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I'm a man in his 30s who has lived with mild spastic diplegia (cerebral palsy) all his life. Longevity runs in the family (all my grandparents have made it past 90 and one is working on 102). It recently occurred to me that I've never met an older person with CP, and I've started to wonder how this may or may not affect my life span.

Googling for this information is flat-out terrifying, since the population averages include much more severe presentations of CP than my own, so lack of mobility and difficulties with self-care significantly confound lifetime outcomes. I'm fortunate to be on the very mild end of the spectrum: muscle tightness in both lower extremities but no other involvement. I am fully independent and do not need mobility aides of any kind. Currently participating in regular PT to (successfully) counteract some increased tightness of late.

I realize this is a strange question to ask here, but there seems to be little information for people in my particular situation (perhaps an indication that I have nothing to worry about?). Any advice or insight from a PT or an older person living with CP would be especially appreciated.

closed as off-topic by Chris Rogers, DoctorWhom, LangLangC, Graham Chiu, L.B. May 1 '18 at 18:51

This question appears to be off-topic. The users who voted to close gave this specific reason:

  • "Questions requesting personal medical advice are off-topic here. Nobody here can properly address your health issues. Such questions should be taken to your personal physician who can examine you and access your full medical records. For more information, please see this meta post." – Chris Rogers, DoctorWhom, LangLangC, Graham Chiu, L.B.
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  • We could only respond with the same "typical" data, you are individual and as such need a personalised response that only your doctor could give you. – Gunge Aug 31 '16 at 15:25
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Having done more searching over the last month, I thought it might be helpful to others if I answered my own question. I came to three realizations:

First, this is like asking, "Dear Google, when am I going to die?" It's impossible to know for sure and it's unnerving to even ask.

Second, searching for "older people with cerebral palsy" on the internet is a tricky proposition. Suppose that a person is 80 today (in 2016), and living with cerebral palsy. That means he/she was born in 1936. Would a person with a mild CP impairment even have been diagnosed as such, given the social stigma? Unlikely. Would such a person be tech savvy enough to be posting on message boards? Also unlikely. Would such a person be posting specifically about CP? Extremely unlikely. Looking for such people is like hunting for unicorns.

All that said, this comment thread features several older people with CP chiming in. I also found a few scattered forum posts from people in their 60s and 70s living with CP. The oldest person I was able to find was Maureen Arcand, who wrote extensively about living with CP and lived to be 86, despite considerable mobility impairments. That's actually above the current US average life expectancy of 81.6 years for women.

Third, there has indeed been some research on this topic, though it can be hard to find. Hutton and Pharoah (2006) distinguish between cases with and without severe impairments, and found that in cases where there were no severe impairments (i.e., able to stand and walk, able to care for oneself, no comorbid disorders such as epilepsy), survival outcomes were similar to the general population. Strauss et al (2008) found that in their highest-functioning category, survival rates were slightly reduced compared to the general population, but they go on to caution that, "if a person's pattern of disabilities is at an extreme end of the range for a given group, their life expectancy may differ substantially from the group average." As Hutton says in this summary document, "A child who is mildly affected by CP can expect to have much the same length of life as a child without CP."

To sum up, for those of us fortunate enough to be on the extreme mild end of the CP spectrum, all available evidence suggests that the CP itself doesn't put a drag on our lifespans. If you go to Dr. Google, you can find CP resource websites claiming that CP "puts extra strain on the heart" or that people with CP "don't build up a reserve of energy when resting". That may be true in more moderate or severe cases, but it seems to be an unlikely risk factor for mild cases.

Will I live to be 101, like my grandfather has done (and, unaccountably, continues to do)? Probably not, but then, that's true for most people. Just like everyone else, I don't know how long I've got, but the research says my odds are just about as good as anyone else's.

  • CP is just like a brain injury. It depends. – Graham Chiu Apr 21 '18 at 21:31

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