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.

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

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..."

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.

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.

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".

February Meeting

(Above: Composite photo by Pam Dunlap-Shohl showing a slice of the panoramic view from our nifty new room.)

Hello friends,

The February meeting will be a highlight. We'll have a presentation from Dr. Suzanne Strisik on depression. The meeting will be held in our palatial new digs high atop the Anchorage Pioneer Home in bustling Anchortown. Mark your calendars for FEB 20, 3:30 p.m. in the West lounge of the Pioneer Home.

Be there or despair!

Pete

Swanky New Meeting Place UPDATED WITH NEW MEETING TIME!

Here is some good news. We have a terrific new space to meet now that the Anchorage Senior Center can no longer be open weekends. At the suggestion of Betty Berry I contacted the Anchorage Pioneer Home. Their activities coordinator Bob Montague was extremely forthcoming in accommodating us, and showed me a room that is pleasant, sunny and has a sweeping view of the surrounding area from its 5th floor perch. It backs up to a kitchen we can use. There is ample parking on weekends and the parts of the building we will need are all easily accessible by foot or Wheelchair. And of course, there are a number of people with Parkinson's Disease who live on the premises. Did I mention there is no cost to our group?

We are booked in there for as far into the future as we want on the third Saturday of the month from 3:30-5:00 in the afternoon.

Here is a link to a map locating the Anchorage Pioneer Home

How to get to the meeting room: Go in the front doors and continue straight ahead to elevator. Take elevator to the 5th floor. On exiting the elevator make a left. Continue ahead until you reach the popcorn machine. Make a left at the popcorn machine and you're there!

Peter

Statin Schizophrenia (Updated 11-21-2010)

OK, I'm a pillhead, a bulwark of the vast international pharmaceutical conspiracy, er, industry. You got the pill? I got the ill. I take 3 kinds of pills for my Parkinson's Disease. Two of these I take every few hours. I also take a multi-vitamin, and a vitamin D supplement, and, what the heck, throw in some salmon-oil gels while you're at it. Even my dog takes a tranquilizer before a trip to the vet. It would be depressing, but I'm on a pill for that as well.

Still, when my wise old internist announced a year ago that he wanted to put me on something for my high level of "bad" cholesterol, I balked. He gravely showed me the lab report numbers that said "HEART ATTACK COMING" But the thought of more pills, pills, pills was just too much. He reluctantly agreed to let me try to cope with the problem by modifying my diet.

A year passed. Leaves turned to gold and fluttered to the ground, snow fell only to be pierced by the green shoots of Spring. Birds returned with their raucous calls, as buds swelled and then burst into leafy glory etc... etc... and with the same majestic inevitability, my bad cholesterol numbers got worse.

So I went back to my wise old Internist. While waiting for him in the examining room, I dimly remembered some controversy about Parkinson's and statins, the commonly prescribed remedy for evil cholesterol. I whipped out my cell phone and googled "statins" and "Parkinson's Disease" and was rewarded by the following: Statins+PD=BAD. But, what's this? I also got Specific Statin+PD= good.

The first article, from Science Daily in January, 2007 warns

"Researchers are sufficiently worried by new study results that they are planning clinical trials involving thousands of people to examine the possible link between Parkinson's disease and statins, the world biggest selling drugs, reports Patrick Walter in Chemistry & Industry."

While the second, from a July 2007 edition of the same online publication, heralds one particular statin as a significant hindrance to both Alzheimer's Disease and Parkinson's!

ScienceDaily (July 19, 2007) — Researchers from Boston University School of Medicine (BUSM) have found that the statin, simvastatin, reduces the incidence of Alzheimer's disease and Parkinson's disease by almost 50 percent. This is the first study to suggest that statins might reduce the incidence of Parkinson's disease.

For a brief moment I became more concerned about schizophrenia in science than the question of whether or not I should begin statins. I informed my wise old Internist of my findings, and he asked me where I came down on the issue, and what I wanted to do. Really what I wanted was for him to stop treating me like an intelligent adult and tell me what I wanted to do. After all, he is the one with a medical degree, and all I have is a smart phone. But this is the day of the empowered patient, and my responsibility to be the master of my fate and the captain of my pills was clear.

I opted for the simvastatin. I don't know if it helps with PD. I'm just hoping that if it actually prevents heart attacks, I'll live long enough to find out.


Post script: Here with an unusually well-informed view on the above question is a reply that appeared as an anonymous response the comments section. I am posting it here for people who do not read the comments. Thanks, anonymous,


I would have a DNA profiling done prior to taking a statin to make certain I do not possess either of the 2 SNPs discovered in the SLCO1B1 gene which encodes a transport protein responsible for moving statins into the liver for detoxification for elimnation. Some individuals with these SNPs have been found to have greatly increased plasma statin levels, toxic levels, in my opinion. Incredibly high levels of a fat soluble statin does not make for a healthy individual. Imagine severely depleted coQ10 production; severely depressed production of selnoproteins and thus glutathione reductase; severely impaired glycoprotein function; depressed cholesterol levels-how will neuronal and myelin cholesterol levels be maintained; depleted dolichol within the melanin of the substantia nigra (and what is the significance of this event?).Mutations in this gene are not rare, though many individuals develop such severe myopathies or myalgias that they stop the drug. I think for those who do not suffer the muscle myopathy problems,neurodegeneration may occur. my 2 cents worth of personal opinion

What It's Like to have Parkinson's Disease (Frustration, Fifth in a series.)

Parkinson's is shoelaces that won't tie, grocery store bags that won't open, limbs that won't respond to commands that they move. The symptoms come on slowly, so slowly that one is unaware that the problem lies within. Instead it seems the world itself is resisting you. Now, add complications to tasks that should be made simple, for instance, opening a bottle of pills. If you are not frustrated, you are not human.