Thursday, February 26, 2015

"My Degeneration" a Memoir About Living With Young-Onset Parkinson's Disease

After four years of wandering in the desert, burnt by the Sun, frozen by night, chapped from the wind, infested with sand flies, dazed with heatstroke, faint with hunger, dejected, rejected, demoralized, but nevertheless, oddly optimistic, I seem to have landed a publisher for my graphic-novel style account of my confrontation with young-onset Parkinson's Disease.

The hope is that many who would be intimidated or otherwise disinclined to learn about Parkinson's will find this an alternate way into this complex and destructive disease. I especially wish this to be a comfort to the newly diagnosed, something that can offer credible hope. The initial manuscript has undergone massive renovation to fit comfortably in a series of books that Penn State Press is undertaking on medical comics, created by patients, doctors, nurses etc. on the sensible theory that comics offer a powerful lens to examine the relationships between doctors, patients, disease and how it all plays out in the larger context of community and society.

The plan is to bring out the book, entitled "My Degeneration", this coming fall. Here are a couple of pages. The first is from a section on Parkinson's terminology, the second is from a description of Deep Brain Stimulation, a surgical intervention for Parkinson's Disease as well as several other neurological disorders.

Saturday, February 14, 2015

Parkinsonian Facial Masking Jumps the Language Barrier

Many years ago, I drew this cartoon

Over the years I have had many requests to reprint, or repost this drawing, which I am usually happy to grant (yes it's a power trip.)  And I appreciate the effort these people go through to track down an obscure cartoonist who lives far, far away. But I have a new BFF, Leszek Dobrowolski from Poland. Leszek not only tracked me down from another hemisphere, but across a formidable language barrier as well. In fluent English, Leszek graciously asked permission to reprint a Polish-language version of the above cartoon (The translation appears below). Parkinson's Disease, uniting the World.

Sunday, January 11, 2015

Parkison's events for January in Southcentral Alaska

I know that you all have busy schedules for January filled with to-do's like "Avoid falling on slippery streets" and "practice my speech therapy homework" and "exercise like a possessed person", but I thought it would be good to increase your stress levels by noting some things you'll want to pay attention to if you have, or are planning to get Parkinson's Disease.
On Monday the 12th of January (or as some of you may think of it, tomorrow) a Telehealth Conference will take place. This month's topic is "Useful tools for stress management with Carla Carnegie, MT-BC" As the new year starts and we find many stressors coming at us. Higher bills from the holidays, lack of sunshine, many more grey weather days and more. January is a great time to discover tools to help find your balance and reduce your stress. The Time for the Anchorage event is 1:00 pm in the Piper Street wing of Providence Hospital. To find the Anchorage meeting, proceed with all deliberate speed to Providence Hospital oncology wing on Piper St. Go to the second floor, walk down the lonnnnnnnng hall that stretches South from the cafe and look for room 2401 pretty much at the end of the hall on your right.

​ As if that weren't enough, the regular support Group meeting will follow  just a few days later on Saturday, January at 3:30 in the Anchorage Pioneer home. At the suggestion of group members Sally Spieker and Danny Lommel, the topic will be "Tips and tricks, ways I've adapted to PD" The speakers will be (drum roll) Each of us! Bring one simple thing you've found, learned or invented to make dealing with Pd easier. Think of it as "life hacks" for Parkinson's. For instance, when I freeze and can't walk, I've found I can get where I want to go by turning around and walking backwards.  Or maybe you've found a cool gadget that can help. We had a similar meeting years ago, and a group member brought a cane that unfolds into a little stool that he could sit on when he tired of hoofing. ( I'm sure James Bond will have one of these when he is diagnosed)​ So, think of one great PD hack to share with the group.
Looking forward to seeing  you,

Tuesday, November 25, 2014

December Calendar of Parkinson's Events

It's dark. It's cold. But at least you've got Parkinson's Disease. Given that, how could you spend your time better than attending this month's Telehealth interactive broadcast? You are invited to attend the Parkinson’s Education TeleHealth Presentation - A PDTeleConnection Monday, December 8th, 2014 at 1:00pm Speaker: Brian Gates, PharmD WSU School of Pharmacy, Spokane, Washington Campus Topic: Updates on Medications and Parkinson’s Disease. Please stay and join us for our annual Tremble Clef holiday sing along after the talk. For more information contact :  Meetings are free of cost. To find the Anchorage meeting,  proceed with all deliberate speed to  Providence Hospital oncology wing on Piper St. Go to the second floor, walk down the lonnnnnnnng hall that stretches South from the cafe and look for room 2401 pretty much at the end of the hall on your right.
Then we grope our way forward to Dec. 20, When we have our Holiday potluck for our December meeting. I'll bring something main dishy, and you bring whatever you would like to share.  This meeting will be a tad bit different as I hope to screen the documentary "Ride with Larry" about a South Dakota man's effort to ride his recumbent tricycle across his state to raise awareness of PD. Ride with Larry - Official Trailer - April 2014 from Ride with Larry on Vimeo.

Happy Thanksgiving, and watch your step, it's icy out there!


New Post Available on the NWPF Site

Diagnosis is a turning point, not a beginning. Or so I contend in this latest post for the Northwest Parkinson's Foundation. Last I checked, you could read it here.