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For those who might want to know a bit of the background story I wrote the following for the Creative Writing group I am part of.
What are you thankful for?
Inspired by Mandela’s Thanksgiving thread on the Wonder Cafe, I’ve been thinking about what I am truly grateful for, and realizing that it is the last seven or eight years of my life. When I was first diagnosed with Parkinson’s and learned something about the condition I thought probably I had about five good years ahead of me, and then possibly another five years of declining health. I didn’t want to look beyond that. I have had over seven good years.
It was a good time for us. Our daughter was finished her treatment and cancer free. We were getting settled into our retirement. We had a few trips to Florida to break up our winters (been there done that). We had driven across Canada to the West Coast, our first trip west of Ontario. And it was wonderful. We had visited Newfoundland for the first time. We were both enjoying good health. My bowling score was in the mid-80s and I hoped to increase it after cataract operation and implanted lenses enabled me to see the individual pins for the first time in my life. I was active in my church, enjoying book club and writing group, Bible study and discussion, working with the less fortunate, and helping out with the children at vacation Bible school. I had a part-time vocation and a bit of income from doing pulpit supply as a Lay Worship Leader in several postural charges in the region. Yes, life was good.
Then I noticed a strange twitching in my left thumb. I mentioned to my doctor during a routine visit and he thought perhaps I should exercise it more squeezing a ball. The thumb continued to twitch and I noticed a twitch in the back of my hand. Before long there was also a twitch in my forearm. I mentioned this to a nurse practitioner that I knew and she suggested that I bring it up again with my doctor. He mentioned that he suspected Parkinson’s and that he would refer me to a specialist.
I really didn’t know anything about Parkinsons at the time. Oh, there an acquaintance in the church who I knew was struggling with the condition. I noticed him using a cane in the building and a nifty electric scooter to get around outside. With a common ailment we shared some support, until his voice grew so weak (and my hearing deterorated) I had a hard time hearing him to carry on a conversation.
Another acquaintance, during a long drive to a conference, shared the story of a relative’s long drawn-out, difficult death from Parkinsons. ‘A terrible disease’, she declared before I had the opportunity to tell her that that was my tentative diagnosis.
As my tremor increased it was no longer simply strange and interesting, but annoying, not only to myself but for anyone near me. I had trouble reading; the newspaper, magazine or book shook too much. I noticed some stiffness and difficulty getting my fingers to do what I wanted. Occasionally I spilled soup or coffee; I got food stains on the front of my shirts. Sometimes I couldn’t thread a needle, or fasten my in my bra and had to ask for help.
Unfortunately, when I did see the specialist, the diagnosis was no longer tentative. I was in the early stages of Parkinsons. Medication would help. Before long many of these early annoying symptoms were under control.
I decided that I would be up front about this, so I told my family, my friends, and the congregations where I did pulpit supply. Most were supportive. The churches all reassured me that they wanted me to continue leading worship and they still continue to call me. However, one woman who I considered one of my best friends at the bowling alley immediately started treating me differently and told me ‘the medication you are on will make you suspicious and paranoid; you will have to watch out for dementia.’ In another group that I belong to one woman stated in no uncertain terms ‘if you Parkinsons you already have dementia’. I don’t think either of these people knew that this was one of my greatest fears. I requested a cognitive test from my doctor and easily passed; two years later I had another test and showed no deterioration. My doctor predicted that this would not be a problem for me. Actually, the percentage of people with Parkinsons who develop some form of dementia is not much greater than that of the general population.
With medications helping to control the tremor. common sense helped with other problems. For instance, I could lay the newspaper down on the table to read rather than trying to hold it. I learned to concentrate on the things that I am able to do not all the ones that I may have to give up.
Over the years, Seelerman and I had discussed starting to square dance. The fall I was diagnosed Seelerman decided it was time to give it a try. So, we signed up for the square dance lessons and loved it, as I knew we would. I had no problem learning the calls or in keeping my balance, and I found out that seniors in dance clubs don’t swing as vigourously as teenagers at Camp dance.
