JUST CRUISING ALONG By Maureen Arcand INTRODUCTION As I begin writing another chapter in “My Journey into Aging with CP,” friends from the various phases of my life are being invited to celebrate my eightieth birthday. The birthday has already happened, but in Wisconsin you don’t plan big parties in the unpredictable weather of January, so a Spring date was chosen. The theme is “Progress and Legacy” and focuses on the changes I have seen in the lives of people with disabilities and my role in some of those changes. What makes it even better is that it will be a benefit for an agency whose board I have served on for a number of years and which helps people with disabilities and their families buy homes. Needless to say, as a person who has lived with Cerebral Palsy (CP) all my life, I never expected to live this long. As many of you who have read my previous reports know, I believe I am still here to share my experiences with others. It has been two years since the last chapter, “A Bump in the Road,” showed up on the web site of the Wisconsin Council on Developmental Disabilities. The Council, now known as the Board for People with Developmental Disabilities (BPDD), continues to support my efforts to share information with people who can use it. Over the last two years I have spent significant time trying to describe in more detail “how” I did the things I’ve done. People ask questions like, “How did you have and raise six children?” or “How did you get involved in advocacy and politics?” My answer has always been, “You do what you have to do.” When I tried to answer the questions, I found I couldn’t do it in a way that satisfied me. The temptation was to get way too detailed and more personal than I thought people needed to know. Since turning eighty and reflecting on those years, I am determined to share the changes in my life and disability over the last two years, while sharing in a general way the coping skills which I have used over my lifetime. CURRENT STATUS
The closing thoughts in the last chapter sum up where I was at that time. I wrote then, “It is still important for me to be involved in my church and in advocacy on behalf of people with disabilities. That means going on with my work on the State Developmental Disabilities Council and as a board member of an agency which makes it possible for people with disabilities to buy homes. The most important thing is that I can still think, communicate with other people, enjoy my family, and maybe help others with CP. You can be sure that I will continue to cope with whatever changes are still ahead and share the adventure of aging with CP.” As I begin another report on my own experience of aging with CP, I realize that statement is still true. One of the big questions at the time of the last report was, “Will I be able to stay in my own home?” The answer to that is that I am still here in my home with the assistance that I need. There have been changes, many of which are less obvious to other people than they are to me. My coping skills have been tested over and over. I still have the ability to cope with the physical changes. In fact, one of the delays in beginning to write again has been my desire to talk more about my coping skills without going into great detail. I decided to go ahead and describe the changes and then explain how I cope. Hopefully, writing it this way will allow people to better
connect the changes that have occurred with my own coping systems and the application of the coping skills in the real life situations I have faced. My current situation is that I am still using a manual wheelchair and just beginning to use a motorized chair, primarily outside. My manual chair still works best in the smaller spaces in my home. The accommodations that were made after I fractured my hip and began using a chair are still very effective. They include the walk-in shower, and a low table with a microwave oven. The table and microwave oven are still the primary accommodations in the kitchen where I prepare my own breakfast and lunch. I am still getting Meals on Wheels for my evening meal. Aides come in to assist me mornings and evenings. The routines which I have developed over the years still give me a satisfying degree of independence. The fact that I can stand, swivel, and move myself from the chair to the bed, to my recliner, and in the bathroom is very helpful, and is what allows me to be alone most of the day. As always, my children are close by and can respond very quickly if a special need arises. As anyone who has read any of my previous writing knows, I believe that most of my internal organs are affected by CP. Bodily functions such as breathing, bowel and bladder control, and swallowing appear to change very slowly, but can have a major effect. In the last two years, there has been a significant change in the control I have over my tongue. Obviously, this affects my speech, but my major concern is having food go too quickly to the back of my mouth and being swallowed before it is properly chewed. This is especially troubling in taking pills. So far, I have been able to develop an ability to cough things back up before they move too far down my throat and cause choking, but it is something that I need to stay aware of on a daily basis. In spite of taking Oxybutynin for spastic bladder for many years, I often do not empty my bladder completely. This has been a great concern because it has caused frequent bladder infections. The winter preceding my 80th birthday was one of recurring infections. Between my bladder and my sinuses, I was treating infections most of the time. Antibiotics would seem to take care of either one, but within a few weeks, one or the other would be back. It improved with the warming of the weather and a final lengthy antibiotic treatment. As another winter approached, I was determined to prevent another winter of infections. When advised that cranberry pills might strengthen the bladder, I began taking up to three pills a day. I am happy to report that I am emptying my bladder better and have had no infections this season. Likewise, I was given some preventive measures, primarily taking cranberry pills and drinking a lot of water for my sinus problem. The infections have not come back. Even my earliest research confirmed that people with Cerebral Palsy would be diagnosed with irritable bowel. For about 15 years, I have had a prescription for Dicyclomine to be taken before each meal. By learning what foods are most irritating and avoiding those, I have been able to minimize irritating attacks, and believe me, they are to be avoided. However, every so often I get careless about eating spicy foods and green vegetables, or eating the same foods within a three-day period. The good thing is that for me, drinking warm Jell-O will usually soothe the irritation. Very seldom do I have to take medicine to end the irritation.
