One Person's Journey into Aging with Cerebral Palsy

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One Person's Journey into Aging with Cerebral Palsy
By Maureen Arcand
October 2003


Wisconsin Council on Developmental Disabilities
600 Williamson Street, PO Box 7851, Madison, WI 53707-7851
608/266-7826 FAX 608/267-3906 TTY 608/266-6660
Email: *hfswiswcdd@dhfs.state.wi.us Internet: www.wcdd.org

This paper was funded by the Wisconsin Council on Developmental Disabilities (WCDD) using federal funds provided under P.L, 106-402 through a grant authorized by the Administration on Developmental Disabilities and the U. S. Department of Health and Human Services. The information herein was compiled pursuant to the State Plan on Developmental Disabilities. Grantees undertaking projects under Council sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions expressed do not, therefore, necessarily
represent the official position or policy of the Wisconsin Council on Developmental Disabilities.

Presentations and reports are based on research done through the Rehabilitation Research and Training Center on Aging with Developmental Disabilities (RRTC), University of Illinois at Chicago which is funded by the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Research (Grant No. H133B980046).

A listing of available publications can be found at the RRTC web site. Many can be downloaded at no cost. Web site, http://www.uic.edu/orgs/rrtcamr


One Person's Journey into Aging with Cerebral Palsy
By Maureen Arcand
My journey with Cerebral Palsy (CP) began the day I was born and continues as I approach my 75th birthday. The journey into aging began in my early forties, but then I did not see it that way. Like people with disabilities caused by CP before me, I did not expect to live to grow older. Now it has become important to me to recall the ÏhowsÓ and ÏwhensÓ of the aging process and their impact on my abilities and my life. This attempt to record my experiences is being made in
the hope that other people with CP can benefit from knowing something about what has happened to me over the last thirty some years.

A description of my disability seems appropriate. Because CP is so individualized and can be so different from person to person, it may be helpful for readers to have some understanding of the degree of disability I have lived with. For my purpose here, the cause and growing-up years are not so important, so where I was at age 40 seems to be the place to start.

My disabilities are all physical but not severe. All four of my extremities are to some degree affected, as is my balance and coordination. I have walked unaided since the age of three and have always found ways to do what I needed and wanted to do, including all self-care. At age forty I was a working mother of six children, a homemaker, and a community activist. As a divorced single mom and homeowner, I was responsible for all decisions. Physically, I was able to walk six to ten blocks, type (always with one finger), cook and bake, care for my children, and maintain my home. My speech was very understandable, and had in fact improved as I became more involved in community affairs and spoke in public.

This was my life at age forty and the background on which symptoms of aging would begin and gradually impact my life. My energy remained high, but between the ages of 40 and 45 there began to be signals of coming changes. The first was a fall in front of a bus I was running to catch. That convinced me that I couldn't run anymore, and accepting that was a psychological turning point for me.

The year I turned 45, I began to experience neck pain with pressure up into my head. I know now that it was the beginning of the deterioration of my neck and its muscles from years of involuntary head motion, but then it felt like something was growing at the base of my skull. Doctors could not account for the pressure until I sought out a chiropractor.

I had never forgotten that it was chiropractic care that got me walking as a child, so going back to it seemed logical. It proved to be a wise decision for me, and I have been treated in the same clinic for almost 30 years. The original finding was that the pressure in my head was because my upper spine was pushing upward.

After a few adjustments, the pressure was released and the pain subsided. However, there was the recognition that the process of deterioration and the development of arthritis had begun. The chiropractor and I were committed to slowing down the process. Twenty years ago when my head began to pull to one side, we developed a series of neck exercises which, along with adjustments as needed and other interventions, have significantly delayed the process.

I want to stress that change has been gradual and at times barely detectable. Because the physical change was so gradual it did not inhibit my ability to fill my life with good and meaningful activities. I saw my children grow into adulthood and welcomed the arrival of grandchildren. There was a series of full time satisfying jobs, one of which began at age 55 and from which I retired from full time employment after nine years. My community activities continue to this day and included six years as an elected County Board member.

Over the years, I realized that all the parts of my body that had always been affected by CP were responding to the aging process. The response in onset and severity were different from one bodily function to another. There have been occurrences that were occasional, while other functions stayed at a certain level of ability for a long time before declining to another level and staying there.

An example of an occasional occurrence is the locking of my jaw. The first time was in my early 40Ìs, and was a very frightening experience. My mouth would not close, there was significant pain, and emergency room staff was not sure how to deal with it. Since I could not close my mouth, swallowing was difficult, and I was afraid of choking. The experience made me realize that for me, swallowing was not as involuntary as it should be, and is almost impossible with my mouth open. The locking of the jaw happened only five times in twenty years. I have learned to
sense a misalignment and have it adjusted by the chiropractor.

