Eight years ago, I was diagnosed with Parkinson’s disease (PD) at age 53. I thought I had carpal tunnel syndrome. When the doctor told me it was Parkinson’s disease, I sought a second opinion. I then went to Johns Hopkins and was given the same diagnosis.
My grandfather had PD back in the 1960’s. My mother is 83 and does not have the disease, nor do any of my 5 siblings. In 2003, I went on Long Term Disability after two years because I had a stressful, strenuous job as a manger in a large department store with long hours .
My PD has gotten worse over the years and doctors keep adding more meds and more dosages. I now take Sinemet, Requip XL & Comtan each 4 times a day. I started taking the Requip XL in November of 2008. It was suppose to be the miracle drug, one pill a day lasts 24 hours. Well, I am taking 3 at 8 am, one at 4 pm and one at 8 pm. By 11 pm, I am stiff, cramped and unable to move, much less walk. The good thing about it is that when I was on regular Requip, if I waited too long in the morning before taking my medication, my left arm would go up into the air and unable to bring it down. That has only happened 3 times since I started taking the XL version of Requip. Still my medication seems not to work fifty percent of the time and there is no rhyme or reason as to when they will work or why they will not.
When they work people can barely tell I have PD, except for my legs shaking. When they don’t work, my feet won’t move, sometimes they curl inwards. I get cramped, twisted like a pretzel or a rubber band that is twisted to the point where it’s about to pop. I am also in pain and have the severe sweats. When the meds are wearing off or starting to kick in I do a lot of movement, “I do a little dance”, kick my legs. When it’s trying to kick in I have to walk and no one can keep up with me. Because of all the movement I do I have lost 30 pounds in two years. I’ve gone from 148 pounds and being a size 12 to 118 pounds and being a size 6 or even a 4. I’m 5′6”.
I eat ice cream every night and never spare the junk food. I would like to put 10 pounds back on. I just started taking the Apokyn pen injection at times when my other three medications don’t work. The injection seems to work. I take one or two injections a day but can take up to five a day. The weird thing is I’ve been on Apokyn since April and sometimes I will go as many as six days and NOT have to use the Apokyn. It’s like a miracle. Of course, I still can’t walk during the night or morning until after I take my meds. I manage to scoot to the bathroom when necessary. I tell myself “Left, Right, Left, Right”.
I still paint and that I was something I was afraid I would not be able too. I paint in oil from photos of vacation spots and do paintings to match children’s rooms. You can see some of my paintings on “MySpace” or Facebook. I have been painting since the mid 1960’s while in high school. I was only doing one to three a year, mostly for wedding presents or shower gifts, however I did twenty paintings the first year I was on disability. Since my diagnosis with PD, I have probably painted approximately 120 paintings in my life, probably 70 since my diagnosis. I did a 3 ft x 4 ft of the Thomas Point Lighthouse in the Chesapeake Bay, which was on display at the Washington, DC convention center for the 2006 World Parkinson’s Congress.
Check back tomorrow and all this week for a display of Kris’ paintings and poems!