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To walk or not?

pantherpanther Posts: 251Member Courageous
edited September 2014 in Cerebral Palsy
Please anyone with any advice please help as I am currently confused, scared and in pain!!

I have mild spastic diplega affecting both legs and am expierencing loads of the symptons of ageing within cp.

I am still walking kind of but during the last few weeks I have noticed as well as an incrediable increase in the tightness in my achilles tendons and increased pain in my hips I have now noticed that both my left and right hamstrings have gone tight, the right more than the left I assume this is because I had a hamstring release on the left as a child so that is why that one isn't too bad.
Though both legs now without warning will go to give way and it feels like it is coming from the hamstrings and right at the back of the knee.

I know sometimes that walking isn't helping it and I do have a wheelchair I use sometimes. But my problem is I have a love hate relationship with my chair and now feel I'm in a no win situation as if I walk it seems to agrevate everything and if I'm in the chair then won't I start to loose my mobility anyway.

Any advice on either using and coping with my chair or generally on the situation gratefully received as at the moment I'm just going round in circles with no one to turn too for advice or support.

Panther

Replies

  • pantherpanther Posts: 251Member Courageous
    Thanks Dom

    I kind of already do that in as much as I walk with chair to the shops as the pavements are to bad!! Then I sit in the chair to go round the shops and then pile all the shopping back in the chair to walk home with.I say the chair is my personal shopping trolley (I'm sure social services would go mad if they knew thats how I use it) but until recently it has worked for me!

    The generally view I get both medically and from those that do offer advice and support is we don't know but then what do you expect if you are still walking or trying to walk at your age!!
  • domdom Posts: 5Member
    Dear Panther

    I can't offer any advice from personal experience but my mother-in-law has MS which affects her walking. One thing she does to try to keep her mobility is use one of the motorised shopping buggies to go to the local shops which she parks outside and then does her shopping etc. This obviously means that she can be more independent in the shops reaching things off high shelves etc and also that she hasn't used up all her energy just getting to the shop in the first place. I don't know if this 50:50 approach would help at all, or whether it would simply mean that someone would nick your chair:-( (the buggies have a key that can be removed)

    Sorry I can't be more helpful
    Dom
  • pantherpanther Posts: 251Member Courageous
    Hi Astra

    Hopefully your daughter won't get too many problems as apparently it doesn't happen to everyone, I've been told its because I have walked unaided since the age of 4 and am still walking now (I am 30).

    Problems started in my early 20s when my achilies tendons went really tight and I think I must of adjusted the way I was walking because of this. That then created bad lower back pain which now comes and goes.

    I had my achilies tendons lenghted at 4 and a hamstring release on my left leg at 8. As an adult I've had to really fight for things like physio and also for them to take me seriously and check things properly rather than put it down to my cp.

    One of the hardest things was the tiredness and general fatigue I was at one point working during the day go to bed as soon as I got in and then sleeping most of the weekend. It is still a problem but I've learn to cope now I just have my own frustration to deal with!!

    As for treatments I was offered a lot of anti inflamatory drugs and drugs to try and control the spasms that started in the lower part of my legs around the achiles area. I was also offer amitriptlene(not sure thats spelt right!) an anti depressant but it sedated me.

    After awhile I stopped taking all the drugs as it was costing me a fortune in pescription fees and I opted for the alternative root for awhile I worked with a chiropractor which helped but as now got too aggressive for my body to take but I also go and have aromatherapy massage and its great after a massage I have a few days with no pain and I sleep really well.

    In my early 20s I started walking with a stick and I now have a wheelchair that I've had for just over a year but I still hate it and still see it as representing it as me getting worse, I see from some of your previous post that you are a wheelchair user any advice to help me come to terms with it?

    I think the hardest thing for me is that I wasn't expecting this to happen and my family aren't supportive I think having always been told cp doesn't get worse made this more of a shock and so its been hard.
    Now I'd say its the unpredictability of it that is hard to deal with.

    I've been asked by my fieldworker to be involved in a conference in a few weeks and I'm talking about my expierence of ageing and cp, if you want if you email me your email address I will email you what I've written for it it may help. By the way the winter months are usually the worse I don't think my legs now like the cold!!

    Take care email me if you want to chat any time

    Helen
  • astraastra Posts: 2Member
    Hi Panther
    What you are describing worries me somewhat because my 3 and a half year old daughter has mild spastic diplegia, mainly affecting her legs and feet. It was such a relief when she finally walked independently and has continued to progress, we didn't really think about things getting worse again when she's older.
    Can you give me more of an idea about what sort of ages the problems have cropped up for you and a bit more of the nature of the problems. I sort of want to be prepared. If you could also include any info on treatments you have had or been offered, I'd be really interested.
    Thanks
    Astra
  • pauliewillfixitpauliewillfixit Posts: 2Member
    Hi Panther,

    My situation is very similar. I have grown up with CP - diplegia - left leg an inch shorter than right. I had an op at 11 or 12 to stretch left tendon - walking improved for about 18 months.

