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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Social Security Disability Ticket to Work Program

Terri Reinhart

I was recently offered an opportunity to apply for a part time job. One of the aspects of this job had to do with job training for disabled people. I decided this wasn't for me, but it made me think. How many people on disability know they can try to go back to work without losing their benefits?

When I have to mention I am on Social Security Disability, the responses are often less than tactful and it started before I applied with“First of all, you're not disabled” and “I'd eat my revolver if I was ever diagnosed with something like Parkinson's.” Now I get the occasional comments like, “I wish I could quit my job and just stay at home and not have to do anything” and“You don't look like anything's wrong with you.”

What do say to something like this? I'd rather not go into a long explanation of my Parkinson's Disease and what it does that no one sees and why this makes it challenging to even consider trying to hold a job. I'd also rather not be looked at as a mooch. Really. I rather be working. Aside from just missing my colleagues, the professional atmosphere, and continual learning, working pays better.

Okay. I got my disability approved quickly. This was good. Still... it would be so nice to work and earn a little more so finances wouldn't be so tight. Could I earn any money without jeopardizing my disability payments? 

When I heard about Social Security's Ticket to Work Program, I was thrilled. This is one of the best government programs I've encountered. It meant I didn't have to worry about losing my benefits while trying to go back to work. It meant having the support of a Vocational Rehab Counselor or Employment Network. It meant having the time to see if the job would work for me before losing any benefits at all.

I met with a Vocational Rehab Counselor, a lovely man with cerebral palsy who used a wheelchair. Perhaps his words hit a little harder because he was also disabled. “Terri, I'm sorry to say, but sometimes a person is just too disabled to be employed.” I convinced him to let me try starting a small craft business through my home and it was okay for a short time, but he was right. Exhaustion set in once again and threw my Parkinson's out of control. It may not have worked for me, but it made me feel a lot better to try.

If you are on Social Security Disability and have any desire at all to try to go back to work, I highly recommend this program.

My neurologist was right. I can be active if I pace myself. Exercise is essential for anyone with PD and going out into the world on a regular basis is essential for me. Every now and then I get antsy and think of how nice it would be to be gainfully employed. So, when I was offered the chance to apply for a part time job making a decent wage, I thought about it.

I thought about it a lot before declining. The reasons I said no are complicated and have as much to do with the particular company as anything else. In the end, the biggest factor was my need to give my attention and my work energy to my family. Being in the sandwich generation, I'm babysitting for grandchildren and watching over my parent's needs at the same time. That's enough...

...for now.