Sometimes I Want to Disappear
I think I've had Parkinson's for a long time. I was called grace because I couldn't stand on my two-feet. Constantly falling, leg weakness, tremors, learning disabilities, always in pain. But doctors could never figure it out.
I finally went to neurologist, and was diagnosed with Parkinson's disease over two and a 2 1/2 years ago. Since I've been watching my life pass me by. I've read that you don't have pain with Parkinson's. That's hogwash because not a million people are wrong.
Living with Parkinson's has changed my whole lifestyle. First, it was tremors then stiffness mostly in my back and neck. Doctor's were confused. For 5 years, I kept asking doctors what was wrong with me. Having so much pain I had cortisone injections one after another.
It's difficult everyday just trying to get up out of bed, getting dressed and even trying to eat. Most importantly, trying not to fall.
I used to be really outgoing and on the go. I was a photographer but Parkinson's hindered that. I live with fear of falling. Because I'm so off balanced in mind and body. I've fallen so many times, but I'm afraid the next fall will be lethal. Just recently, I broke my wrist in three places and was put in a rehab home. I called it Alcatraz myself because everybody was so mean. Every time I got a meal there was always something that was hard for me to open, and they didn't offer to do that so most of the time I didn't eat. I had to wait long time after pushing the alert to go potty or hope for some pain medication. I could have been having a heart attack and they wouldn't know it. I lost 10 lbs within 2 1/2 weeks while there.
I recently read an article on bad rehabs in the US. Believe it or not this place was on the top list, but not surprising.
Another depressing thing that happens when you have Parkinson's is you start losing relationships. Some people are uncomfortable around you. They don't know what Parkinson's is and it makes them them uncomfortable. Even my family doesn't understand me. Having dementia is difficult because sometimes I can't say the right words or find the right words to say and they come out wrong. So I say things that I don't intend to say and they get upset.. My Son who is supposed to be my caregiver has abandoned me. Parkinson's puts a strain on relationships. I try really hard, but I can't help it with this stupid disease. Sometimes I just wish I could disappear because I don't feel like I belong anymore.
I wish I could find a friend that would understand me and willing to listen, but you can't find those hardly anymore so you're alone.
All I can do is take one day at a time and hope a miracle happens and people will listen to me and understand me and not back away.
Do you find music to be an important factor in your life with PD?