    Since then nothing :)

    I left school and have worked at various jobs some more active than others - BA refused me employment once 'cos it meant climbing a ladder with a toolbox in my left hand! Can't say I blame 'em as I'd never have climbed down!

    I have to confess my last jobs were sitting at a desk but nonetheless I have tried to lead a fairly active life - I am married with teenage children :)

    So where are we now - I am 51 and training to teach, having left my last job through bullying. No I cannot do as much as I could 20 years ago yet I feel more active :) My hips continuously hurt, my legs twitch like they're plugged into electricity and I cannot walk very far. Like you I gave up pills a long time ago - one gets a tolerance & has to put up with other side effects! I cannot do a full week working anymore because my legs get tired faster than they ever did and the energy required to ambulate generally becomes ever greater!

    I recently visited Phsiotherapy via my GP to see if I might be able to use some of the equipment to keep myself fit and was told a) The energy & effort I put into moving around is already too much excercise and b) I ran the risk of wearing things out faster if I try to do more :)

    So - next year I too plan to go for a wheelchair - big step this as it's something I've always tried to avoid. But It's not fair to restrict others with me if I cannot do the distance. However this will be for days out only. I've accomodated my lifestyle so that I do shorter sessions in the day - but of course my voluntary activities increase - Will we ever learn :)

    Addendum: When I left my last job I was reassessed by Physio and given a leg splint for my left leg to adjust my gait and stop knees rubbing! works a treat but what's it doin' to my knees... :)

    Hope this helps
  • pantherpanther Posts: 251Member Courageous
    Hi Jim

    Oh how I laughed as I read your response because yes I could see myself saying exactly the same things as you in 20 years time not sure about the teaching bit though!!

    Yes you are right I don't think we will ever learn!! I have just started on these new painkillers taking as and when I need them called tramacet and for the first time its one that seem to work even getting rid of the really deep pain in my hips, they made me a bit tired at first but that has now worn off.
    Keep in touch
  • PrahranPrahran Posts: 1Member
    I was incredulous when the neurologist diagnosed premature aging. The orthopaedic surgeon had said a wheelchair at thirty but this was ridiculous. How could you be prematurely aged in your early twenties? And how did this fit with cp not being progressive?

    The neurologist said that cp was brain damage, not too dissimilar from a stroke. Damaged brains had less resiliance. We wouldn't be surprised if a stroke patient was frail ... there were parallels in cp.

    It was a tough message and cut straight through the coping strategy of "Legs don't work properly but nothing else should go majorly wrong because, well, doesn't every doctor say that cp is not progressive?"

    Whether the neurologist's right or not, we've found that one thing helps - tricycling.

    We'd tried other forms of exercise with no results. After a few repetitions in physio, spasming set in every time. Yoga was relaxing but progress wasn't noticeable. Swimming was okay for the first few minutes until cold and cramp set in - and the number of hydrotherapy pools is decreasing.

    Had a friend's mother not been trying to find a new home for her exercise bike, we'd never have tried cycling. It was a cheap model but we didn't need fancy gizzmos to prove that turning the pedals was possible with feet tucked under the large pedal straps. More importantly, this was a form of exercise where repetition didn't result in spasming.

    We splashed out on a Pashley tricycle. The first afternoon it seemed like an expensive white elephant because a complete revolution of the pedals wasn't possible without feet flying off. After a couple of weeks, though, we graduated from the deserted back streets to the cycle track on the main road. A few more weeks and using full lung capacity and getting out of breath through exercise was possible - for the first time in years. After a few months the huge red specialist pedals with spikes could be replaced with standard wide pedals. We've also had new gears fitted so that the trike can tackle steep hills better.

    Whereas we had been facing intolerable pain, the embarrassment of frequent falls and increased twistedness as well as not going out (to avoid having to use a wheelchair), the trike is now our mode of transport for almost all journeys under 3 miles. With the added bonus that it and its handy box can wait right outside the shop door, so no more struggling to carry shopping back to the blue badge space. My husband and I cycle nearly every weekend and can do fifteen miles a day comfortably - futher than it was ever possible to walk.

    Of course it's not a panacea - the muscle tightening's still there and the early morning's just as painful. But the sense of freedom is great and the future doesn't look hopeless.

