Resources on Cerebral Palsy (CP) are primarily focused on children. There is a good reason for this, as most children are diagnosed by the age of three, have growing bodies, and need to be accommodated accordingly depending on the severity of their CP; however, once you turn twenty-five, there is an odd drop-off. There is no continuum of care for adults with Cerebral Palsy, and although care for adults is expanding, it is still very difficult for adults with CP to acquire good care. As adults we deal with issues like Degenerative Disc Disease, and Premature Aging, to just name a few. This is primarily because the biomechanics of our body are somewhat atypical to the average, able-bodied person.
For example, I have a leg-length discrepancy in my left leg. This was only found within the past three years, and I will be turning 30 in 2018. The solution for this is a lift on my leg brace (it essentially looks like my brace has a heel) and stretching, accordingly. While this is all good and fine, when I asked my doctor who diagnosed me what I could do about my Degenerative Disc Disease, she somewhat tongue-in cheek suggested that I not get old.
Therein, of course, lies the issue. Because of how our bodies move, lack of range of motion, and muscle tightness (with Spastic CP) we are essentially set up for our bodies to start taking a dive on us long before we are prepared for it. The biggest thing that I could suggest is to never be afraid to advocate for yourself. You know your body better than anyone else. I saw a myriad of different specialists before I was diagnosed with a tight IT band and a knee contracture. I had surgery to release the muscle, and my surgeon said that when she attempted to lengthen it, it audibly snapped. Before I got the opportunity to have surgery, I endured several injections in my left hip, and left sacroiliac joint. Only one out of three of those injections (One in my hip) made a difference, and it only lasted me a few days, when it should’ve lasted several months.
Even though I eventually found (what I still only feel is a single part) of the entire set of pain issues I am facing, it shouldn’t have taken me three years to get a proper diagnosis. We need to advocate for ourselves and encourage our communities to invest in continuum of care, not only to better our quality of life, but to remind physicians that those of us with Cerebral Palsy are living longer lives, and we deserve far better.
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