The Challenges of Middle Age With Cerebral Palsy and Hypersensitivity

It is hard to believe I am now 49 and staring at my 50th birthday approaching March 14, 2018. How did this happen? Yet I feel every one of those almost 50 years in ways many do not. Most days this physical body feels more like it’s 90 years old rather than 49.

I have spastic diplegia cerebral palsy and began to notice really weird changes as I got older. It’s known as post-impairment syndrome, but some in the medical community do not acknowledge it. The reality is that there are currently 17 million people living in the world with cerebral palsy (in all its forms). Many are adults who are aging and trying to deal with the symptoms of this syndrome, which usually begins to manifest in the late 20s.

I am not talking about the chronic pain, chronic fatigue, osteoarthritis and loss of mobility or increased severity and frequency of muscle spasms. I am also not talking about the swallowing difficulties, chronic cough or weak lungs that are all secondary complications found in this syndrome and ones I deal with every day. The medical community needs to at least begin acknowledging these chronic symptoms, even if there are no current treatments.

In the last five years, I have encountered one complication I really was not expecting: extreme hypersensitivity.  I am not talking about mood swings; I am talking about extreme sensitivity to physical touch. This has surprised me more than anything else, as it was never a problem when I was younger.

Have you ever had a single hair fall from your head and land on your arm with a thud?  Well I have and it happens multiple times per day!  I am completely serious, hypersensitivity has got to be one of the most uncomfortable parts of my post-impairment syndrome and the hardest to explain to people, especially those closest to me. Imagine being severely startled every time your husband or wife touches you lightly or tries to whisper sweet nothings in your ear. This is not good when you have no standing balance! Now, I know people with CP still have their startle reflex, but this hypersensitivity makes it 100 times worse. It also does nothing to help the intimacy in a marriage — enough said.

I am not impressed!

My struggle with hypersensitivity is not something I have discussed with a lot of people. I suspect I am not alone, so now is the time to speak out. Serious funding needs to be put into research on CP and aging with subsequent treatments for post-impairment syndrome being developed and made available. All medical students need to study CP in depth (from birth through adulthood to old age) in order to provide adequate care, which is sadly lacking at the moment.

Seventeen million of us are waiting, and we cannot do it alone. My generation may not see the benefits, but the younger generations behind me must.

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Thinkstock photo by Ingram Publishing.

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