Tuesday, July 21, 2020

Let There be Light, of the Proper Intensity

Hello friends, we interrupt our normal harrangues about exercise as a way of coping with some significant PD symptoms to bring you some exciting news! There is an intervention for Parkinson's Disease under investigation which involves sitting down quietly for an hour. It is a form of light therapy for Parkinson's Disease, now moving to stage three trials. This represents a totally new avenue to approach PD, one that doesn't just give us yet another version of an existing  treatment.

The idea is to use exposure to light to better regulate our circadean rhythmns. What are circadian rhythms? According to the National institutes of health,

"Circadian rhythms are physical, mental, and behavioral changes that follow a daily cycle. They respond primarily to light and darkness in an organism's environment. Sleeping at night and being awake during the day is an example of a light-related circadian rhythm. Circadian rhythms are found in most living things, including animals, plants, and many tiny microbes. The study of circadian rhythms is called chronobiology."

In a completely unsurprising development, these cycles are messed up by Parkinson's Disease. The hope is that by using light to regulate the cyles to achieve a more normal flow, symptoms will be alleviated safely. There is evidence that this is what happened in a phase two trial of the light device.

One exciting development here is the device appeared to reduce non-motor symptoms. According to an article in Parkinson's News Today, "Patients given light therapy showed a significant reduction in non-motor symptoms (measured through Part 1 of the MDS-UPDRS), as well as a significant improvement in their quality of life and a tendency to reduce daytime sleepiness."

It makes sense to me that this would be a productive area for research. I noticed several years ago that the long hours of daylight of the Alaska Summer appeared to make me more sensitive to the levels of levedopa I was ingesting,  As the summer went by, I was experiencing signifcant increase in dyskinesia, and discovered that I could reduce my Sinemet dosage by roughly half, in fact I had to reduce it to get any drawing done.

One last thing, this is research that we can all volunteer to participate in, It will be conducted through telemedicine, which means you can participate from anywhere, even remote Alaska. You can find more info here.

 

Tuesday, July 7, 2020

Yet Another NEW POST Over at the Northwest Parkinson's Foundation

New Post: "Congratulations, survivor" can be read here. You may avoid reading it by not clicking on the link, it's entirely up to you!

Wednesday, June 3, 2020

Expendable, a New Post on the Northwest Parkinson's Foundation Community Blog

Hello Friends. I have a new post up  at the NWPF site. It's entitled "Expendable". It's about sacrificing those of us in the vulnerable category to the Corona virus to open up the economy. See the deal I'm willing to make as a human sacrifice here

Tuesday, May 5, 2020

In Praise of Fear, New Post at The Northweat Parkinson's Disease Foundation

Hey friends, here is my latest post for the NWPF. In Praise of Fear.  Fear is not something to be ashamed of if you have PD, it is a rational response. Of course if uncontrolled, fear can be disastrous,  but so can an excess of bravery. The trick is to deal with it in a way that helps you with your effort to cope with Parkinson's.

Tuesday, March 10, 2020

18 Years of Parkinson's Disease, Looking Back

Hey friends, ol' Parkie Pete the PD Pundit has just had a comic posted over at Health Union. It's my reflection on 18 years of Parkinson's Disease, and how much the PD landscape has changed. You can find it here. You may need to scroll up when you land on the page, but it's there. Festinate Forward! Peter

Thursday, December 12, 2019

Things to Avoid Saying to a Person With Parkinson's Disease



 (Written originally for The Northwest Parkinson's Foundation.)

What can I say? It’s a free country. You can declare, utter, intone or even verbalize whatever you like (almost). But if you want to spare your friend/acquaintance/loved one who has Parkinson's some silent tooth-gnashing, here are a few things to avoid saying to them.

1.) “Boo!” Those of us with Parkinson's are more easily startled than those of you without it. This is probably has to do with the autonomic nervous system, its connection to the pre-frontal fizgig and the hemispheric laterality of the whoopsy response in our lizard brain. Whatever. I just know that I am more susceptible to being startled than I was before Parkinson’s set in. So, as charming as the novelty of seeing a Parkinsperson jump may be, try not to startle them deliberately. They are anxious enough as it is.

2.) "Parkinsperson" I thought this word up myself to avoid the constant repetition of the phrase “People with Parkinson’s” or the use of the dreaded term “Parkie” when writing about Parkinson's. But “Parkinsperson” identifies the individual as primarily defined by their disease. Parkies hate that, and who can blame them? Furthermore, it’s just a plain ugly word. What was I thinking? My apologies.

3) “Parkie” Some love this word, some hate it. Those who hate it really loathe it. Rather than risk more tooth-gnashing, surely you can think up something better. (Note: “Parkie” is also an Alaska term used by indigenous people to refer to their Winter coats. There is nothing potentially or actually offensive about the use of the word in this context. Isn’t language fun?)

