The Challenges of Being an Adult with CP

I stumbled upon this article from Disabled World that validated almost my whole life. I thought I’d share it with all of you. I don’t know if any of you with CP or other disabilities feel like you’re constantly having to defend yourself like I do, but with the lack of information for adults with disabilities, I wanted to share this golden article. It is aimed specifically at cerebral palsy, but having friends with other disabilities, I know that  questioning what you’re going through, as well as having others question what you’re going through, is pretty common throughout the disabled community.

Under each section, I’ve noted my own experience in that area.

Here is the article’s URL:

http://www.disabled-world.com/artman/publish/health-challenges.shtml

“Before the mid-twentieth century, few children with cerebral palsy survived to adulthood. Now, because of improvements in medical care, rehabilitation, and assistive technologies, 65 to 90 percent of children with cerebral palsy live into their adult years.

Before the mid-twentieth century, few children with cerebral palsy survived to adulthood.

It is amazing, and sad in a way, to think that if I had been born 100 years earlier, I might not have survived to adulthood. Because my CP doesn’t adversely affect the functions that keep me alive, such as eating and breathing, I think I might have survived. But my quality of life would be horrible. I think of all the surgeries I’ve had, and how if I wouldn’t have had them, I wouldn’t have use of my legs at all. I probably would have completely lost use of my legs at a very young age.

Now, because of improvements in medical care, rehabilitation, and assistive technologies, 65 to 90 percent of children with cerebral palsy live into their adult years. This increase in life expectancy is often accompanied by a rise in medical and functional problems – some of them beginning at a relatively early age – including the following:

I have my fair share of medical and functional problems. It’s nice to see that it is actually real and normal for someone with CP to experience this.

Premature aging. The majority of individuals with cerebral palsy will experience some form of premature aging by the time they reach their 40s because of the extra stress and strain the disease puts upon their bodies. The developmental delays that often accompany cerebral palsy keep some organ systems from developing to their full capacity and level of performance. As a consequence, organ systems such as the cardiovascular system (the heart, veins, and arteries) and pulmonary system (lungs) have to work harder and they age prematurely.

Functional issues at work. The day-to-day challenges of the workplace are likely to increase as an employed individual with cerebral palsy reaches middle age. Some individuals will be able to continue working with accommodations such as an adjusted work schedule, assistive equipment, or frequent rest periods. Early retirement may be necessary for others.

After being accused of being lazy, uneducated, unintelligent, entitled, and a liar, and the list keeps going, it is nice to see this also. I hear this not only as an adult who can’t work, but when I was a child in school as well.

I was lucky enough in my last job to work at a place that was more than willing to make accommodations for me. My boss gave up her desk so I wouldn’t have to stand, I tried working from my wheelchair, and even though we had a business casual dress code, I was allowed to just wear sneakers. After everything, the pain and fatigue was still overbearing.

I specify ‘at my last job’, because I’ve worked at plenty of places that were not willing to make accommodations, such as letting me sit on a stool instead of standing. I’ve been denied jobs and positions because of my disability, and I know others who have had similar experiences.

Depression. Mental health issues can also be of concern as someone with cerebral palsy grows older. The rate of depression is three to four times higher in people with disabilities such as cerebral palsy. It appears to be related not so much to the severity of their disabilities, but to how well they cope with them. The amount of emotional support someone has, how successful they are at coping with disappointment and stress, and whether or not they have an optimistic outlook about the future all have a significant impact on mental health.

My experience with disability-related depression didn’t start until I started losing the mobility that I had. Having CP didn’t bother me as a kid. The bullying hurt, during the times it got really bad, but overall, I saw myself the same as everyone else. Losing my mobility and not being able to stop it has been a source of depression for me, because my life is not what I dreamed it would be. However, I believe that is only circumstantial. It might take a while, but I still dream and I still believe I can reach my goals. Like everything else I do, I’ll just have to find a different way.

Post-impairment syndrome. Most adults with cerebral palsy experience what is called post-impairment syndrome, a combination of pain, fatigue, and weakness due to muscle abnormalities, bone deformities, overuse syndromes (sometimes also called repetitive motion injuries), and arthritis. Fatigue is often a challenge, since individuals with cerebral palsy use three to five times the amount of energy that able-bodied people use when they walk and move about.

This point is actually why I found this article. I have been experiencing such extreme fatigue and weakness, mixed with pain that I feel like Superman strapped to Kryptonite. It makes me really sad when my kids want to play, but I can’t do anything but squeeze my pillow and try not to scream. That’s when the words hurt the most.

 Osteoarthritis and degenerative arthritis. Musculoskeletal abnormalities that may not produce discomfort during childhood can cause pain in adulthood. For example, the abnormal relationships between joint surfaces and excessive joint compression can lead to the early development of painful osteoarthritis and degenerative arthritis. Individuals with cerebral palsy also have limited strength and restricted patterns of movement, which puts them at risk for overuse syndromes and nerve entrapments.

I haven’t been diagnosed with these, because a lack of insurance keeps me from pursuing help, but I am convinced I have at least one of them.

