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To walk or not?

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  • caitlind
    caitlind Community member Posts: 1 Listener
    Hi
    I know a lot of people may not agree with what i am about to say, but i think my experiences may help you decided what is best for you.
    I was diagnosed with spastic cp at the age of two, i am now 32,and all through my childhood and adolesence i was made to walk even though it was very painful one standing frame hurt me so much i used to pass out.
    I tried every new treatment for cp that became available, but still could not walk unaided, was in constant pain and was so unstable when i walked i got several concushions from falls. So at the age of 16 i made a decision that being able to put one foot infront of the other was not the big deal i hadbeen lead to believe. So i decided to start using my wheelchair and accept it. Because the pressure on my legs was lessened i was able to reduce the spasticity in my muscles using yoga streching of all things, my confidence and self esteem improved because i was no longer afraid of falling over and was no longer in unbearable pain, and i managed to get an education because i was not passing out all the time.
    Although i will admit i have taken some abuse from health care professionals( one neurologist inparticular) who believed me to be lazy and to have given up. I would rather use a wheelchair, and be indepentent with a almost pain free happy life, than wobbling around on crutches in agony so tired that i have to have carers to help me.
    I just thought would give you an insight into a alternative veiw point, as i think alot of adults with cp of my generation were brainwashed into thinking using a wheelchair is a bad thing. I look and feel more 'normal' now than i ever did when i was trying to walk all the time.
    Just bear in mind if you do start using your chair more, to find alternative forms of exercise, so that you don't seize up.
    hope things improve for you
  • mafala
    mafala Community member Posts: 71 Listener
    Hi Caitlin and Helen

    Caitlin, so many parents agonise about whether their children will walk or not and personally I think that some kids are pushed too far for the sake of their parents wish to see them walk and not in a wheelchair. I sometimes feel I should push my son harder and I feel pangs of guilt, but long time ago I decided that I'd rather he'd be happy in a wheelchair than in pain and walking. It's really good to hear your story as it makes me feel better for my decision not to push my son to walk.
  • panther
    panther Community member Posts: 251 Courageous
    Hi Caitlin

    Thanks for sharing your view point from the other side of this situation. Since starting this post I have had to start to use my chair more due to increased tiredness and more recently due to the affects of surgery last year.

    Because of that I can in some ways see where you are coming from and you are right there are somethings that are made easier in the chair. But I've also noticed that I'm often treated differently when I'm in my chair by people I meet when I'm out than I would of been if I hadn't been in my chair and that annoys me.

    I think at the moment I cope with having to use my chair more because I know I have a choice. I'm still can't say how I'd really feel if using my chair was the only way I had of doing things. If you've read my other post re bunion surgery you will see that there is a possibly of me needing my chair full time as they've said there is only a 50% chance of me still being able to walk after. And having seen what it did to one foot I'm really not expecting to be walking again when they correct the first lot of surgery and operate on the other foot later this week. And I'm still not sure how I will cope or feel about using my chair full time if that is the outcome.

    Take care

    Helen
  • Guest
    Guest Community member Posts: 1,968 Listener
    Hello
    Im new to this site, I just wanted to say I have identified with everything I have read so far. Im 43 with CP Diplegia. I have used a stick for the past 20 years and have modified my social life around using the car to drive everywhere and parking as close to the venue as it is possible to do. My friends and family know what Im like so they will usually drop me off and go and park if Im not driving.

    Although my walking has always been slow and hard work, I usually managed with rest stops. I guess it's fair to say that I have had intermittent sessions of physio well three or four in my adult years when I have had bouts of pain. (Knees lower back and feet usually) Massage used to help well it made me feel better even if the pain was still present.

    In fairness to my GP he has always been supportive ( I have three patients with CP you all know more than I do, but lets look at the options and see what we can do to help") Usually this involved anti inflammatory tablets, pain killers and a 7 week physio session complete with a sheet of do it yourself exercises. (Still have not figured out how to manipulate and stretch my own ankles while laying on the floor or bed, maybe I should have tried yoga first) In all honesty I don't think my GP had too many other options most of the time, unless I had gone in and said I want ortho surgery.

    Anyway over the past two/three years the pain and the fatigue have really started to stick around and anti inflamm tablets and ever increasing strength of pain killers did not seem to be working? I guess in the back of my mind I have always known things may deteriorate over time, but like everyone has said, in the 60's and 70's walking was the done thing, and CP well that's a non progressive disorder...

    I want to say I decided but I think the truth is, my body decided, that it was not going to do things anymore. Psycologically (spelling sorry) it was saying "you can continue to do the things you used to do, but Im going to make you feel every step and movement, and when you stop Im going to continue reminding your body of what you've done, and the next time you move and the next and so on and so on you will feel this energy sapping fatigue.

