Hi
good topic, close to heart. I am at disneyland with my daughter and her two friends. Its greawill write more later

Girija

Hi All,

Girija: I hope that you're trip is magical...how lovely for your daughter!

The month I self-diagnosed, two months before I saw an MDS, and already at Stage 2.5, PD devastated my 20-year career in nonprofit development.

Rendered it unfulfilling. Impossible. Guilt-ridden. Gone. Disappeared to the dustbin of history. Just on the brink of saving the world (lol), I had to save myself.

The calculus was simple: use my few hours of energy each day playing eternal catch up at work leaving no energy for my family or myself...or ditch the job and conserve my energy for my two boys, my darling and my health?

No contest. It was obvious what I should do. Yet before I could act on it, I hit a wall. Physically, emotionally and psychologically. I simply collapsed. My body had made the decision for me.

Unbelievably 7 months have passed. I miss my colleagues, the intellectual challenge, the sense of usefulness. But I know it's better this way, whether Social Security approves my SSDI application or not. My heart goes out to those who don't have --or don't feel that they have--any choice but to work.

Poor but happy Rose

Hi,

Thank you. It's when reading all of our stories, I feel most angry at having PD. Why should we even be faced with such a decision?

In my case, I HAVE to find work. I would really love to stay home with my little one and possibly work part-time, but I don't think it's financially feasible. Needless to say that added stress does not help in the least. I have a job interview next week and fear that my meds won't work, or that I'll get a surprise early wearing off. Having to hide this makes it so much more difficult- as if we all didn't have enough to deal with already; we end up feeling inadequate because we can't keep up and like social pariahs because PD is for "old people".

Linda, I happen to be a librarian too. I worked in public libraries for many years before switching to the K-12 setting. I'm glad you had supportive colleagues. Hope you're still active in libraries somehow?

Soania, I can't imagine. You've always had this PD thing with you from the start. To answer your question: yes, I think by all means we struggle between wanting to feel productive and "normal" when it comes to career yet also feeling that we should spend as much time as possible with loved ones. If part time in a clinical setting is too much at this point, I think exploring other outlets for your talent and knowledge is a good idea. Might you be able to teach as adjunct faculty near you, or teach an online course? Maybe there's a way you could creatively combine your children and career...is there any way you could volunteer in a medical setting and have your children there helping too? You'd still be able to share your expertise and stay connected to what you feel passionate about- this would be great for kids to see too. Just an idea.

Rose, "poor but happy" says it all. I'd say "poor but rich in spirit" too

-Laura

Yes, i miss my work, but physically and emotionally, I know that I am better off taking an early retirement. I've been able to use my research skills for volunteer work and Parkinsopn's advocacy, and found that has helped me cope with the job loss.
The Parkinson's Disease Foundation has published a number of useful resources on living with PD, and I wrote a Fact Sheet for them on-- "Employment and PD: Working It Out". It is available online at :
http://www.pdf.org/pdf/Employment%20...a%20Herman.pdf

I think the Job Accomodations Network is especiallly helpful - they will suggest specific adujstments in the workplace that can help people with disabilities continue working. It is linked to from the Fact sheet or go directly to the JAN pages on PD at
http://www.jan.wvu.edu/media/PD.html
linda

My wife is a costuming consultant a Disneyland. She works for Walt Disney Imagineering mostly. Other than a 13 year hiatis to start a family, she has worked for them since high school.
We met at Walt Disney World where she was a costumer and I was a lighting designer-gaffer.