Cerebral Palsy
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Adult experiencing declined mobility problems

Begum_ABegum_A Member Posts: 3 Listener
hi, 
I am 20 years and have recently experienced a decline in mobility. I used to be able to hold on furniture & walls and walk but I now suffer from knee pain & am unable to walk, I have to sit on my bottom whilst coming down the stairs. I also get frequent muscle spasms. Has anyone else experienced these problems?

Replies

  • Richard_ScopeRichard_Scope Administrator Posts: 2,245 Scope community team
    Hi @Begum_A
    Thanks for your post and welcome to our community. I have experienced very similar problems to you as I have gotten older. Unfortunately, because of the added strain that we put on our bodies, we do tend to experience more discomfort as we age. 
    There are some things that I have found helps me. Swimming is very good and regular hot baths.
    Have you contacted your doctor about the knee pain? I would also ask for a referral to see a physiotherapist. Regular stretches can be beneficial too. 
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Begum_ABegum_A Member Posts: 3 Listener

    @Richard_Scope
     Yes GP has referred me to general physiotherapist who is not a specialist in CP! I am currently attending block treatment sessions @ the boabath centre, the neuro physiotherapist has said it is related to the spacticity in my muscles.
    I am a person who has regular hot baths!
    However I am finding it very difficult to adjust towards using my chair when going places (within homes) particularly indoor environments as I used to be able to walk until the last few months!
  • Richard_ScopeRichard_Scope Administrator Posts: 2,245 Scope community team
    edited June 2018
    It can be very difficult to find a general physiotherapist who is a specialist in CP. www.Physio.co.uk have physiotherapists that are experienced in treating adults with cerebral palsy. 
    Adjusting to being less mobile is very tough. You have to give yourself time. Once you have begun your physiotherapy regime you may see an improvement. 
    I'm always here to chat :)
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • nicebootsniceboots Member Posts: 195 Pioneering
    Hi I’m in my early 30s and noticed a real decline in my mobility in my mid 20s. Physio and orthotics have helped me to slow down the decline, I went back to wearing splints, which helps, I’ve also started taking baclofen at 26 - that has really taken the edge off the muscle tightness and spasms. One thing that has really made a huge difference is going to the gym, I do a good mix of cardio and strength training. I have managed to reduce the amount of meds I take, I used to take up to 75mg of baclofen, on weeks I stick to my gym and stretching routines I take 40mg. 20 in the morning to get me going and 20 before bed to help me relax and get a better nights sleep.
  • Begum_ABegum_A Member Posts: 3 Listener
    @niceboots Wow that is inspirational! Are you able to walk at all? Was balcofen prescribed by your GP? Also do you attend a disabled friendly gym with equipment suitable for wheelchair users?
  • nicebootsniceboots Member Posts: 195 Pioneering
    Thank you @Begum_A I walk independently, although I do use a stick when I’m going to be walking a lot or over uneven ground. My baclofen was prescribed by my gp and I saw a neurologist to look into other spasticity management options when things got really bad. They couldn’t really do much for me, so referred me back to physio after upping your baclofen. The physio I was referred to came up with a stretching routine that suited me better, recommended I started going to the gym and liaised with orthotics to get the right combination of day and night splints to compliment the other things I do. I also had a course of hydrotherapy, which really helped too. The gym I use is fairly disabled friendly, although it is on two levels, but the staff are really helpful. I’ve never seen full time wheelchair users using the equipment, but there are a couple of people that transfer from their chairs onto equipment and onto weights benches.
  • Richard_ScopeRichard_Scope Administrator Posts: 2,245 Scope community team
    Hi @Begum_A