    With these odds I decided it's time to get a wheelchair (I have always used one for shopping in big shopping centres shopmobility, and going round Tesco's with a basket on my lap) but now it was time to get my own. All I can say is the sense of relief for me was worth all the self image issues. It's true some people look at you in a certain way, but after 39 years of comments and stares nothing has really changed. I have just adapted to a changing situation. ( The people I know family, friends and work collegues could not give a monkeys, chair sticks space hopper or rickshore if it makes life easier for me then go for it)

    Anyway, I went back to the GP and said OK I think it's time to meet up with someone who knows about CP and mobility issues, and there I was at the Nuffiled Oxford undergoing gait analysis. The report they sent me says they want to carry out three level surgery hips knees and feet (not really a suprise considering the head of the team is a surgeon by profession)

    Im due to have a meeting to discuss what's involved, if anyone has any info on rehab and physio avaialability post surgery, recovery period, level of support required and the benefits of going through the surgery or not as the case maybe I would welcome any feedback.
  • shazfromnorthampton
    shazfromnorthampton Community member Posts: 1 Listener

    Hi

    Last year I started using a scooter and i wish someone had told me about it before, I fell free exspet when its windy. walking has become very painful for me, I am 39 years old.

    Shaz
  • gillywilly
    gillywilly Community member Posts: 1 Listener
    It has been really interesting reading all of your comments. My son was diagnosed with CP diplega at 4yrs old he is now 12. We have also found out in the last few months that Josh has Hemiplega also which affects the right side of his body and that he has Scoliosis. He is also undergoing tests, 3 months ago Josh's right chest wall stuck out more than the other side . I was very concerned as it had not been noticed before.I took him to see his physio and paedatrician who told me that josh has always been like this and that he has always had the scoliosis.
    Nobody knows their child better than a parent and I argued back that this was a new thing and that we had never been told that he has scoliosis. I came away shocked, upset and confused. I started to google about this and found it is common but should also be kept an eye on with regular check ups and xrays. None of which were offered to us. Our GP has been fantastic and has pushed for further checks and a CT scan, we are now awaiting the results.
    Josh looks like a able bodied child and because of this is expected to act like one which is not the cas. He is unable to keep up with his peers as much as he would like to, this has a knock on affect with his confidence.
    I am about to take on the borough as regards his education, josh has just been diagnosed with dyslexia and has the academic levels of a 7yr old. Apparently i'm not to be concerned by this and Josh should remain in a school where he constantly feels like a failure. My son had become a school refuser, so at Easter I decided to withdraw Josh from mainstream school as this was having a knock on effect with his confidence and self asteem as well as his education. I am now in the process of trying to get him into a SEN school which will benefit his education, confidence and future life skills.
    It annoys me that we have to constantly battle for our children and we are made to feel that we are just over protective parents. All I want is what my son is entitled to and that is a good education and a great future .

    GillyWilly
  • panther
    panther Community member Posts: 251 Courageous
    Hi GillyWilly
    I wish there was something that I could say that was more postive than what I'm about to say but unfortunately fighting for what you want/need etc seems to be part and parcel of having cp only they never tell you that bit when they diagnose your child with the condition.
    From my expierence and many of the other people on here it doesn't get any easier once you are an adult if anything it gets harder. Most medical proffesionals be they doctors, physios, gps whatever tend to look at you as if they don't know what to do with you. I've lost count of the number of times I've had to fight to get reffered to a physio to then have the physio turn round and say but you're an adult with cp I don't know what to do with you we only work with children with cp.
    It's almost as if they think throw everything at a child with cp and then it will go away by the time they are adults if only that was the case lol!!
    Hang on in there and fight for whatever you feel Josh needs because you're right no one knows thier child better than a parent. And remember we are always here to offer advice, support or just to read your rants as you off load some frustrartion at the system because I know it gets really frustrating at times.
    Take care Helen
  • MG
    MG Community member Posts: 1 Listener
    KNEE PAIN
    Hi can any one offer any support or info? I am 29 and have mild cp. I have always walked unaided. In recent months, and in particular in recent weeks, I have been experiencing really bad knee pain. I cannot go down stairs properly and I am exhausted by the end of the day even though my job is very sedentry. Any advice or help gratefully received. I am fed up and in pain and it wakes me up at night. I have seen my GP, I have co-codomol. I have seen surgeons for consults and physios. It is really getting me down. I never really felt disabled before. I work full time and have a very busy social life and do not want to give up either. I refuse to. But I am in a lot of pain and it is very exhausting. Help?
  • panther
    panther Community member Posts: 251 Courageous
    Hi MG
    Your post brought a smile to my face as it reminded me so much of myself at your age I was just as stubborn and wanted to do it all live independently, work, have a social life etc but over time I realised I couldn't do it all.
    If working meant I didn't have a life outside work because I was so exhausted and in pain then something had to give so work hours were the first thing to be reduced. Don't make the mistakes that I did and find that one morning you wake up and find you can't move out of bed or stand up because your legs or your knee just won't let you.
    Go back to your gp if the co-codomol isn't working see if the dose can be increased or change for something else, also ask about being reffered to a physio for an assessment I know there's many of us on here myself included that moan about the lack of understanding from physios of cp in adults but it's a start if nothing else.
    Again I know it's said on here time and time again but look up the scope cp and ageing factsheet on here under information it's worth reading and maybe even taking along to the gp and physio you're be surprised the number of health professionals that have no knowledge of it.
    In the mean time stop expecting yourself to be able to do everything slow down and allow yourself some breathing space and a rest it doesn't hurt anyone if you put your feet up occassionally and don't go out. Though I do know the idea of slowing down things a bit and creating some me time is a hard one to get your head round I still stuggle with that one at times even now.
    Good luck let us know how you get on.
    Helen
  • Noah
    Noah Community member Posts: 425 Pioneering
    Hey MG,
    I'm 28 and have CP and can really relate to everything you say like you I work and have a busy social life, u r obvoisly very determined "I refuse to". Like it - I've found that getting my footware right is the starting point to trying to reduce pain there upward. I started 5 years ago walking with two sticks which has also helped tremedasly take the wieght off my limbs and has helped keep my back straight. I do Physio every day in a hot bath which helps. I beleve using the sticks has exended my walking life.

