself. I stop when and where I want and I ride at my own speed. And I enjoy my own company. I enjoy the freedom, being self-sufficient and the fact that people are impressed when I tell them I did it alone.

Pete What are your greatest concerns about the trip?

Doug Trucks and cars. I've been hit six times, with injuries ranging from bruises to a broken hip. I've been blown off my bike by truckers seeing how close they can get. Yes, I worry about the wildlife. I mean, a woman just got killed by wolves in Alaska, so who wouldn't worry? And you always hear stories about bears attacking campers. But it's the vehicles that pose the greatest danger.

Pete How long have you been diagnosed with PD?

Doug Somewhere between five and seven years. I purposely try to forget how long. Long enough to have real problems with coordination, stiffness, balance, and trembling. But I can deal with these things. They just make the ride interesting.

Pete What have you learned about PD and exercise?
When I ride, I feel free. I feel normal. I have fun. I can keep up with most guys my age (57) that don't have PD. I'm not sure there is a long term benefit of riding or not, but while I'm riding, I feel good. And that's good enough for me.

You can find out more about Doug, his plans, and how you can support Doug and his quest to inspire patients with Parkinson’s Disease and raise money for research by going to Doug's blog

From the Operating Theater to the Concert Hall



And now, playing for a select and very small audience, we bring you Roger Frisch, a concert master with the Minneapolis Orchestra playing his violin during Deep Brain Stimulation. DBS, here used to control Essential Tremor, is also used in Parkinson's Disease, often with dramatic results.

"What's weird about that?" you ask. The answer: This is the second TV report I have found of a musician having their ability restored by DBS in the presence of a news camera. The first post, about a man playing his banjo during his operation for Parkinson's can be found here along with a link to the report showing the banjo player during his operation. If they can find a bass player, they'll be able to form a band. Their instruments will be acoustic, but the players will be electric.

Thursday, March 11, 2010

Upcoming Meeting, March 20

Hello friends

Your support group will meet the 20th of March, 3:30 at the Anchorage Pioneer Home. ATTENDANCE WILL BE TAKEN, and absences and tardies will go down on your PERMANENT RECORD! OK, I'm bluffing, we don't call roll and don't have a clue what has become of our permanent record, let alone yours. But you still want to come to this meeting for two good reasons.

1. Veteran PWP Janet McVey, a retired dietitian who has had PD for over 25 years and is still coping with style and grace will give us a talk on PD and diet.

2. Master Care Partner Betty Berry will lead a separate session for those who care for a person with PD.

Oh, just remembered reason 3: Cookies.

See you there,

Peter

Sunday, March 7, 2010

What It's Like Having Parkinson's Disease, part 6 in a series

Another of the joys of Parkinson's Disesase: Losing your voice.
What?
I said "Another of the joys of Parkinson's Disease: Losing your voice".
What?
"ANOTHER OF THE JOYS OF PARKINSON'S..."

Friday, February 19, 2010

Masterparkie Theater : Strange Festination

Hello and welcome to Masterparkie Theater. I'm Peter Dunlap-Shohl, and I'm your host this evening. Tonight we have a work of taut storytelling garnished with crackling suspense. We find our hero suffers the opposite of the problem now bedeviling Toyota. Instead of unexpected forward surges, our boy comes to abrupt unexpected stops. Come with us now, as, thanks to the technologic magic of the sophisticated ParkieCam you watch through the eyes of a Parkinson's patient as he attempts a simple walk down a street in Santa Fe.

Tuesday, February 16, 2010

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.

Wednesday, February 10, 2010

A Benediction

This is one for the rest of you. Those who feel no sense of accomplishment or relief at your freshly buttoned shirt. Those who order soup without a tactical plan to ingest it. Those for whom keys find their way into locks and whom keyboards meekly obey. Those that rise still blurry-eyed from sleep, fumble for a light switch, ease on your slippers, and pad down a hall without hesitating, without false starts, without halting and without waiting until the mysterious force that holds you releases you, just as mysteriously.

This is for those that can smell breakfast cooking. Those that can crack an egg, and peel an orange. Those who idly throw a switch, walk the dog, phone a friend.

This is one for the rest of you. Those not awaiting the next blow. Those not wondering what new humiliation will be visited on them by a mindless yet fiendishly creative disease. Will it be a strand of drool that slides from your mouth? A slur in your speech? A stumble in your stride? A covert stare? An averted glance?

You are out there, are you not? Those who, at every slip of memory or momentary loss of balance, don't ask if this signals the start of some new phase of loss. Those who have no doubt about their sovereignty in the home of their own body. A body that doesn't clench unbidden, or beat restlessly of its own accord. A body that doesn't require a carefully sorted and gauged supply of pills in order to perform approximations of the simple tasks of life.

Are you listening, those for whom disease has not become habit?

This one is for you. This one is a fervent wish that you glory in the miracle of unconscious coordination that is the not-so-simple act of rising from a chair. That you revel in your ability to casually scribe a clear, spontaneous line. That you take joy in your certainty that your hand will obey when you command it to caress or create. That you thrill at the arc of your speech as it cuts a bright path to the ear of your listener. That you live a life informed by the realization that there is no "ordinary".