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Advice Please on Growing Older With CP

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Madtricyclist
Madtricyclist Community member Posts: 6 Connected
in Cerebral palsy
Hi I am an active 49 year old with CP Dipledgia which affects both my legs.  I have never used a wheelchair and only started to use a walking stick in 1986 when I left home.  I now use two walking sticks to get around as the muscles in my legs are very tight and I need more support to walk.  Since 2012 I have been using Orthotics in my shoes which have helped to reduce the pain in my knees. Last year I also started getting pain in the top of my leg when I sit for long periods of time so now I find it difficult to sit comfortably and when I get up to move I am so stiff I can't move.   I have been seeing a brilliant physio on the NHS but can only get 6 weeks treatment at a time which we spread over a period of months.  I find these sessions really useful but wish I could go every week.  I cycle my tricycle to work every day and use it at weekends and I swim once or twice a week too so I keep active.  I already take Baclofen only 10mg x3 a day as it makes me sleepy and as I have a full time job I need to be awake!  Would it be worth trying some splints maybe at night to give my hamstrings a stretch while i'm a sleep? If there is anyone out there of a similar age to me with any tips on how to deal with CP and getting older  then I would love to hear from you.
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  • niceboots
    niceboots Scope Member Posts: 198 Pioneering
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    Hi I'm 29 and have diplegia cp, I have worn leg gaiters overnight to give my hamstrings a good stretch since I was quite young. I find a get a more relaxed nights sleep with them on as they really help cut down the spasticity in my legs and stops them moving into positions that get uncomfortable as well as getting a really good stretch. I also use them to help keep my legs where I want them whilst doing my stretching routine.

    I get pain in my thighs and hips when I'm sat down for long periods too (great as I do a desk based job!!) I have found stretching before and after work really helps, especially spending 15-20 minutes laying on my front after work, to hep stretch out the front of my hips.

    I see a physio for six week blocks a couple of times a year, but like you I would like to be able to see a physio more regularly, but unfortunately it's all down to nhs budgets! I have found a local Neuro physio, but at £30 an hour it's a bit pricey!! I self manage as much as I can by keeping active depending on my work pattern and energy levels, I go to the gym a couple of times a week when I can, which I find really helpful in managing my fitness and mobility. I also cycle occasionally.

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  • wendybem
    wendybem Community member Posts: 6 Listener
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    I have cp diplegia, I am 52 years old .
    I had my hamstrings cut and stretched in 2012. I am no longer a toe walker
    i now have both my heels on the floor for the first time in my life 
    just had an operation to straighten 4 toes on my right foot 
    I get pain in my hips if sitting for a long time ,also I can't lie in bed for a long time as hips start to ache not doing any stretching as not  been advised to do any.
    i don't have physio, just waiting for pins to be removed . 
    I am only just learning about cp as have really just got on with my cp.
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  • Madtricyclist
    Madtricyclist Community member Posts: 6 Connected
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    Thank you so much for your responses to my question it's really good to know that I am doing the right things.  I will speak to my physio about the possibility of wearing some night splints as I really think they may help me.  I will also continue to do my stretches, keep as active as I can and just be ME! 
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  • naomi_97
    naomi_97 Community member Posts: 2 Listener
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    Don’t be afraid to use a wheelchair or aid to help you don’t be to proud to accept equipment that could help! I also have spastic diplegia and am fully reliant on my wheelchair not through choice! I would not be able to move without it so am grateful!  Also maybe try and speak to a doctor with regards to tightness in your muscles possibly a higher dosage or different medication keep up the great work with Pysio and hope things work out for you 
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