Showing posts with label Parkinson's research. Show all posts
Showing posts with label Parkinson's research. Show all posts

Wednesday, December 20, 2017

Closing the Year on a High Note. International Cooperation to Help People with PD

Okay, I admit the "International Cooperation" heralded in the clickbait hed above was just me and one French guy, but dagnabbit, we must start somewhere! It began when with a note from Monsieur Jean-Louis Dufloux seeking permission to use an old but redoubtable cartoon I drew (Yes, it's this one.) to illustrate a chapter of the manuscript he is finishing on Parkinson's Disease.

A bit of banter was followed by my sending a sample illustration based on his summary of a scene from his manuscript. The drawing elicited this request from my new BFF (Best French Friend) M. DuFloux:

"Hello Peter,

If possible for you, I would like to have four more drawings :

the use the repelling aspect of PD as a political weapon. My chapter illustrates the attack on Hill
ary Clinton by Donald Trump’s team during the last Presidential vote
the impact on well-being of l-Dopa at the beginning of the disease, the “honeymoon effect”
something about all the research made by teams in the world, the access to this content through internet, giving hope or disappointment
the impact on sleeping and the terrible wake up.

Tell me if you need more information.
Is it doable?
You can write dialogs, I will translate.
Thanks"
 
As it turned out, it was possible. The drawings appear below. 
 



Thursday, April 16, 2009

A Health Care Jeremiad (Second in a series)

Our health care system, particularly the way we fund research, reminds me of the old Tom Lehrer line about his doctor friend who specialized in "diseases of the rich". And if that joke is funny about just one doctor, think about how the hilarity compounds when it applies to an entire system.

Research, care, and resources directed at a particular disease are driven by concern. Concern is driven by awareness. Awareness is driven by the amount of energy and volume those affected by the problem can muster. Anybody see how the deck is stacked against Parkinson's sufferers here?

But just to make things more interesting, there is the effect of the celebrity wild card. If somebody famous and widely liked, an actor, an athlete, gets the disease... BING! BING! BING!... suddenly they're testifying before committees and Congress finds a way to wrap money for the problem into the next passing bill. Even better, a member of Congress should get sick. Then their peers can really relate, and they'll cry while they pass it. So you're set. For a year. Repeat until cured.

This is weird enough at the policy level but it gets downright warped at the level of the individual. This is the level where I'm shocked by decent caring people who say things like "It's lucky that Michael J Fox got PD. Now we get attention and funding." But why should that be shocking when I've privately thought the same thing?

Ignoble, Selfish. Obviously wrong on so many levels. And only human.

So must we add shame as another effect of Parkinson's Disease? Here's a way out. We should rephrase the thought to accurately express what we really mean. People renowned and obscure get Parkinson's all the time. None of us is happy about that. But not all of them react the same way. Some retreat, and lie low. Who can blame them? Others, like Fox, or Muhammad Ali, or thousands of lesser-known but equally courageous people with ravaging conditions go forth to meet their adversary with all the intelligence and energy they can muster. It's not lucky for the rest of us that they got our disease. It's lucky they are doing something about it.

And, not today, not tomorrow, but surely over time, their effort and courage will bear fruit. And that is something we should feel grateful for. That is something we may celebrate.

Wednesday, January 7, 2009

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".

Monday, September 8, 2008

Patience Pending


We people with Parkinson's are mavericks. We not only march to the beat of a different drummer, sometimes we don't march at all. In fact our theme song should be "I Ain't Marching Anymore" by Phil Ochs. Go with the flow? Not us. No flow, no go.


As members of a culture so manic that it has been forced to slice time into nanoseconds too small for any human to even perceive, we are the dissenting minority. While others multi-task all around us, texting their overfilled to-do lists to their partners while crashing their cars, we struggle to single-task, spending the morning buttoning our shirts or not tying our shoes.


This is role none of us are cut out for these days. Patience cannot be ordered over the Web and then delivered the next day in a brightly-colored Express envelope. Instead, we must learn it. And how do we do that?


Slowly.


Fortunately, we have many opportunities for practice. We spend countless minutes waiting for our meds to kick in. Dopamine brings a rush, but you can't rush dopamine.


Crossing a room can take on the quality of a major expedition, complete with danger. You may be in a hurry, but your feet are on their own schedule, and frankly, they're tired of being ordered around. They will get you there in their own sweet time. Push them too much, and you're going down hard, pal. They'll stick to the floor and you'll topple to their level with a thud that frightens everyone in the vicinity, with the exception of the mutinous extremities themselves. They're already safe on the floor. It won't be them that feels the pain. I don't know a single person with Parkinson's who has injured a foot in a fall.

So you learn not to rush your feet. They have the upper hand.

You want to practice patience? Try removing the cap from the bottle that holds the pills that enable you to take the caps off bottles. Hours of fun. The irony alone will amuse you for eons. Which is how long it will take to get to the pills.

The ultimate exercise for developing patience is the marathon wait for the cure. I remember a friend who bitterly observed that he had been assured that a cure was no more than a decade away. That decade has passed, and so has he. But bitterness sours the present for the sake of an uncertain future. So we need something to do instead of waiting. We have to work in the present to advance the progress toward the day when we can get back in the rat race with everyone else.

I'd love to just stop and smell the flowers, but ever the pranking poltergeist, Parkinson's even takes your sense of smell.

Sunday, July 6, 2008

Upcoming presentation: The next revoluton in therapy

Hello friends, fellow travelers, and those of you who pulled this page up by accident. Our pals The Washington Chapter of American Parkinson Disease Association are following up the well-received talk from Dr. Susie Ro with another promising program: "The next revolution in patient care."

Wednesday, July 9th, 2008 at Providence Hospital Room 2281 U-Tower, Providence Cancer Center Anchorage, Alaska 11am—1.30pm

SPEAKER: Dr Larry Elmer Movement Disorder Specialist Toledo. Ohio

Registration: 11:00 am

Reservations: evedavis@gmail.com or 425-443-8269

Lunch will be provided -

There is no charge. Thanks to Teva Neuroscience for Sponsoring this Event.

Our meeting for this month will be the annual picnic, which Lory has volunteered to host. More on that soon.

Also coming this month Dr. Alec Glass, a movement disorders specialist who will meet with us and share information on gene therapy and PD, and on depression as well. Information on time and location to follow.

Friday, February 1, 2008

Forbes Video of Former Intel Boss Andy Grove

Here is a link to video of the extremely wealthy (and dapper) person with Parkinson's, Andy Grove. Grove, who has put millions of dollars into PD research, advocates revamping the way research is done. To watch, click here
Thanks to APDSG member Jim Byrne for alerting me to this.