Have I nagged you to exercise lately?

I have a game I like to play whenever I meet a neurologist. I always ask "What is the one thing you wish you could get patients with PD to do?" So far, they always answer "Exercise".

Sorry. I know you were hoping the answer was "Spend more time sorting socks" or "Work on completing your string collection" or even "Write essays about the sleep habits of the spiny anteater". Anything but exercise. Unfortunately none of these things have been shown to help those of us with Parkinson's Disease when studied under rigorous lab conditions.

Exercise is a different story. You don't believe me? Well check here, here, here, here, here, or here. You're convinced now, right? Good, don't forget to consult a doctor before you start.

But do start. Imagine the power in your grasp here. You can improve your ability to move. You can improve your clarity of thought. It's even strongly possible that you can modify the once inexorable path of PD progression. And most important, if enough of us will take up exercise and faithfully stick to it, doctors will have to come up with a different answer to my question.

OMG! Time for Another Meeting!

Hello friends,

Another month has stormed by like an express subway that doesn't stop at your station. That means it must be meeting time. We will have a guest speaker from the Alzheimer's organization here in town who will tell us about services that they can provide for anyone who has dementia, which of course includes a number of PD sufferers.

The Valiant BETTY BERRY has volunteered to come back with another concurrent session for care partners, so those of you who care for someone with Parkinson's will have a great opportunity to benefit from her experience and generosity.
It all happens at the Swank and sophisticated ANCHORAGE PIONEER HOME this Saturday the 17th of April 3:30 p.m. on the Fifth floor in the West lounge, overlooking scenic Cook Inlet and vibrant downtown Anchorage.

See you 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 (Undermedicated: Third in a series.)

Another up-to-the-minute glimpse into the lifestyle of tomorrow, living with the disease that's all the demographic rage: PARKINSON'S! Today's fab feature is the joys of being undermedicated.

DBS Stream of Consciousness (Updated)

1.) Peter leads his handlers in a chorus of "I like New York in June."

Photos by Pam Dunlap-Shohl © 2009

June 30th, 5:30 a.m. Concrete gray San Francisco sky. Off my meds, mince to curb. Cram into cab with my handlers, Pam, Yvonne, and Wiley. Cabbie talkative, asks if we saw the gay pride parade "All those hairy asses." Pam won't let his scorn go unchallenged, "To each his own, I say" she replies. Myself, I think the parade missed a big opportunity by not having people in fezzes driving tiny cars around, but found it on the whole to have the same level of gravitas one expects at any parade. And it was certainly a good call to leave the military gear home. Don't ask, don't tell. We arrive at the hospital atop the hill, report to adult surgery and in walks Irish Annie, all business and brogue, she takes our information and when we tell her why we're there and who will do the honors, she is pleased "Ahh, she says, "The wonderful Dr. Starr" which is as good a way as any to kick off brain surgery.


2.) Be prepared for lots of paperwork

Just a few more forms to fill out before the drilling begins... The wonderful Dr. Starr offers yet another piece of paper, says "This one is in case you have any moral objection to a blood transfusion, should you need one." I reply that I have a moral objection to NOT having one, should I need it. "That would be my position." says Dr. Starr. Then, just because everybody makes mistakes sometimes, he produces a sterile sharpie marker and inscribes an "X" on either side of my temple to remind him where the drill goes in.


3.) X marks the spot, except the real spot is hidden by my full, luxuriant hair. So in this case X is just a reminder that they are supposed to drill around here somewhere.

And now it's time to meet the "halo" a dense metal basket that looks like a relic of some medieval dungeon, except with Velcro straps. The Versed, or as the medical staff like to refer to it "The good stuff" hits and... do I care that the Iron Maiden is being screwed to my skull? No, I do not.



4.) Less scary than it looks, especially when you're doped to the gills on "The good stuff."

I also do not care that I miss the part where the drill chews through my skull.



5.) Less scary than it looks, especially if you don't look at it. (Picture by Monica Volz)

But as the lead nears the target portion of my brain they must wake me to gauge my response to stimulation. The doctors have a sort of map to guide them, a composite MRI and CT scan, but they are also listening for the sounds generated by this part of the brain to let them know they are in the right neighborhood.



6.) The lower half of the graph above represents the electrcal activity of a single neuron. Courtesy of UCSF

Curious, I listen too. Am somewhat disappointed that the sound is much like static on the radio. But maybe that sound is more than we know, flick on your radio and perhaps what you hear as static is really the firing of the neurons in the deep brain of God. Oh wow. Hey, this Versed IS good stuff... Now that I'm awake, Dr. Starr puts me through some simple tasks and manipulates my forearms and wrists with abrupt precise movements. The anesthesiologist asks how I am doing. I confess that my butt feels like it is on hour 15 of a 14 hour flight. The entire process is repeated for the right side of my brain then followed by a short set of tests to help Dr. Starr with some research he is working on, and then it's back to sleep.



7.) The most dramatic thing you will ever nap through.

I wake in my hospital room, Mary Kay, Dan and Steve are soon ushered in, my dinner is also ushered in, and I destroy it with gusto. Best damn penne I ever ate. I feel bad eating in front of visitors, but not bad enough to stop. In fact I'm so hungry, I ask for another round. My room is shared with an older woman with breathing difficulty. We are never introduced, but separated only by a curtain, and with our defenses down we become intimate with each other's pain. She is in for a long night, as the staff must insert a catheter, this seems to take hours. I feel sympathy as I am catheterized, too, and not looking forward to the thing coming out. At some point during the next few hours the powers that be decide to go beyond fiddling with the catheter and mysteriously replace the entire patient. What became of her I have no clue. The new guy is obviously familiar with hospital routines, seems to have breathing troubles as well. My nurse Raisa, is not surprised to find me ready to check out the second morning, dressed and eager to get back to my family.

Hey Alaska, The Parkinson's specialist will see you now

The wait is over! Alaskans with Parkinson's Disease can now arrange to be seen by a specialist in treatment of this complex condition.

Dr. Alec Glass will soon begin his quarterly visits to Anchorage to provide care to Alaskans who suffer from Parkinson's Disease. His first round here will be the weekend of the 22-24th of May.

Dr. Glass is a fellowship-trained specialist in movement disorders. He practices at the University of California, San Francisco, and with the VA in San Francisco. You can learn more about him here.

To make an appointment to see Dr. Glass, contact


Alaska Neurology Center

3841 Piper Street Suite T345

Anchorage AK 99508

907.565.6000 Phone

1.866.977.2562 Toll Free/Fax

Please help spread the word among people you know who could benefit from this opportunity to better manage the PD beast. This is an excellent chance to move toward better quality of life without having to pass through Seattle or Portland to get there.
Gargantuan thanks to all involved in making this happen, especially Joanne Power, and Dr. Glass.

Festinate forward!

Peter