    Try not to let you get you down, focus on what you can do and listen to your body. I lerning that at the mo, with help from people i love. even thinking maybe I should use my wheelchair more but I'm very determined not to. But as a very good friend said to me, you should consider anything that allows you to do more, and makes you feel lest tired.

    Noah

    See my post on Dancing, something else i'm working on!
  • LizzieD
    LizzieD Community member Posts: 4 Listener
    Hi, I am quite interested in this. My daughter, now 33, has spastic hemiplegia (though her other two limbs are not 100%) and mild scoliosis. Her main probems with walking were balance (better, these days) and some perceptual problems (judging kerbs, etc.) Her walk is "effortful" and when she is tired she gets a lot more uncordinated - but will seldom complain. In fact, she never complains!. We tended to use a combination of walking/wheelchair until she was about 18, when she started to go out more with carers - who hated the wheelchair. Since then, she seldom uses her chair. She has put on a bit of weight, and too my annoyance, my husband believes that marathon (for her) walks are a Good Thing. I am not at all sure about this - but in the absence of much in the way of physio or a doctor who knows anything about CP, cannot persuade him or her carers that perhaps occasional use of her wheelchair is not a bad idea. She is not all that confident outside, and often needs to hang rather heavily on her carers - but I am really not sure what is the right thing to do. Latest physios - not CP specialists - say her hips are showing signs of strain. Obviously some walking is beneficial - but how much is too much? Everyone else seems to think the further the better, but I am not convinced. If we take her wheelchair on occasions, she reverts to the walking/sitting pattern she had when she was younger, but her carers look at me as if I were mad when I raise the issue, and I am not sure enough of my view to insist..
  • panther
    panther Community member Posts: 251 Courageous
    Hi Lizzie
    Have you looked at the cp and ageing factsheet that is on here under the information section it might be worth reading it and also showing it to your husband and your daughters carers.
    I walk about indoors but tend to use my wheelchair when I go out as walking long distances makes me really tired and sometimes either causes pain in my legs and hips or aggrievates pain that is already there.
    I would rather use my chair when out so I can enjoy being out for longer than only manage to be out a short time due to pain or fatigue.
    At times if we have gone somewhere in the car I may walk a little bit holding someones arm or for example pushing a trolley round the supermarkert so I still get some exercise as well as the walking I do around the house. Have you thought of other exercise that your daughter could do like swimming maybe?
    I've walked round the supermarket using the trolley to hold on to this morning and am now exhausted I wouldn't be surprised if I end up needing a sleep this afternoon, but that is what is like for me if I try to walk too much now. Your daughter may not complain because in some ways there's no point complaining about it but as pain and fatigue can't be seen it is difficult to know if the person is having problems. Have you asked your daughter what she wants to do? If she wants to use her chair one day for example because she is tired but then maybe feel like walking on another.
    There is no way on this earth someone would get me to do "marathon walks" now short walks like round a supermarket are more than enough now.
    Hope some of this is helpful to you. Take care Helen

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