    Unfortunately far too few fully inclusive gyms but this database can sometimes help to find them:

    http://www.activityalliance.org.uk/get-active/inclusive-gyms


    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • nicebootsniceboots Member Posts: 195 Pioneering
    That’s true @Richard_Scope, there’s a huge lack of facilities and knowledge when it comes to getting people with disabilities active. I believe that the fitness industry is failing those that would benefit most from being included, with relatively little change/expense on the part of gyms and trainers. 
    I’m lucky that I’m fairly mobile and can access the gym independently, I do feel for those who can’t because exercise can be life changing.
  • Richard_ScopeRichard_Scope Administrator Posts: 2,245 Scope community team
    It does continually surprise me, as above all else the fitness industry is missing out on a potentially huge revenue stream!
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • nicebootsniceboots Member Posts: 195 Pioneering
    I personally think healthcare professionals can do more to encourage people with disabilities to take part in exercise. GPs have access to the exercise referral scheme, but I think it’s underused due to the criteria being mainly for people with weight related issues. I think it should be extended to cover various health conditions, both physical and mental. In the end it’s going to save the struggling NHS a load of money! Exercise is proven to help with all sorts of conditions and from my personal experience it has helped no end. 
    I consider myself to be fortunate that a physio I saw believes strong in the exercise benefits for people with cp in particular, an approach that is still not widely used.
  • AndMacAndMac Member Posts: 27 Pioneering
    I agree re the benefits of exercise for CP.. I have hemiplegic CP, and osteoarthritis of the left (CP affected) hip.  I got a gym referral a few years ago, when I was looking for exercise to strengthen my muscles, (other than cycling.). Osteoarthritis had made floor -based exercises very painful. They still are.

    Prior to arthritis, I had done half an hour of gym mat based exercises every morning, from the age of 35 onwards, until I was about 43. Then I got cellulitis, followed by severe tendonitis. My achilles tendon issues lasted for years. I had physio, but it was of limited help. Well, none actually.  So floor based exercise went, as I couldn't stand without  padded shoes.

    Arthritis then started to get a real grip.
    I went for help, and got a gym referral from my doc.
    The problem at the gym was that the only gym equipment I could use easily was basically  exercising muscles in the same way that I did at home, with small variations.
    I cycled down to the gym,
    One of the few bits of equipment I could use, due to balance issues, was the exercise bike. So, I duly did...

    However, I had to make sure I left myself with enough energy to cycle the mile home...!
    ..
    I paid a reduced sum to use the gym, and I used it a few times, but then realised my limited time and energy was probably better spent just going for a bike ride,
    I work from home, and time is also money.

    If the gym had had more equipment that I could have used, I would have probably continued going.
  • WaylayWaylay Member Posts: 888 Pioneering
    I purposefully moved a lot closer to the hydrotherapy pool at the hospital in my town. A month later they closed it - budget cuts. *sigh*
  • VickyNolanVickyNolan Member Posts: 1 Listener
    I'm so glad I'm not the only one! I've just turned 30 and the decline has been rapid.... pain, sudden fatigue and very frequent trips and falls. Finally bit the bullet and bought a 4 wheeled walker and coming round to the fact I might need to slow down but it's so hard to accept. Wish Drs or physios would have told me what to expect later in life when I was under their care
  • Richard_ScopeRichard_Scope Administrator Posts: 2,245 Scope community team
    Hi @VickyNolan

    Good to meet you and welcome to our community. My mobility has changed quite significantly too. As I have mentioned earlier in the conversation, there are steps you can take to slow any deterioration in your mobility. Has your G.P. suggested any of these?
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Colabear21Colabear21 Member Posts: 8 Listener
    Hi I have Hemiplegic CO I didn't find out til I was 29 now 43, was diagnosed from young age but we were never told. My mobility has deteriorated substantially over the last few years.  I have osteoarthritis in my foot and both of my knees, had a partial foot fusion 2 years ago and am awaiting knee replacement with tibia realignment on my left knee.  I have recently been diagnosed with tendonitis of the Achilles tendon and am having platelet injections next week.  Just wondered if anyone else had had this done I am looking for an idea of what happens after and how long is recovery, I know it is supposed to be very painful and i cannot take anti inflammatorys for a while after.  Many thanks in advance 
  • kimdyer18kimdyer18 Member Posts: 52 Connected
    Begum_A i totally understand what your going through im 27 just found out i have spasptic parglia effect walking muscle spasms. and not i dont work from it 
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