Cerebral Palsy
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CP - Has your mobility deteriorated considerably as you've got older

NasmamuNasmamu Member Posts: 45 Connected
edited August 2017 in Cerebral Palsy
Hi.

I'm 38yrs old and have had Spastic Diplegia since birth (diagnosed at 2yrs old) I went from not being able to walk up until 6-7 to then being able to walk with crutches by 8-9 after surgery to then being able to walk unaided from about 11yrs old. Got discharged from my consultant at approx 17yrs as told nothing else they could do (a common theme with CP into adult life) did the whole College...University...Work...Marriage...Family etc. At the age of approx 30yrs the decline in my mobility took a nose dive. Constant pain in both legs, deterioration in balance, fatigue, increasing number of spasms. Falling 12-15 times a day. A truly horrendous time. The decline continued and I'm now 38 and right back where I started mobility wise (or lack of mobility wise) I'm now a full time wheelchair user. The pain in my legs is so bad I can no longer stand, need help with most things like dressing, bathing (help into bath) toilet needs etc. I don't even bother trying to put weight onto my legs anymore as the pain is unbelievable. Just wondering if there's anybody else in the same or similar situation than me. My arms still have decent functionality but even they now seen to spasm quite regularly. My weight has sky rocketed so can't even lift myself on or off a toilet with the help on somebody else anymore. Would be interesting to find out if anybody else is in the same boat? 

Replies

  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    Hi @Nasmamu I am sorry I didnt see this post earlier, how are you getting on?
    Scope
    Senior online community officer
  • AbigailAbigail Member Posts: 11 Listener
    So sorry to hear this. I have a son with CP and he is getting more spasms. Most recently in his face. I told the GP and he has been referred to the spasticity clinic. I hope there is a clinic like this in your area that can help you.
  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @Nasmamu.

    Welcome to our online community.

    Sorry that I didn't see your post earlier.

    How are things you now ???

    Do you have a GP that can refer you to a spasticity clinic in your area.

    I did work in a NHS Rehab Unit for just over 10yrs.

    They ran Spasticity Clinics every week patients in the West Midlands.

    Can you please let us know how you get on ???
  • ourvoicesourvoices Member Posts: 47 Connected

    Hi @Nasmamu,

    I know exactly what you mean - it can be difficult to come to terms with.  People don't always understand when you have a condition which deteriorates, that you can feel depressed about it.

    Sometimes I find that people expect you to just accept that you cannot do something you were previously able to do..... You need to use a wheelchair, what is the big fuss about (you were already disabled)?

    At the beginning of this year, my husband said to my consultant "But my wife could walk with a stick and without anything when we first got together".  My consultant's response was "patients with CP should expect to see a loss in their mobility as they get older".

    I felt like saying "Thanks, I'm not old and no-one has ever told me that - basically I'm doomed!"

    I am now using a wheelchair and I have to say that the pain is much better, but I still miss/want to walk around.  

  • the_velvet_girlthe_velvet_girl Member Posts: 103 Courageous
    I'm in my late twenties & I'm starting to notice a decline in my mobility. My legs get tired easily & I trip up more if I'm tired. I can only hope it's a slow gradual decline. I try not to think about the future too much.
  • hungryhippohungryhippo Member Posts: 2 Listener
    Hi nasmamu

    I have right-sided hemiplegia due to oxygen starvation during birth.

    I had an extremely tight right achilles so I could not put my heel down. I also was very clumsy. I had a decrease in muscle strength on the right side, trouble walking and fatigue. Limb pain was and still is a problem and I struggle to find words and articulate. In addition, I am slow to respond as I need time to process what I have heard and then put my mouth in gear.
    I grew up to understand that this condition is non-progressive, however I have worsened with age (I am now 51).
    I was treated twice (at 3 and 10) with two operations to lengthen the achilles, then later in life with a calf op and toe surgery.
    I did what you did (college, work, marriage, family) and managed reasonably well until the age of 40, when I was diagnosed, one after the other, with lifelong conditions like Myasthenia Gravis, Hormonal imbalances, including low cortisol, hypogonadism, hypothyroidism, absence of growth hormone, ocular migraine, diplopia along with the more mundane conditions like, nausea, dizziness, muscle spasm/ stiffness, skin infections, depression, joint pain, reflux, high BP, sleep apnoea, HF deafness.
    I often take 50+ tablets and other meds every day.

    My walking and general aches and pains have got worse, I use a scooter and am looking to buy a SP wheelchair. My balance is horrendous 
    I have fallen several times, the worst fall causing a spiral # to my right tib. I spent two weeks with it in hospital before I was sent to surgery, had an X fix fitted and spent 8 weeks in hospital overall with it. 

    So yeah, I think my mobility has worsened!!
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