Maureen's Offerings


Parkinson's Disease

When it first happened mom thought her foot had fallen asleep. Funny thing was though, it hadn't been sleeping that she could remember. There was this occasional intermittent tingling. This continued to happen gradually getting worse, sometimes affecting her fingers or hands or randomly selecting various parts of her body. But she kept it to herself. After all she didn't have time to worry about such frivolous things. She was the mother of six children, was active in her church and community, and was a devoted wife.

But as the weird tingly indescribable sensation had become part of her every day life she finally decided to do something. That precipitated the phone call to me. She was 48 years old, was having some tests and thought there was something wrong. Two years later she received a diagnosis - Parkinson's disease.

The word, even though I had no understanding of what it was, struck terror sending chills through my body as she told me over the phone and later that year made it official via the family Christmas letter. It was upon hearing the words Parkinson's that I immediately thought of Mrs. P, the lady with whom our family had lived for a time when I was a child. Her husband had died of Parkinson's. The disease had forced them to give up the family farm, move into town; and from the little glimpses the poor widow shared with us at the dinner table concerning his long tortures death were awful. She spoke of him yelling, jerking wildly, and having a frozen haunting look to his face.

Fortunately by the time my mother was diagnosed in 1984 things were greatly different than the times in the early 1960's when Mr. P was diagnosed. She was given synamet, a wonder drug for Parkinson's patients, and it greatly reduced symptoms.

But like a gust of wind that appears out of no where the symptoms would return. This resulted in doctors suggesting new drugs. One of these led to hospitalizations with disastrous results - fainting from low blood pressure while standing and a blood pressure which soared over 200 while laying down. By the early 1990's it was obvious mom had Parkinson's. Tremors accompanied her every move and eventually she shook even when standing still. By the mid 1990's she started to forget things, than started having trouble walking when the floor changed textures. The smallest change in texture or the change in floor color was some how confusing.

I never told her but I recalled a client I'd had as a social worker who had started falling because her body would suddenly stop. In the Parkinson's world this is called freezing. I hoped this would never happen to mom. But I will never forget a day when she phoned me with horror and dread and downright fear in her voice. She had frozen in her kitchen. It had happened three times in the same day. She was so afraid and I had no idea what to say other than to tell her I understood that it must be hard and scary.

She started talking about having difficulty doing every day things. When we were invited to her town house for dinner I, foolishly, expected the wonderful scrumptious fare I'd had while growing up. Instead there were hot dogs (a family member grilled) chips and brownies bought from a local grocery store. It was than that the reality that she couldn't bake any longer or safely use her oven dawned on me. Shortly after that while visiting my home she was sitting at the kitchen table doing something. There was a very rapid sound as if a tiny jack hammer was repeatedly striking something. I realized, sadly, that she was trying to hold a pen and write, and that her tremors were at that level. I marveled at the fact that she could hold anything, that she didn't complain and that she still lived independently.

But her living independently was abruptly interrupted when in the fall of 1998 she fell because of a freezing episode in her drive way and had a compound fracture of her right wrist so severe that amputation was considered. This led to stays in nursing homes and multiple surgeries. With each operation we saw her becoming anxious and for the first time in her 12 years since her diagnosis becoming depressed.

When she eventually recovered she spoke only of two things, having deep brain surgery and getting back her driver's license which had been lost while she was in the nursing home. She tried, through a rehabilitation center, to get her driver's license and they determined that she was too confused, too shaky and did not have the attention span necessary to keep her mind on what she was doing. That was a huge disappointment. Than she had, at long last, the awaited surgery. The results were nothing short of miraculous. The tremors stopped. But there was a terrible cost. Doctor's warned her that one side affect could be the loss of memory and increased confusion. She went from a woman who, though somewhat forgetful since getting Parkinson's, was almost childlike in her need to be reminded frequently to keep focused on what she was doing. We hoped this would improve as her transmitter device which stimulated her brain was adjusted after surgery. But it never did. Instead her previous symptoms began returning in new ways. True, she never had the tremors as badly as presurgery, but she had more problems with intestinal issues, freezing, falling and cognition. She went from someone who loved to visit and socialize to someone who at a dinner with friends could not answer the question "Where were you from?" simply because she could not process the conversation as it moved from person to person. Yet she knew what she wanted to say. She was just paragraphs behind everyone else before she got it out. I can't think of anything more frustrating!

The culmination of her desperate efforts to live in her own home ended when my brother stopped by unexpectedly to find mom sitting on her couch unable to move for several hours. It was discovered that when her personal care attendant who the family had hired to help with daily tasks wasn't there she was living on microwave popcorn. She than made the decision to move to an assisted living facility close to several of her children. This new surrounding being so different from anything she had known previously simply made the cognitive problems worse. From there she was moved to a group home type situation which, though homey, left her with little to do with her time.

It was at this point at which she began having small strokes caused by the fact that her blood vessels no longer contracted and expanded the way they were supposed to because of the Parkinson's. Even though she eventually lived in a nursing home situation where she was allowed to have all the necessary nursing services she required in the end she still wanted and had the dignity of having her own apartment within the facility. At long last in July 2004 her long, 22 year battle with the disease that robbed her of physical, mental, social, and personal dignity brought her into the loving arms of Jesus where, through Him, she attained victory. If you would like to know more about Parkinson's disease contact www.michaeljfox.org

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