The amazing thing to me is that I am not experiencing a lot of the health problems associated with aging. A whole panel of blood tests done in the fall of my eightieth year showed no heart problems, no diabetes, and a better calcium level than I have had in the past. Since I have never had any symptoms that I could trace to my thyroid problems, I continue to refuse to have surgery or even do more thyroid scans, which are very difficult for me because I’m required to hold still for prolonged periods. As usual, I have shifted my focus to my physical condition and how it affects my daily living. There is no doubt that my successful coping with these physical changes is the primary reason that I am still in my home and still participating in family and community life. Just as important is the fact that I have maintained my ability to think and solve problems. This is what enables me to carry on my responsibilities as a member of the BPDD, a board member of an agency that assists people with disabilities in buying homes, a County committee planning for the needs of people with disabilities in the case of an emergency requiring evacuation, and my Bishop’s Pastoral Council. All of these activities allow me to advocate for the needs of people with disabilities, which I believe is the reason I am still here. MOBILITY
What does it mean when I say I am using a manual chair? For me, it means using my arms, shoulders and legs to physically propel it. While it is easier to push my chair backwards with my legs to push back, it probably isn’t as safe as going forward and seeing what is ahead of me. It is the loss of balance that makes it necessary to use the chair. The fact that my head continues to pull to the left has a significant impact on my balance. While I can stand to do things at a counter or table, I cannot stand for any length of time or walk without balancing myself against something. The balance problem has been the cause of three falls in the house. In all three instances, I stood and reached for something, throwing off my balance. All my life, except for the fall that broke my hip, I have made every effort to pick myself up. With these three falls, I maintained that habit and wasted a lot of time and energy trying to get myself up from the floor, instead of pushing a button to call for help. In each case, I eventually realized that I could not get up, and pushed the button, and informed the operator that I needed help. With the system that we have in place, designated members of my family are called and made aware of my needs. In all three instances, a family member arrived within a matter of minutes. The last time, when my daughter and two of my grandchildren arrived, I was lying on my back on the kitchen floor. Upon leaving, after his mother had gotten me back in my chair, my grandson commented that I looked like a beetle on its back. Though I was embarrassed, I wasn’t hurt in any of the falls. It may be worth noting that in many years of falling, my body has always prevented my head from hitting the floor. I’ve accepted the challenge of learning to use a motorized wheelchair. My desire to be able to go around my neighborhood and into the broader community on my own is what is motivating me to continue to practice so that I can feel safe. I use a joystick to control the chair. I expect to be propelling myself the three blocks it takes to get to the Little League field where two of my
grandchildren play ball. One of my greatest satisfactions has always been my ability to cook and bake. My ability to stand is allowing me to do those two things in a limited way. For example, I can still bake plain bread by myself, but when I want to make the fancier coffeecakes, I need help. Because this kind of baking has become a tradition with my family, they are willing to provide that help, and I still have the satisfaction of knowing that I can create something. While most of my meal preparation is done in the microwave, I can still stand at the stove long enough to cook some of my favorite meals. This is a good example of my long-standing ability to problem solve and find other ways to get things accomplished. These days, to a larger degree, it means accepting help. That willingness to accept more help is playing a role in everything I do. The last three years are the first time in my life that I have had to accept help with my personal care. My funding source requires that aides be provided by an agency. While I have no choice in who the aides are, I still have the ability to direct them when they are in my home. For the most part, they have seen the value in using my routines and systems for getting things done. With most of them, I have developed a working but personal relationship. Sometimes I surprise myself at my willingness to accept help when I am out in the community. I find that I am more comfortable when I am going somewhere where I know people will be helpful. HOW TO PAY FOR THINGS
In my years as an advocate for people with disabilities in the State of Wisconsin, I was very involved in supporting the concept of people living in the community. There were many of us who advocated for a system that we call the Community Options Program (COP). It was designed to keep senior citizens and people with disabilities in their own community and homes. It took getting a Medicaid waiver, but the program has operated successfully for over a decade. This is the source of my funding and it pays for the aides, Meals on Wheels, and equipment. Over the years, it paid for an exterior ramp, bathroom accommodations, and more recently, it has paid for heating duct cleaning and furnace repair. The funding is very flexible and can contribute to almost anything that keeps people out of institutions. Currently, Wisconsin is experimenting with other ways of funding long-term care, so it is possible that the flexibility will not be maintained. Five months later, as I read what I had written, it seems that I was cruising ahead a day at a time. While describing the ways I have been coping with changes in my abilities in the last few years, I was sharing more of the “how” of my life lived with CP. As in all my writing, I was hoping that my readers would find something to help them in their “Journey into Aging with CP”. Little did I know that there was a “Stop” sign just around the corner. What was around that corner and how I’m dealing with it will be the subject of the next chapter. See you around the corner!
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