3.) "Hurry up!” It’s hard not to say this, I know. But slowness of movement is one of the cardinal symptoms of Parkinson’s. It more than goes with the territory, it IS the territory. The person you are urging to make haste is probably already hurrying, at least, for them. When I hurry is when I am most vulnerable to falls. So weigh your immediate desire to get going against the time a trip to the emergency room will cost you, not to mention the cost in actual money. If you find this annoying, try silently gnashing your teeth.

4.) “You’re looking good” I understand this is meant as a compliment, however, there is an unspoken thought that goes with it. That thought: you have a dread disease and should look like absolute crap. Well, give it time, and someday we’ll all look that way, In the meanwhile, consider a simple “How nice to see you.”

 5.) “If anyone can beat this disease, you can.” again, I understand this is meant well. But what are you asking of the person who is sick here? For thousands of years, millions of people have had Parkinson’s, and as far as I know, not one has “beaten” it yet. So you are asking the impossible of someone who is already struggling. Furthermore you are burdening them with the obligation not to let you down. Instead you are putting them on notice that they are somehow special and therefore duty-bound to rise like a phoenix from the ashes. Even further, what does it mean to “beat” Parkinson's? To be symptom-free forever? To live as long as you can as well as you can?  To be made whole in flesh and spirit? How do we keep score? And who is the score keeper?
To sum up, let’s construct a sentence using all our unfortunate words and phrases in one grandly offensive tongue stumble, as an example of what to avoid when chatting with a person who has this disease.  (Caution, to those of you who have Parkinson's, the following may be triggering.) Here goes…

“Boo!... Hey, you’re looking good! But you better hurry up, Parkie! If any parkinsperson can beat this disease, you can, so get going!”

If that sounds awkward to you, think how it sounds to a person with Parkinson’s.

Thursday, August 15, 2019

August Parkinson's Reminders for the Anchorage Area

With the regularity of the Moon circling the earth, the Sun rising and setting, the very stars in their steady courses, the third Saturday of the month is rolling our way. And that means it's time for our hardy band of northern Parkinspeople to meet! I will be handing off the talking stick to Jane Mara who has agreed to facilitate the meeting. So show up for something new this weekend at 3:30 on the fifth-floor Tundra Lounge of the Anchorage Pioneer home.

And another thing , we will also have a deluxe bonus August meeting with very special guest Jennifer Riedel, Associate Director for advancement at the MJ Fox Foundation for Parkinson's Research, Wednesday, August 21, 6:00 pm at the Pioneer home, up in the Tundra Lounge. Jennifer will be sharing the latest research updates from the Fox foundation and this promises to be a real barn-burner of a meeting. Don't miss it!

Furthermore... The September meeting will not take place in its usual form, Instead it will be pre-empted  and augmented by the Parkinson's Live Well, Alaska program, a full day of presentations from local, regional and national PD savants, experts and wisepeople.  It will EDUCATE, INSPIRE and EMPOWER you in your daily coping with PD.  It all happens Saturday, September 14, 10:30 am to 3:30 pm at the Anchorage Senior Center, 1300 East 19th Ave in Anchorage Pre-registration required. You may pre-register here  Or give them a phone call (206) 695-2905.  I will have brochures for the event at our upcoming meeting.

Festinate Forward,

Peter

Wednesday, July 31, 2019

Bonus Meeting of the Anchorage PD Support Group! Update from the MJ Fox Foundation

The Anchorage Parkinson’s Disease Support Group invites our members and care-partners, visitors and new friends who find themselves navigating Parkinson’s disease to join us on Wednesday August 21 from 6:00PM – 8:00PM for a special presentation. The presentation will be held in the Tundra Lounge (5th Floor) at the Anchorage Pioneer Homes located at 923 W 11th Ave Anchorage, AK 99501).

Associate Director, Jennifer Riedel, of The Michael J. Fox Foundation for Parkinson’s Research (MJFF) will present on the following topics:
  • an overview of MJFF’s mission;
  • an update on promising Parkinson's disease research including disease modifying and symptomatic treatments
  • the latest legislation that impacts the lives of people with Parkinson‘s;
  • and information on how to get involved with clinical research through Fox Trial Finder and Fox Insight.

The Michael J. Fox Foundation for Parkinson’s Research is dedicated to finding a cure for Parkinson's disease through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson's today. Since inception in 2000, 88 cents of every dollar spent by MJFF has gone straight to grants and initiatives to speed a cure for Parkinson's. To date, the Foundation has funded more than $900 million in research to bring an end to Parkinson's disease. For more information, visit www.michaeljfox.org.

Sunday, July 28, 2019

Wile E. Coyote, Spinoza, PD and Me. New Post over at the NWPF Community Blog






"The moment I realized there was going to be trouble, there was no time left to avoid it. I was rolling along at a respectable rate on a favorite part of a mid-town bike path, a bridge over a bright stream flowing through a lush greenbelt. The sun was out and the beta endorphins were flowing.

As I cruised across the bridge, my mind wandered. So did my bike." (Read the rest of this grisly tale here)