Swallowing, tongue movement, and chewing are functions of the mouth which have changed, gradually staying at certain levels for extended periods of time before declining again. I found it important to view these functions together because they all contribute to the possibility of choking and the quality of speech. For me it has meant that moving my tongue, whether to form words or move food around in my mouth, has become harder work. I am less able to control my swallowing, so I drool more, and food can slip down my throat before it is properly chewed.
The acknowledgment that this puts me in danger of choking has forced me eat slower and find ways to dislodge food from my throat.

The impact on my speech becomes more and more of a concern. I did not pay close enough attention when it first began to become harder work to form and get words out. People said they couldn't tell the difference, and under certain circumstances it was more understandable. At one point I rejected the suggestion that I have speech therapy. Presently, I can see people having more difficulty understanding me.

A recent consultation with a speech therapist indicated that the major factors are my breathing and tongue control. I must slow down and take breaths more often. Pausing briefly allows me to swallow and for my listener to catch up with what I'm saying. I have begun tongue exercises in the hopes I can gain some control. That would help both the speech and the movement of food in my mouth. I am finding the idea of being better understood and maintaining my speech are real motivators.

There is one part of the mouth I haven't mentioned---the teeth. I learned the hard way that because of a lack of hand coordination and strength along with an active gag reflex, I had not taken adequate care of my teeth. By the age of 60, I had a serious gum infection, the cure of which was very costly, and brought the realization that should I lose my teeth, the gag reflex would prevent me from keeping a plate in my mouth. At some expense I have maintained my remaining teeth, and am determined to keep them.

As I have stated, my first realization of change was in my ability to run. It was a foreshadowing of the gradual but persistent loss of balance and endurance. Walking is one of those functions which stayed much the same for even a number of years before declining to another level. The loss of balance, which increased the tendency to fall, was always the most obvious change. At age 64, I began a warm water exercise program designed by the Arthritis Foundation. It really
slowed down the loss of balance and helped keep my legs strong enough to prevent some falls and enable me to get myself up when I do fall. In acknowledgment of what was coming, I did get a walker at age 70, using it first only when I walked distances. Use of the walker has increased gradually since. I seldom use it in the house, but use it more and more away from the house.

Hand strength and coordination is another example of gradual levels of decline. My hands have also been impacted by the Arthritis in my neck and a rotator cuff injury sustained in a fall in my early 60Ìs. The warm water routine includes finger and wrist exercises, which have proved very helpful. My own ability to find less stressful ways of doing things keeps me typing, cooking, and taking care of myself.

In all my conversations with other people with CP, I find that the last things they want to talk about are what I call internal bodily functions. Most of us must admit that our breathing, digestion, and bowel and bladder control involve muscles, which are affected by the CP. The reality of that becomes more obvious as we age. In my early 50Ìs I began having repeated bladder infections. The Urologist kept telling me I didn't empty my bladder, to which I always wondered if my bladder was spastic. To make a long story short, it took him four years to tell
me I had a spastic bladder and to prescribe Oxybutynin. I've been taking it ever since, maintaining satisfactory control and eliminating infections.

Most of my life I have had some sense that the muscles of my bowel were affected, but it was never a real problem. I was in my late 50Ìs when I had my first full-fledged attack of irritated bowel. I have had to learn that certain foods are irritants, which can cause pain and diarrhea. I suspect this may be ndividualized, but for me, some foods don't bother me unless I eat them at successive meals. Apparently, Oxybutynin is often prescribed for irritated bowel, but doubling
my dosage to take care of both the bladder and bowel produced a severely dry mouth, which affected my speech. I rely on careful eating and over-the-counter medications when it does happen.

When I experienced a shortness of breath after age 65, a breathing test uncovered the fact that my lungs fill only to 75 per cent of their capacity. It has not proved to be a problem, but I am sure again that it is because of muscles affected by CP. It may be that as all my muscles slow down, the breathing can keep up.
I have mentioned some interventions that have helped me, but I should also say that I have made accommodations along the way. Since I lost strength in my arms and legs, I have had a raised toilet seat and a motorized recliner. These and the walker are for my safety and comfort. There are lots of smaller things and I know there will more in the future.

As was my intent when I started this, I have attempted to describe changes in those abilities affected by my CP. My desire is not to frighten people, but to alert them to the fact that the aging process does have a somewhat different impact on people living with CP. For each of us, CP is very individualized, so it becomes important that we know our own bodies, abilities and disabilities, so that we can be aware of change. This will enable us to work with those around us
to make accommodations as they become appropriate for us.

UPDATE:
Recently I have had a peek at the future. It was set off by a bladder infection which I denied having for a couple days. It weakened my whole body, affecting my balance and coordination, and resulted in a fall from my bed. I was unable to get myself up and had to call for help. The antibiotics given me for the infection made me sicker and further affected the CP-affected functions. With a change in medication, it took about ten days to restore balance and coordination. As it was coming back, I saw the Neurologist, who told me that any illness might trigger that kind of a loss.

This series of events has prompted the elimination of some barriers in the house and the addition of some safety measures, including Life Line, which would allow me to push a button worn on my person to call for help. It stimulated family discussions of alternative ways of doing things and of possible care options in the future.