I stumbled across this forum tonight while looking for something else. After reading a few posts I quickly registered and thought I'd jump into the mix.
A little background is probably called for here: I'm a 36 y/o man (turning 37 later this month) with mild, hemiplegic CP of the left side. I was diagnosed early on at about age two or three and ran the gamut of PT, voice and occupational therapy. Wore all forms of leg braces including both legs to the hips up until age 7 or 8 when I simply got disgusted with the constant sores and related problems and refused to wear them ever again.
In any case, I was blessed with a wonderful mom who never let me depend on the CP as a crutch for not being able to do things. Like everyone else here, I compensate where necessary and have good days and bad. Lately, there have been a lot more bad days and finding this Forum was a Godsend.
I've held steady jobs since I was 16, went to college, married a wonderful woman who became my best friend and until recently, had very few severe problems directly related to the CP.
I was injured on the job in '96 doing manual labor (lifting 50kg. buckets of carbide powder) and have since re-injured my lower back to the point that in June of 2002 I had a decompressive lumbar laminectomy and fusion of the L4 - L5 vertebrea. Here's where the CP becomes problematic: With the length difference in my legs of roughly 2" it seems to be, understandably, throwing my pelvis and spine out of alignment and causing fairly severe back and leg pain. My primary care physician misdiagnosed two ruptured discs (L4-L5 and L5-S1) as "pulled muscles" for six years before ordering the MRI that discovered the real problem, so now I'm left with permanent nerve damage. I know CP makes diagnosis of things like this difficult so I'm still not entirely sure how I feel toward that doctor (no, I no longer see him as a patient).
The orthopedic surgeon who performed my fusion finally gave up on treating the pain this past February and referred my to a pain management specialist who now has me on 40mg of Oxycontin twice a day - it helps some but not nearly enough and as a result, I've been out of work since June 18th. I'm currently awaiting appointments with both my neurosurgeon and orthopedic surgeon to see if they can ease the pain with another fusion at L5-S1, if not I'll be filing for disability benifits very soon.
I'm basically venting right now so please just take this for what it's worth. It's good to find people who actually KNOW what I'm living with instead of trying to deal with those who only think they do.
I know CP isn't degenerative but as I get older I'm finding out that just living a normal life takes its toll and the CP seriously aggrevates other problems.
First of all Flycatcher welcome...
As a man with CP, what the heck were you lifting those buckets for in the first place? I should talk, I bench pressed 450 pounds and ruptured myself at 17. You say you have mild CP? As you get older, is it still mild? CP by it's nature, makes it harder to do physical things like walking, talking, standing, sitting, running, climbing, lifting and many other things. Are you starting to see my poiint here?
You can probably apply for Social Security Disability, I worked steady for 37 years. I also was born with CP, and I personally never think CP is MILD!
Point taken musicmaker, I agree. As to why I was lifting that kind of weight: After college I went full-time at the bookstore I'd been working at and when I was ready to take a job where more money was possible, my Dad managed to get me an entry level position and the machine shop he worked in. Entry level in that field was as a press operator and very much manual labor. The average education of the guys in that shop was anywhere from 6th grade on so you can imagine the crap I took (we've all dealt with that).
Being in my mid-twenties and full of spirit at the time, I'd sooner push myself beyond my physical limits than ask for help or admit I couldn't do something. Plus, since my Dad was the one who stood up and vouched for me I wasn't about to fail and feel like I'd let him down. Because of that attitude I now have a left side hernia repair scar (from the bookstore actually), cervical disc trouble and a couple of lovely surgical scars in my lumbar area -- along with what could be career ending chronic back and leg pain. Nobody ever told me that the damage you do to yourself when you're young comes back to kick your butt when you start to get older. Anyway, I worked as hard as I could, earned several promotions and became the lead draftsman/CADD Tech at the plant until the day it closed down. I'm now a CADD Tech for the State Government.
I've spent the last couple of nights reading as many of the older posts here as I could and the information is helping to piece a lot of things together for me: I always thought my exaggerated startle response was a normal thing, didn't know that was a symptom of CP. I've also been dealing with some extreme fatigue lately that I'd just attributed to the stress of the back trouble or the pain killers but after reading several other posts I see that's not uncommon for any of us.
One question I do have now: I've noticed myself dropping things a lot more often over the last year when using my left hand. I'm not sure if it's just when I'm tired, I'm not paying close enough attention or the spasms are getting worse. I know my limp is much more pronounced as I reach exhaustion but would like to hear other's opinions, it's REALLY starting to annoy me.
I hope you folks will bear with me as I get up to speed again, I did as much research as I could on CP when I was younger but that was before the internet and I've forgotten much of the terminology.
I have my neurosurgeon appointment tomorrow afternoon so hopefully he'll say he can do something about this back trouble. Wish me luck guys!
Ok Jack,
there are many here with spastic CP including a life-long friend of mine that around the age of 40-50 have started to have increased trouble with spastisity and weakness in their arms, hands, legs and feet. I am 54 and although I have osteo-arthritis in the joints affected by life-long CP, I have not had trouble with muscle spasms since my last operation at 17. I once considered back surgery to lessen the lower curvature and pain I had after college. Physical thearpy and less walking finally got rid of the back pain. If I stand for long periods, my lower back aches...
I also find that my "limp" is more pronounced when I am tired, as in, I can actually notice it, when at other times I can't at all. It's also worse when I'm nervous, I assume because I tense up.
BUT I have been in a pool therapy/land therapy program for about two or three years (along w/other PT programs in the past) and my therapist recently showed me how I walked then vs. now. What a difference! I love the pool
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