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Cerebral Palsy Message Board

Cerebral Palsy Board Index

I am new to this board so forgive me if this is a topic that has been thoroughly explored in the past. I am in my early thirties, with what I will term a "mild" case of cp. (I am ambulatory, gainfully employeed, and I do not require any assistance.) My primary symptoms are spasticity, muscle aches, occasional pain & discomfort, and an affected gait. I am on my first (less than a year since implanted) baclofen pump.

As the title of this post suggests, I seem to be experiencing a worsening of symptoms (increased spasticity, intermittent muscle weakness). My understanding of cp is that it is a "non-progressive" condition. Put differently, my brain won't become more "injured" unless I suffer an additional form of brain trauma (head injury, stroke, etc). Worsening symptoms, on the other hand, seem to be a different matter. I've not seen anything that would indicate that my symptoms *won't* increase as I age. I've always expected that having cp would cause increased "wear-and-tear" on my body as compared to the general population.

Since I've always understood cp to be a "static" condition these increased symptoms are a bit disconcerning. I wonder if this distinction is a bit too nuanced for a majority of physicians.

As a related statement, I am none too pleased that there seems to be a lot less information regarding adults with cp than there is regarding children with cp. It seems to me - and I hope I am not being too cynical - that the profit motive for treating adults with cp is less since the level of advocacy is much less. To give an example: I had a neurologist tell me that he was "oh so sorry" to inform me that he could do no more for me than to treat me with oral antispasmodic drugs. Intrathecal Baclofen was then an approved treatment. Botox injections (which I've since received) were in widespread use. At the time I was not aware of either treatment.

Self advocacy has led me to the more involved treatment I am currently receiving. I am exceedingly fortunate (and also exceedingly grateful) that Big Insurance has not been a gatekeeping hindrance towards receiving the best and most appropriate treatment available to me.

I will see my neurologist in one week, and I'd love to be armed with some feedback going into that appointment. Thanks!

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