Location: West Virginia
Occupation: retired church worker
Occupation: retired church worker
When were you diagnosed with Parkinson's?
I was diagnosed in March of 2007.
What symptoms caused you to suspect something was wrong? Were there things you couldn't do anymore?
The first thing I noticed really years before I was diagnosed was that I couldn't walk as quickly as I had. It was harder to turn over in bed, and sometimes I got extraordinarily hot and tired- like I wouldn't have as I'd known myself before. The thing that really got me to the doctor was a tremor in my left hand.
Did the struggle (pre-diagnosis) make you frustrated, angry, depressed, etc?
I was depressed and probably due to the Parkinson's, because many people with Parkinson's will actually experience depression ten to fifteen years before they are diagnosed.
After you were diagnosed, did you research it? What did you learn?
A lot. I learned that one in every ten-thousand people have Parkinson's, and there's no cure for it. Even the treatment doesn't give good results after a certain time. Some people get good results for ten or twelve years and some people for eight or ten with Levodopa, which is the main drug they use to treat Parkinson's.
How did you feel knowing you had a disease?
Well at first I was angry, then I was sad. Now I think I've just sort of come to accept it. I try to do the things that the Parkinson's Association and the Michael J. Fox Foundation say will help, and I just live with it.
Did others want to talk to you about it? Did they treat you differently?
Some people did, and some people didn't. I don't think [anyone treated me differently].
How did you tell your family? What was their response?
Well I told most of my family right away. My husband knew, and my son knew. Other members of my family and those at work I told right away. They're very supportive, and they were also a little angry that I had gotten Parkinson's. But basically they were helpful, supportive, and loving. Work became the great support group for me. They didn't treat me any differently, yet if I was having a bad day, they were willing to talk to me about it. There were a couple people in our church with Parkinson's that I talked to about it. It's always nice to know someone with the same or similar illness that you have, because they really understand how you feel.
How did you feel around other people? Did your opinion of yourself fall or grow?
Well, once I got my tremor under control, I felt okay. But before I was diagnosed and had it under control, I felt self-conscious about it. Other than that, I think I felt [comfortable] around other people. I think my opinion fell, because I thought, Why did I have to get this? At first I was pretty depressed and thought I wasn't handling it very well; I'd always thought if I got any type of disease or illness I would handle it better than I did at first! Then later I did think I handled it well- I continued to work and do the things I had normally done. I felt a little bit better about myself for being able to do that.
Did you want to talk to others about it?
I wanted to talk to others with Parkinson's. It was almost impossible to do that, because we don't have a Parkinson's support group [in my town]. Even on the phone and over email with all the Parkinson's associations you can contact, I just couldn't seem to find someone who said, "I got diagnosed, and this is what you can expect." Finally, I got all that information from reading rather than from talking to others. I talk to a friend, who's a counselor, and to a couple of my good friends and my husband. Mostly their responses are, "You can do this," and "Eat well, sleep well, and stay in good condition. And when they have a cure for it, you'll be ready."
What has been the most difficult aspect of Parkinson's?
Being tired! I always had a lot of energy. Being tired and depressed are the worst aspect of it. It's very annoying!
What was your hardest day or lowest point? What were your thoughts? What were you feeling?
I can't think of a single instance, but I just wasn't feeling well. Again, I'd ask why I had to get it. But I know there is some kind of neurological glitch in my family; my grandad had ALS. My dad's brother had MS. I have Parkinson's, so I guess I wasn't as surprised as some people might have been.
How have you gotten yourself through any negative thoughts and feelings?
Get up, get dressed, and go on everyday. There's nothing else you can do unless you just want to lie in bed and not take part in life. You just have to keep on.
Do you have any advice for someone with Parkinson's?
Find a good neurologist. Find a movement disorder specialist. Try to continue doing all the things you've done. Walk, go to the gym, do yoga, and pray! Those are all the good things.
For more information on Parkinson's, visit The National Parkinson Foundation at: http://www.parkinson.org/parkinson-s-disease.aspx