The writer’s group I belong to I read a short story about the Canadian North and was encouraged to expand it into a. novel Should I take on such a commitment? It would require a lot of research, and time. How much time did I have left? But I might as well try. With their encouragement, help in research, proofreading, editing, and solving computer problems, I completed the novel and had it published.
I guess I don’t have dementia.
I experienced various other problems.
Vision: my eyelids droop so that when at rest I appeared to have my eyes closed. When I read the words jump around on the page as the muscles around the eye tremor. I read much more slowly than I used to.
Sleepiness: some people with Parkinsons, including me, tend to fall asleep unexpectedly, even in public places – very embarassing. For this reason I restricted my driving to very short distances and my husband started driving me on out-of-town trips.
Fatigue: separate from the sudden episodes of sleepiness, is an almost constant feeling of fatigue. Sometimes between unloading the bottom rack of the dishwasher and the top rack I have to take a rest. Not only do I get tired during activities, but also while sitting in a chair. Sometimes just lifting my arms seem too much effort. I push myself to stay involved and I must say it helps. If I’m going to be tired anyway I might as well be tired from doing something. Sometimes after an evening of dancing I feel better than when I started.
Parkinsons is a progressive disease. I don’t notice the difference from day to day. It is more evident over the seasons of the years. My bowling scores, that originally went up after cataract surgery, soon began to slip. Over the years have gone down from mid-80s to 80, to 75, to struggling to make 70 with an occasional good string, or strike or spare to brighten my day.
On our second drive across Canada from New Brunswick to BC, and I realized that I couldn’t do some of the things that I had done five years earlier. I tired more quickly on long hikes, and following a rugged path by a mountain stream was out of the question. But I did manage to climb into a small plane and control my fear of heights so that I could share with Seelerman the joy of flying over Lake of the Woods. We had a great trip and we still talk about the highlights which included meeting several people that I originally knew from the Wonder Café.
Actually, the Wonder Café 2 has been a great boon for me. I participate regularly. I’ve met some wonderful people online (followed by meeting some in real life). We have supported one another through times of crisis, illness, the death of loved ones. We have asked for or given advice on anything from where to go on vacation, to holiday customs, to bread making. We have shared laughter and jokes and our Secret Santa gift exchange. We have engaged in ‘open-minded discussion and exploration of spiritual topics, moral issues and life's big questions.’ This year I have been sharing my thoughts as I ‘read the Bible all the way through’.
Seelerman and I have watched our granddaughter graduate from high school, enter the adult world of work, studies, and the joys and frustrations of owning her first car and taking care of it.
We’ve enjoyed having our grandson visit several days a week after school, until he was old enough to take the bus home and spend an hour or so alone until someone else in the family got home. I took him to swimming lessons; and to Vacation Bible School where I volunteered to help with the children. But two years ago at age 12 he no longer wanted to attend and I found that I no longer had the energy or patience to deal with the children. I still continue to take an interest in faith development and in outreach at the church.
We have enjoyed taking Grandson with us on short trips: to the Gaspe Peninsula where we saw the Perce Rock and went whale watching; to Miscue Island (with our son along) where we swam in the ocean and experienced a bit of a different way of life; to Nova Scotia where we visited Peggy’s Cove, Lunenburg, and the rugged South Shore , Port Royal, and other attractions. A trip to NS again this year reminded me that I no longer can follow a rugged trail down from a cliff to the seashore, but contented myself with walking along the dikes first built by the Acadians.
Over the years I’ve watched Seelerman gradually develop into a caregiver, He does much of the laundry, some cooking, and housework. And almost all of the driving.
Seven plus good years – when I asked for five. So much to be grateful for. The Bible says three score years and ten – that’s seventy. I’m to be 78 in two weeks. I guess these last seven or eight years have been a bonus!
I have a feeling that recent changes in my physical condition may indicate I am entering a new phrase of my Parkinsons. Lets see what the next five years have in store for me. And we won’t worry beyond that.
