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Muscle strains among older people with CP

paulabel
paulabel Member Posts: 3 Listener
edited January 7 in Cerebral palsy
Hi I'm 62 and a lifelong hemiplegic who has only recently become aware that the term "cerebral palsy" best describes my condition .

I've lived my life in denial so far, knowing that I'm physically handicapped but, unless people specifically ask why I walk with a limp, I like to pretend that they haven't noticed.

I've joined this discussion group to find out whether there are any experts (doctors, physios, or osteopaths) who are specialists in the treatment of people with cp who suffer the aches and pains of aging limbs. It is now very easy for me to pull a muscle in my weaker side just by walking upstairs. Do I just accept this as a sign of growing old and avoid climbing stairs whenever possible?

Or do I try to build the muscle in my weaker side to reduce the risk of accidental muscle injury? Physiotherapy has never really worked for me in the past, probably because I've never done it diligently. Do I give physio another try, our is it probably too late and a gentler lifestyle is more advisable?
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  • Libby_Scope
    Libby_Scope Posts: 757

    Scope community team

    paulabel said:
    Hi I'm 62 and a lifelong hemiplegic who has only recently become aware that the term "cerebral palsy" best describes my condition .

    I've lived my life in denial so far, knowing that I'm physically handicapped but, unless people specifically ask why I walk with a limp, I like to pretend that they haven't noticed.

    I've joined this discussion group to find out whether there are any experts (doctors, physios, or osteopaths) who are specialists in the treatment of people with cp who suffer the aches and pains of aging limbs. It is now very easy for me to pull a muscle in my weaker side just by walking upstairs. Do I just accept this as a sign of growing old and avoid climbing stairs whenever possible?

    Or do I try to build the muscle in my weaker side to reduce the risk of accidental muscle injury? Physiotherapy has never really worked for me in the past, probably because I've never done it diligently. Do I give physio another try, our is it probably too late and a gentler lifestyle is more advisable?
    Hi @paulabel :)        

    Thank you for reaching out and for sharing a little bit about your experiences. I'm sure some of our members will be able to relate and will hopefully share their thoughts and ideas about your scenario too. I understand that sometimes denial seems the best way to behave when dealing with chronic illness. I was the same when I was first diagnosed with mine, but I learnt to accept the situation and then actually overcome those unhelpful thoughts. It can be really hard at times, but support and communication makes things a lot easier. Do you have people who support you? :) 

    With regards to specialist advice, I would always encourage you to go to your GP and discuss any issues with them as they can potentially signpost you to the appropriate professionals. We do have a cerebral palsy (CP) category on our community, which outlines a lot of information about CP. Please see the category link here.  I will also move your post to our CP category, in the hope that our other members will share their experiences too.

    If you have any further questions or queries, we will do our best to answer them accordingly. 

    I hope you have a wonderful day,

    Libby
    Online Community Information Coordinator
    Scope

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  • Richard_Scope
    Richard_Scope Posts: 3,003

    Scope community team

    Hi @paulabel

    It's fantastic to meet you. You are not alone feeling like this. Ageing with CP is a new challenge for sure. I have quadriplegic CP and a wheelchair and since I hit 40, I have felt the changes in my mobility and energy levels.   

    There are things that you can do to help manage the changes in your mobility and pain. It sounds counter-intuitive, but exercise is very beneficial. Especially, low impact exercise like swimming. Any kind of movement at whatever level you can manage.  

    As has been mentioned us CP folk use up a lot more energy than non-CP people, up to 5 times more because of the way we move or walk etc, this can lead to fatigue and muscle strains. 

     
    The key is learning about your body and planning your day around that as much as you can. Plan the bigger tasks at the time you have the most energy etc.  There is also something called Post-Impairment Syndrome that is related to CP this refers to additional conditions that might be acquired by someone already living with CP. Here is an excellent blog post about it:  
    What Post-Impairment Syndrome Means to Me  
    What I would advise is that you book an appointment with you your G.P. (telephone appointments will work too) and talk to them about how your CP has changed. And getting a referral to a neurologist or neuro-physiotherapist. You can mention the CP Care Pathway which instructs G.P.s how and when to refer.  
     
    I'm pretty much always around if you would like to talk further. We're here to support one another. Don't feel alone. 

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • paulabel
    paulabel Member Posts: 3 Listener
    edited January 7
    Hi @Richard_Scope

    Thank you so much for your encouragement and support.

    I got to a point where I couldn't stand for more than about 15 seconds before the muscular aches became very uncomfortable. So I didn't want to go to a GP only to be put on pain-killers while a waiting perhaps months to see a specialist. My GP, who I've been seeing for about 20 years, has never seemed to be aware that I suffer from Cerebral Palsy (and I have had to self-diagnose my hemiplegia in the last 6 months). It doesn't fill me with confidence.

    Fortunately,  my muscular pains now seem to be on the mend following a visit to a private osteopath yesterday. The osteopath immediately realised that that the problem originates from a muscular spasm in my back which transmits pain to my thigh and calf. After about half an hour of spinal massage I've been able to stand without pain for up to three minutes, and I have got another appointment for a follow-up session in a few days' time.

    I don't want to tempt fate by saying that a full recovery is on the horizon: I'm just much more positive,  mentally - if not yet physically. Happy days .......

    To change the subject slightly, I'd like too pick up on your suggestion about swimming. I love spending time in warm water and feel a lot better afterwards. However, I find myself incapable of swimming more than about 25 metres without getting fatigued and progressively sinking lower in the water. I used to swim up to, say, 300 metres but this was a struggle and I didn't genuinely enjoy it. 

    Although I learned to swim semi breast stroke, semi doggy paddle from a young age, I was never taught how to swim better in view of my disability.  I just don't get sufficient propulsion from the left side of my body to stop sinking and exhausting my right side quickly. I'm also a bit embarrassed at being so slow in the water, and holding up other swimmers when sharing a lane. Flippers offer me a solution but their use is usually forbidden in public pools during normal sessions.

    Do you know of any "Learn how to improve your Swimming Technique" specifically aimed at people with hemiplegia?  Or do you know of any instructors with this expertise?

    I look forward to hearing from you.
  • Richard_Scope
    Richard_Scope Posts: 3,003

    Scope community team

    edited January 10
    One solution that I am aware of is using a small flotation device on your affected side. This helps to keep you level in the water something like this:
    10 Best Floaties And Floatation Devices For Adults Who Can't Swim Of %current Year% | In Smooth Waters
    In terms of improving your swimming technique and instructors, I would suggest contacting Swimming - CP Sport | Cerebral Palsy Sport
    As with most things when you live with CP, repetition and slowly building yourself up physically will get results. I am heartened to read that you are feeling more positive! 

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • paulabel
    paulabel Member Posts: 3 Listener
    Thanks Richard

    I have emailed CP Sport to see if they can recommend a swimming instructor in my area.

    kind regards  Paul

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