Wednesday, April 22, 2015

PD Awareness Chat- Boiling Down My Answers

Here are the questions, along with most the answers I gave to the Healthline Parkinson's awareness chat today. I cheated and worked out my main answers ahead of time as I am an amateur typist at best, who has PD. It seemed worth doing as they sent the questions beforehand, and I could give better answers if I wasn't editing typos as I went, not to mention saving time. I did respond to some individual questions and remarks live, but the responses are buried in the threaded replies. The whole confusing-yet-informative shooting match is here complete with answers from the other panelists.

Q1 What advice would you give to a newly diagnosed Parkinson’s patient and their family?

A1 First: Don't panic. I remember my diagnosis as feeling it was one of the worst days of my life. Everywhere I looked I was told three things. PD was progressive, incurable and disabling, oh, and a fourth thing. there was nothing I could do about it. But diagnosis is not a death sentence, it's a wake-up call. By the time you are diagnosed, you've probably been coping, mostly unconsciously with PD for more than a decade. You're already a pro! Now that you know what you're up against you can take advantage of what we've learned about how exercise can significantly help your balance, motor abilities, and likely slow progression. Second: learn all you can about Parkinson's disease, knowledge is a critical coping tool. (Plus, Parkinson's is darned interesting. ) And third: beware of depression and apathy, both of these non-motor symptoms of Parkinson's can severely undermine the patient's ability to cope with this complex disease. Depression in PD can usually be dealt with effectively with medication.

Q2 What resources are out there for patients and caregivers? What is the best way to cope with the disease?

A2 There are tons of resources but they vary in availability according to geography. If you live in rural Alaska or on a remote ranch in Wyoming. you're lucky if you even have a solid diagnosis.  If you live in a large city with specialists, medical schools, Parkinson's Support groups, caregiver support groups, dance and exercise programs for PD, congratulations, you are among the parkie elite. For those who are limited by where they are you will have to be more active in creating  your own coping tools, . You and your doctor can certainly work out an exercise plan. The Web is your friend. All the national Parkinson's groups have web sites chock-a-block with free info, pamphlets, DVDs etc... If there is no support group in your community, well, maybe it's up to you to form one. It doesn't have to be complicated or fancy to have an impact. Just seeing other people cope with the disease is therapeutic. As for coping with the disease it's hard for me to overemphasize the role that exercise has played in my kit of coping tools. One of the worst things about diagnosis was the feeling there was nothing you could do. That is certainly no longer true. See the Davis Phinney website for more on exercise.

Q3 Peter, since your diagnosis over 10 years ago, you have become a major patient advocate for Parkinson’s, what has driven you to help others affected the disease?

A3 Well, if  by "advocate" you mean "Loudmouth." It's weird, but when I found out I had PD, for one of the few times in my life it was quickly clear to me that certain things had to be done, what at least some of those things were, and that I was in a unique position to do them. Not doing them didn't seem like an option. It started with our local support group which I became in charge of sort of by default, as  the only person with enough spare energy to run the thing. Then came the blog, Off and On. Because I find the combination of words and images we call "comics" a powerful medium for expression and learning, it was natural for me to want to experiment with it. At the time there was no other patient I could find who was doing that, so I figured I was in a unique position to document the experience in a new way,  (Since then there has been at least one other person working on this - Marty Bee in Louisiana) It occurred to me that the erosion of my drawing ability would become apparent to the reader in real time if they followed regularly, they would see PD in my increasingly erratic line.  That happened, to a certain extent, up until my brain surgery, when things snapped back into better focus. 

Q4 Awareness is key to shaping policy around Parkinson’s. Ted, can you provide a little info on PAN and your main initiatives around Parkinson’s policy this year?

Q5 What are some ways patients can stay active and live healthy lives with Parkinson’s?

A5  As noted above: exercise! To remain active, be active. Don't let Parkinson's take anything away from you before you have to give it up. When playing the guitar got too complicated for me, I switched to  the mandolin, fewer notes to keep track of, and new things to learn.Am I a great mandolin player? No, adequate from time to time. But it helps keep me going. And I actually have finally started to make progress in some areas. And stay involved with your community, join a support group, dance group, Yoga group... Isolation is severely debilitating to those of us with PD.

Q6 Are there any misconceptions about Parkinson’s Disease?

A6  Absolutely. For starters PD is not just a disorder of the old.  Parkinson's Disease can occur in any age group, even young children.  PD is not just a disease of the brain, its effects can be found in every cell of the body. PD is more than a motor disorder, It has significant non-motor aspects, such as depression, constipation, bad balance, acting-out of dreams, inability to smell properly and on and on...

Q7 Cathi, you’ve had over 30 years of working as a neuroscience nurse, how has treatment for Parkinson’s Disease changed over the years?

Q8 What research/medical advancements are you most excited for and have the most promise?

Q9 I think there are many opportunities out there for research, the alternate brain pathways to the dopamine paths that are also affected by PD such as the calcium channels, are just now starting to be explored. And what about the white cells of the brain and their effect on PD? Virgin territory. Investigating what is going on in the early years before motor problems set in is important if we want to catch the disease before it begins to mess with our brains. And of course, what are the further possibilities of coping with PD through the use of exercise?

(Bonus, they sent this question about the book as part of what thet would ask, and then didn't ask it. But here it is, along with my answer.

 Want to tell us a little bit about your upcoming book “My Degeneration”?

My Degeneration" is a memoir of coping with PD told entirely through comics. After I had been blogging a few years,  people began to tell me I should do a book. I was reluctant, because A.) Authoring a book is a lot of work B.) I have Parkinson's Disease, which limits my skills and my energy to do work, and C,) There are (in spite of A&B,) tons of books about living with PD out there. I didn't believe I had anything special to contribute. Eventually my friend Steve Aufrecht won me over with this argument, "You treat PD as an adventure." Three years later, Penn State University Press will bring it out in October. I hope that it will give the newly-diagnosed credible hope for many years of enjoyable life in spite of this affliction. There is a good capsule description of the book here )


Andrea B said...


I think what you're doing on this blog is amazing. I wanted to reach out because I'm part of a group of students at Harvard Business School who are launching a medical accessories company. Our aim is to infuse dignity into the patient experience by designing medical products that are both functional AND design-focused for patients with chronic illnesses or disabilities.

You can see our website at for an introduction to our first product, a bag for carrying self-catheterization supplies. We believe that this bag can help self-catheterizing patients with Parkinson’s organize and carry their cath supplies in a safer, easier, and more discreet way.

We are so inspired by your blog and your work, and would be honored if you would consider sharing information on our company with your readers. Understand that’s a big ask, so we would love to connect with you to introduce ourselves in more detail. Please let me know if you would be willing to chat.

Thank you!

Peter Dunlap-Shohl said...

Hello Andrea, thank you for your nice comments about the blog. Naturally I am concerned about the dignity of PD patients, and applaud your effort to help us maintain that dignity. However, I don't think I bring enough personal enthusiasm to this solution of this problem to write a post that would work well. I wish you the best and thank you for taking the trouble to write.