Pain. Issues related to pain often go unrecognized by health care providers since individuals with cerebral palsy may not be able to describe the extent or location of their pain. Pain can be acute or chronic, and is experienced most commonly in the hips, knees, ankles, and the upper and lower back. Individuals with spastic cerebral palsy have an increased number of painful sites and worse pain than those with other types of cerebral palsy. The best treatment for pain due to musculoskeletal abnormalities is preventive – correcting skeletal and muscle abnormalities early in life to avoid the progressive accumulation of stress and strain that causes pain. Dislocated hips, which are particularly likely to cause pain, can be surgically repaired. If it is managed properly, pain does not have to become a chronic condition.

This has been my experience my whole life, and again, I am so glad to see this in writing. Even when I was a child and didn’t have the extent of pain that I do now, doctors and teachers would brush me off, and sometimes even accuse me of lying. As an adult, I can genuinely say that the doctor I have now is the only doctor who believes what I say and tries to help. All other doctors have treated me like I was just looking for attention or drugs (even before I knew there were drugs to help with pain), or told me I just needed to exercise more.

Unfortunately, I stopped getting preventive care at the age of 13. I think a lot of my issues now could have been prevented, but since I can’t change it, I just do what I can to take care of myself now. Somehow that’s not a very popular decision.

Other medical conditions. Adults have higher than normal rates of other medical conditions secondary to their cerebral palsy, such as hypertension, incontinence, bladder dysfunction, and swallowing difficulties. Curvature of the spine (scoliosis) is likely to progress after puberty, when bones have matured into their final shape and size. People with cerebral palsy also have a higher incidence of bone fractures, occurring most frequently during physical therapy sessions. A combination of mouth breathing, poor hygiene, and abnormalities in tooth enamel increase the risk of cavities and periodontal disease. Twenty-five percent to 39 percent of adults with cerebral palsy have vision problems; eight to 18 percent have hearing problems.

I do have an abnormal curvature of the spine (that was discovered along with the broken vertebrae I talked about in my last post). That causes a lot of my back pain. I also have abnormalities in tooth enamel, so, as a result of extensive, painful dental work at a young age, I am terrified of dentists. I am very, very thankful not to have hearing or vision problems.

Because of their unique medical situations, adults with cerebral palsy benefit from regular visits to their doctor and ongoing evaluation of their physical status. It is important to evaluate physical complaints to make sure they are not the result of underlying conditions. For example, adults with cerebral palsy are likely to experience fatigue, but fatigue can also be due to undiagnosed medical problems that could be treated and reversed.

The only regular visits I make to the doctor are to get my prescriptions refilled. He has mentioned a few times that some of my issues could be taken care of with a couple surgeries, but without insurance, he knows I cannot afford them. Hopefully soon that will change. Though surgery will be difficult, I would much rather go through a hard surgery and recovery and be free from some of these pains than to just hide them with medication day in and day out.

Sometimes I worry that my fatigue and weakness could be from an underlying condition that I am unaware of. Again, without insurance, I am not able to find out.

Because many individuals with cerebral palsy outlive their primary caregiver, the issue of long-term care and support should be taken into account and planned for.

At first I thought “This is something that I don’t have to worry about.” But then I realized how quickly I am losing my mobility. To me, the future is even more unknown than for others. I don’t know what will happen to my body down the road; if and how it will continue to deteriorate. Unlike most of the people this section is referring to, I am married, but what if something happens to him, or what if he passes before I do? Oh well, I guess that’s what we have kids for, right? 😉

One of the most frustrating things about being disabled is getting teased, made fun of, and denied friendship, jobs, and other things based on your disability, and then turning around and not being believed by doctors, teachers, and even family members about issues regarding that same disability.

I would like to note that I do not say anything in this post out of anger or self-pity. I say them because 8 or so years ago, when I started seriously having trouble because of my disability, there was no information or support. Doctors were rude and patronizing, and internet searches only led to articles about children with CP. I thought, “Children with CP turn into adults with CP, so why is there no information for us?”. I want all of you with disabilities to know that you’re not crazy, and you’re not over-reacting or looking for attention. This is real. If you feel it, it’s real. So take care of yourself. Search for answers, and don’t let anyone tell you you’re imagining it.

I also think it’s important for parents of children or adults with disabilities, or teachers, or doctors, or friends and family members, to be attentive to what that person is telling you. Take them seriously. Don’t baby them or try to remove every obstacle, that hurts more than it helps, but don’t brush them off.

I’ve also come to realize over the past few days, that these people who are telling me that I’m just not trying hard enough, that I should keep working or doing this or that in spite of my body, have never had a disability. They may have had to overcome difficult situations, apathy, or short term pain or fatigue, but they have not had to live the life of a disabled person day in and day out. They have never been unable to walk on a daily basis, or experience years of extreme, chronic pain and weakness, with no end in sight. They have no idea.

So why are they holding me to their ‘standards’? More importantly, why am I letting myself feel guilty about it?