Wednesday, March 18, 2015

Diagnosis, A Disaster, or a Turning Point?

Note: This piece originally appeared as one of my contributions to the Northwest Parkinson's Foundation Community Blog, here. I plan to repost some of the best work I do for them at Off & On from time to time. (The illustration was inspired by Harry Truman's remark that having the Presidency suddenly thrust on him felt like "The Moon, the stars and all the planets had fallen on me" Which comes pretty close to describing the feeling I had when I was diagnosed.

“You have Parkinson’s Disease.” There is no good way of getting this news. Even as the words enter your world they seem to rearrange it irrevocably and permanently for the worse. How can life be the same once the words “Parkinson’s Disease” attach themselves to you?  A chorus of emotions crescendo. You grieve your old life and dread the bleak future you are informed is inevitable.

The current state of the art technology allows neurologists to identify Parkinson’s Disease only after it has been at work on us for years. Researchers now know it lurks in our guts and slowly erodes our sense of smell for perhaps a decade before the tremors, stiffness and slowness considered the hallmarks of the disease become apparent and diagnosable. Even more disturbing, these symptoms only appear after 60 to 80% of the cells in the part of our brain that make the dopamine that signals our muscles to move are out of commission.

This puts the day of diagnosis in a different context. It’s difficult to not think of diagnosis as coinciding with the start of your disease, as the point your troubles began. But since diagnosis only comes with the onset of identifiable symptoms, symptoms that only appear after significant damage has already been done, diagnosis is not the disaster it seems. Instead, it’s a wake-up call. Disaster would be hitting the snooze button.

The disease that threatens your future has already been shaping your past. But now you are aware. What you say good-bye to with diagnosis is not your health - that was under assault years ago. What you really bid farewell with diagnosis is ignorance. And while ignorance is bliss, knowledge is power. Which of these two is more useful to you right now?

In the days when there wasn’t much you could do about Parkinson’s Disease, you could make a shaky case for blissful ignorance. It’s much harder now, when early interventions have been shown to increase your quality of life. We have knowledge and tools available to improve our ability to make better lives for ourselves that weren’t available just ten years ago. We now know much more about the major role that exercise plays in moderating symptoms and possibly modifying disease progression. We now have the surgical intervention of Deep Brain Stimulation. There is a raft of new approaches on the horizon, like medicines that work outside the brain’s dopamine pathways and even a possible PD vaccine.

Whatever value present or future interventions hold, you can’t take advantage of them unless you know you need them. Ignorance is looking less like bliss and more like misery. Stupid and blissful is at least a little tempting. Stupid and miserable has no allure at all.

The discussion can’t take place until you are diagnosed. So maybe your diagnosis day wasn’t one of the worst in your life, the day your future jumped the rails, the day the moon and stars fell on your head. Maybe it was the day you began to pry them off. That’s a pretty good day

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,