A wounded Parkinson’s soldier

November 28, 2011

I don’t quite know where to start. I always want to be respectful to MrP. He’s a good man. He’s a human being and I like human beings, generally. I think most are pretty damned fine people. MrP is doing brilliantly at work. Most people see him handling this Parkinson’s thing brilliantly. Hats off to him, big respect.

There is just one fly in the ointment. He is very angry. With me. Few people see this. His paranoia has come back in droves. He suspects I am having an affair, if not several of them. My emails and phone texts are all found to have meanings in them. He looks at them alot. He thinks I lie to him. My work twitter is apparently in code. (I have stopped tweeting. I love talking to people in my work community, they are great fun and just like a good natter, but it distresses him too much. MrP’s closest friend suggests I carry on, but I don’t like the arguments it can cause.) He has seen me do things twice, that I know of, that I have not done.

He is angry that I am not a doting, loving wife. Yet how [...] continue the story

Mixed Cursing: A Graphic Novel on PD

Peter Dunlap-Shohl is an obscure cartoonist who lives far, far away in Anchorage, Alaska.

His diagnosis of Parkinson’s Disease (PD) lead him to create a very personal and open blog. Though “Off & On” started as an information clearinghouse for the Anchorage Parkinson’s Disease Support Group, where meeting schedules, agendas, speakers etc could be found it also become a therapeutic hobby for him.

Recently Peter has taken on the challenge of creating a graphic novel that illustrates his battle with PD. He has graciously allowed Patient Commando to host images of his work as he completes it.


More Mixed Cursing

Breaking the code of silence

By Sheryl Jedlinski

Fear of where PD will lead us limits contact with people in advanced stages of the disease.

When diagnosed with Parkinson’s disease, I had many questions and fears but couldn’t bring myself to seek help from a support group or attend a patient education symposium. My need for answers was not nearly as great as my fear of seeing others in advanced disease stages and thinking how that could be me someday. I never imagined that I might also meet people who were doing well despite living with Parkinson’s for many years.

For a long time, I believed I was the only person with Parkinson’s who avoided those in advanced disease stages. I felt guilty about this and hoped others would not one day find me too scary to look at. These feelings are the white elephant in the room that no one acknowledges, though we all have them. Sharing our feelings and fears, and helping each other get past these is essential to weakening PD’s hold on us.

Over time, I developed a coping strategy that enabled me to attend symposiums. My husband and I would arrive late and sit in the back where all I could see were people’s [...] continue the story

A Guitar Player’s Experience

I am sixty-five years old, and have played guitar for over 50 years. I was a recording and touring musician for over ten of those years, so it was puzzling and disturbing when three years ago my right hand started to spasm when I played simple rhythm parts. At first it was only occasional, but as it increased in frequency, I consulted a neurologist, and was diagnosed with Early Onset Parkinsonism at 62. I have been taking Azilect now for the last two and a half years, and the progression of my condition seems to have slowed as a result. My concern, however, is that even with Azilect, I cannot play a complete song on guitar, as my right hand starts to tremor uncontrollably after a few bars. Dealing with this condition has been difficult, because playing music is and has been such a big part of who I am. While initially depressing, I determined that I would not let my life be defined by Parkinson’s. I found that I could sustain longer passages of songs if I played with an open hand rather than with a flatpick, so I have worked on developing this technique. More importantly, I found [...] continue the story

I have a future!

Good morning. I was asked to tell the story of how I overcame adversity. You see, I was diagnosed with Parkinson’s over 15 years ago.

I certainly thought I had overcome the adversity of my disease. Well, as it turns out, I’m not sure I have overcome anything. I am still as scared as I was that fateful day I was diagnosed. I am still as confused as I have ever been about how and why things happen both to me and to those that I love. Yes, I am fairly certain that I have not overcome any adversity of late, and certainly not the adversity of Parkinson’s. But that is not the end of this story. God willing, I would like to share with you all how Parkinson’s has helped me become the person you see before you today. I would like you to meet Gregory Layer.

It began when I was only 25, shortly before I graduated from Cal Poly in December of 1989. I noticed a slight tremor in my left foot. Over time, my tremor became more and more difficult to hide. During the next few years, I went to see a variety of doctors – neurologists, acupuncturists, [...] continue the story