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My thoughts at diagnosis. This isn’t too bad. I can handle this … but wait, a little explanation first. This is a blog. It is personal. The things I say come from me, how I feel and what I think. If you want to know that Parkinson’s is a neurodegenerative brain disorder associated with the loss of dopamine producing nerve cells in the brain whose four main symptoms are tremor, problems with balance or walking, slow movement, and stiff muscles then go to a reputable site like the Mayo Clinic or the Michael J. Fox Foundation. A good resource is the Davis Phinney Foundation which will mail you a comprehensive book for free. But Parkinson’s is a very personal disease. PD affects each person uniquely and the prescribed medicines affect each of us differently. - some work for one person and cause serious side effects for others. I know about 20 people with Parkinson’s. Each person’s symptoms are unique and no one is taking the same combination of meds in the same doses or at the same times of day. A common conversation among PWP is what meds do you take and how do they work for you. We learn from each other and are our own best resource. Back to my thoughts at diagnosis.
This isn’t too bad. I can handle this if it stays this way. RLS under control with meds, right hand shakes a little, meds make my head feel a little funny, but my movement and balance are good and I can take care of myself. It stayed that way for two years and then:
This isn’t too bad. I can handle this if it stays this way. RLS under control with meds, right hand shakes a little, meds make my head feel a little funny, but my movement and balance are good and I can take care of myself. It stayed that way for two years and then:
Three years later I am James Bond’s favorite bartender. All my drinks are shaken not stirred. Both hands shake and sometimes my legs and body shakes. I ache and have painful leg cramps many mornings. Am beginning to have trouble with balance and stability. I move in one of three modes: normal movement most of the time, the PD shuffle when tired, and sometimes late at night and especially when dark I careen around the room like a pinball. Little old ladies want to help me while shopping. Kind people offer me their seat on the bus and I‘m not embarrassed to take it. The effort to do the every day and necessary - shaving, bathing, eating, brushing my teeth, putting my shoes on - is getting more difficult. PD is a physical disease that takes an emotional toll. The effort involved to do daily tasks slowly wears you down over time. It’s a double whammy. PD affects the bodies ability to function and also robs you of the energy necessary to perform tasks. Do the dishes - are you kidding , I’m just happy I had the energy to make dinner. But as my body shrinks in on itself and my abilities diminish my spirit grows stronger. Sense of humor intact.
What will the future bring? I don’t know but accept that PD is progressive and will get worse but I believe that I have some influence in determining the progression of the disease. So what am I doing to deal with it? Continued in the next post: Getting By.
