06/19/98

Readers Talk about Alzheimer's

In response to Party Hats:

Several people wrote to me about the daily struggles they or members of their families with Alzheimer's or Parkinson's face each day. Sometimes they find relief and pleasure from unexpected sources.

• My dad is in the first stages of Alzheimer's and still lives at home with my mother. It is so frustrating for her that sometimes her patience wears thin. She decided to get away for a weekend, so I stayed with Dad and asked my grandaughter, who is eight years old, to stay with me. It was the best thing I could have done. She had the patience to sit with him and play "eye-doctor." Dad sat in front of the blackboard on which my grandaughter wrote a word. Then Dad read it and told her what it was. She really kept him busy, and he loved it. I've told Mom to have her over more often, so she (Mom) can have some time for herself. It works! -- Sometimes Children Can Help

• Alzheimer's and Parkinson's are stilling my once active and forever-on-the-go mother. It's so hard as the child and caregiver to see your parent slowly lose their ability to function. It's also hard on them, because they know what is happening and can't do anything about it. Any advice you could give me as a caregiver would be appreciated. Author's note: See the following website for Alzheimer's caregivers: http://www.alzwell.com/. -- Help for Caregivers

• It was great that you focused on the joy that your friend Joe brought to the lives of others, because that is definitely the way he would have liked to be remembered. I can relate to the story because it sounds as if you were writing about my grandfather. He, too, brought life to everyone and everything around him. Even though he lost a battle with this horrible disease, just as Joe did, I will always remember the happy times and have faith that we will be able to enjoy those good times once again some day. -- Remember the Good Times

• I was diagnosed with Parkinson's Disease nine years ago and have been writing about my experiences with the disease ever since. There is a big push to get the Udall bill through legislative channels to get more research funding. It think it helps to educate the public about this silent, debilitating disease that incapacitates more than a million Americans. We need more research funding to find a cure. Let me tell you a little bit about what Parkinson's is like: The first ray of light bursts into a kaleidoscope of colors in the early morning sky. What is the day to be like? I raise my arms and stretch a bit, clasping my hands that already feel heavy. As I shift to roll over and out of bed, my arm and leg twitch, eager to go, but no! I push against my stiff legs and launch into the first shuffle of the day.

  With arm hanging limp and clutched to my side and leg twitching steadily, I take one blue capsule, one-and-a-half round white pills, an insipid peach one and half of a yellow oval. In retaliation, the arm jerks uncontrollably and the fingers turn their backs for awhile and refuse to hold a knife steady or a spoon without spilling just a drop, to let me know who's in charge. It takes about a half hour before I can swing my arm, relax my fingers and step out across the dew. With batteries fully charged, yes, it's going to be a great day. The pen flows freely. With steadier gait I walk away. At the grocery store my credit card comes out of the holder with one swift movement and the pennies in change are gripped with strong fingers. Look, there is nothing wrong with me!

  The time is ripe to try that dress and fancy blouse on. In the close quarters of the fitting room I hang up the colorful clothes and reach to undo the bows and buttons. But what is this? My fingers are bananas and my arms will not lift to try the bargains on. The four glory hours have passed and I have to leave.

  I knew it wouldn't last. I just have to relax and wonder how that dress would have looked. Then I remember that it was chartreuse ... not my color anyway! The next morning the birds return with a flutter of red, white, yellow and blue. Yes, it's going to be a good day! -- Support Funding for Parkinson's Research

• Your story brought tears to my eyes, because it reminded me of another Joe. I was newly married with two babies and a beautiful wife. Above us lived the most decent couple you could ever meet. One day Joe's wife told us that he was getting sicker and sicker. He played the beautiful notes on his trumpet less and less. He was a musician and always worried about the music being too loud and waking the babies. "No, Joe," I always told him, "Your music puts them to sleep or puts us in a romantic mood." The music came less often. I graduated from college and moved on. Later we learned that Joe had passed away from Parkinson's Disease. While your friend Joe is handing out the party hats in heaven, our friend Joe is playing beautiful notes on his trumpet. Up there, there's no such thing as Alzheimer's or Parkinson's. -- Enjoy the Music

• Your article about Joe really touched home, especially the part mentioning rage over the injustice. In my case, my mother is forgetting things, and calling about her missing keys, license and what have you. When I get there, as I always do, because I haven't yet learned that she is not the dependable mother I knew for 50 years and can't help herself, I show her the keys or the license, and she says, "Yes, you have the keys. Why? I've had them all the time." Or she asks me to come up and fix the TV. When I arrive, she has unplugged the set or is seated in front of it watching her favorite show, without a clue as to why I'm there. I feel mystified and angry about it sometimes.

  What surprised and blind-sided me is the fact that I had never thought about my parents getting older and quieter and one day getting "the call" that one of them had died. And I'm a person who always imagines the "what if" scenarios to avoid surprises. Embarrassing, but not fatal. Thank you for the chance to vent. -- My Mother Needs Me Now

Please send questions or comments to bbruno@snet.net.