Bill's story

1. When did you notice you had the symptoms of Parkinson's Disease?


My wife first noticed that I was no longer swinging my left arm and was starting to take smaller steps while walking. She did some research, thought I might have Parkinson's, then proceeded to try to convince our family doctor to refer us to a neurologist/movement disorder specialist. The family doctor wasn't convinced and didn't think a referral was necessary which resulted in a change of doctors. The new doctor immediately made a referral to a movement disorder specialist who in turn did testing and diagnosed Parkinson's.



2. What kind of exercises do you do for your PD?

As I have done all of my adult life, I continue to do floor exercises such as sit ups, deep knee bends (holding onto something), upper body turns, weights, etc.. For my mind, I try to read, play games, stay curious. I feel the exercises have helped me keep my body and my mind as strong as possible.



3. How many years have you had PD?

I was diagnosed in 2002, but likely had Parkinson's several years before diagnosis.



4. What type of Parkinson's Disease do you have?

Adult onset, with early dementia (Parkinson's diagnosed in my early 60's in 2002, early dementia diagnosed in summer of 2008)



5. What kind of medications do you take?

25/100 Sinemet, 4 times a day for the Parkinson's, Lexapro for anxiety (as a result of dealing with Parkinson's), Exelon Patch for early signs of dementia, as well as Super B Complex vitamins just in case they help.



6. What therapies do you go to?

I don't currently go to any type of therapy; however, I did go through a rehabilitation program to help me learn to sit and stand from a chair properly, how to get in and out of a bed, how to properly use a walker and cane, how to get up from the floor after a fall, etc. I understand Tai Chi and dancing is very helpful, but I haven't tried them myself.



7. What kind of medical treatments did you have to go through?

While going through the process of being diagnosed, I had MRI's to rule out brain tumor, hydrocephaly, etc. Went through a number of physical activities for the doctor such as walking, sitting/standing, hand/eye coordination tests, balance tests, etc. I also took tests for memory and anxiety.



8. How has Parkinson's Disease changed your life?

It has reduced my mobility greatly. I have balance problems and fall easily; I tire easily, feel weak and at times have internal tremors, and feel I need to nap a couple of times a day. I also fall asleep at inappropriate times; i.e.; while eating, conversing, reading, watching TV, etc. I developed double vision and depth perception problems and am no longer able to drive so have become dependent on my wife to run errands, etc. It has been two years since I gave up driving, and I must have gotten used to my wife's driving as she no longer scares me and I no longer fear for my life!



9. Do you have a caregiver who can help you when you have trouble?

My wife is my Care-Partner and gives me physical and emotional support, as well as a strong hand to hold and sense of humor



10.Do you have side affects from the medications you take? Such as drooling or ankle swelling.

I don't seem to have any side-effects from the Sinemet other than "wearing-off" of the medication and its benefits during the day. Particularly when there is a lot going on in the day. I was taking Mirapax for a couple of years and it seemed to help a great deal at first, but I developed serious side-effects, such as a compulsion to gamble, hallucinations, delusions and paranoia, unexplained anxiety and anger. I was slowly taken off the medication and those side-effects subsided greatly within a couple of weeks



11.Does your Parkinson's Disease seem to have gotten progressively worse overtime?

Yes it has. Initially I still worked, and was totally independent with no limitations and very little evidence of the disease. My Parkinson's has progressed over the past 7 years to the point that I no longer drive, my thinking process is slower and sometimes confused, I fall easily, I need assistance dressing, getting in and out of the bed, and sometimes in or out of a chair. My posture is poor, I lean and list more to the side when standing or sitting, I can no longer hold my head erect or my shoulders back and now have a defined "curving of the shoulders/neck and have a classic Parkinson's "stooped look". I have difficulty with the fine motor skills needed to write, tie my shoes, cut my food, button my shirt, etc. I now use a cane and probably should use my walker. For ease in getting around large stores or sightseeing, I sometimes use a wheelchair (wife powered).



12.Does anyone in your family have or had Parkinson's Disease?

Not that I know of, although in retrospect my Mother may have been developing Parkinson's in her early 80's as she was starting to walk with a shuffling-type gait, her posture was changing, as well as her handwriting, or these could simply have been age-related changes.



13.Has Parkinson's Disease affected your weight in any way?

After a lifetime of maintaining a steady weight, in my mid-60's I gained about 15 pounds (about the time I started Parkinson's medications), then slowly lost approx 25 pounds without explanation. I got to the point of needing a supplement such as Ensure to maintain my weight. I am 70 years old now and no longer seem to have an issue with losing or gaining weight.



14.Has your Parkinson's Disease been related to any prior head injuries?

Not that I know of.



15.Do you need any special equipment to get around with the Parkinson's Disease?

A cane, and sometimes a walker or wheelchair.