    Perhaps worth a try?
  • SuryaSurya Posts: 1Member
    "As an adult I've had to really fight for things like physio and also for them to take me seriously and check things properly rather than put it down to my cp. "

    Boy does that sound familiar! I don't expect to get back into the net again until I come under geriatrics :(

    I finally got my own wheelchair in 2003 after walking with sticks since 1976 - I was going on a cruise holiday and was not looking forward to constantly having to keep up with tour groups. I don't use it for everyday or in the house (except the kitchen where the cupboards are all low-level and it's easier than bending). But it is a total boon for excursions. I can do a lot and not get tired, which beats doing a little and being exhausted.

    I had a trike, NHS issue, between 1977 and 1990 and it was brilliant, though I never cared for the second model so much (the first one was vandalised outside my rooms in Oxford X-( I really felt murderous for the first time in my life). In the end I moved out of town to somewhere it was too difficult to use. I don't think the NHS issue trikes now? I must look into getting one again ...

    waffling, sorry ...

    Jane W
  • higgyhiggy Posts: 2Member
    Hi Panther you sound exactly like me, i have been using a wheelchair since April 2004. Im 32, i found it so difficult walking about that i no longer felt safe. I dont use it in the house as my house is too small but use it to go to work and out in. I couldnt cope with the chronic pain i was in anymore. I also have chrondomalacia (basically knne gives way with no warning - I am on the floor!!) but the speciallist said nothing he could do - I think because Ive got CP and thats whats caused it in the first place.

    The wheelchair has given me a new lease of life to some degree and although its difficult what else could i have done - they dont do leg transplants!!
  • pantherpanther Posts: 251Member Courageous
    Hi Higgy

    My knee does that too sometimes I didn't know it had a name!!!! my gp said nothing he could do either though he did think it could be arthritis as when the weather is cold and damp my knee will hurt and give way more often.
  • higgyhiggy Posts: 2Member
    I use a leg brace on that leg - its awkward but basically stops my leg giving way - my mum has always been supportive but now i think accepts the inevitable. At least i can still to a point at times manage in the house without the chair
  • sarah5483sarah5483 Posts: 1Member
    Hi everyone I'm new in here. My names Julia and I'm 22. I totaly agree with what you all say about things getting worse but nobody telling you this could happen.

    I have quite sever CP in that it effects all of my body with this I am unable to walk but that doesn't really bother me because I have never walked saying this I can talk well it is one of the few things I can do myself, but over the last year its been getting more difficult I get out of breth very quickly and also get very tight when I talk

    My spine is twisting as well which gives me a lot of pain I'm on pill but they don't seem to help

    When I spoke with my doctor he said he knew this would happen at some point I was like oh thanks for telling me.

    Julia x
  • pantherpanther Posts: 251Member Courageous
    Hi Julia

    How are you? It was good to hear your expierences.
    Like you say it would of been nice if we could of been warned of some of these things before they happened.
    I'm not sure it would of made them any easier to deal with, but if we had known a bit more in advance it may not of freaked us out so much when it did happen.

    Take care and keep in touch

    Panther
  • sarah_daviessarah_davies Posts: 9Member Connected
    I walked everywhere as a child as that was the "done thing" for children with CP in the 70's and 80's. I have ataxic cerebral palsy so have walking problems, mainly that my left knee goes in. Now, I have knee problems, have steroid injections, and get pain. I now use an electric wheelchair outside (I did have a scooter but a wheelchair is easier) and wish somebody had suggested it years ago.

    Sarah
  • pantherpanther Posts: 251Member Courageous
    Hi Sarah

    Like you said it was the done thing for a child with cp to walk at one time. I do still walk sometimes but when I walk now I either walk with a stick or walk pushing my chair so I can sit down if I want to.

    I've had my chair about 3 years now and for the first year hated it and wouldn't use it. But then I realised that if I went to say a big ahopping centre and I was walking I could only manage 3 or 4 shops before wanting to go home as I was so tired. If I take the chair I can happily shop most of the day. This doesn't do my bank balance any good but gives me some enjoyment!!! And like you I wish someone had suggested it years ago, and that my parents hadn't made me feel that by getting a chair I was giving in to the cp etc

    Take care

    Helen
  • statto1statto1 Posts: 1Member
    Hi Panther

    Hope I can be of some use even if its just to moan at im here.

    I had all the problems you were experiencing i also hated even the idea of using a wheelwhair.

    I kept telling myself that if i went anywhere near a wheelchair then in my head I had given up it took a long time for me personally to come to the realiseation that personally for me the only way that i could continue to have a full and active life was to use a wheelchair.

    this was all happening when I was about 26 years old. 3 years ago

    I now use the chair most of the time, but personally it has made me a happier person because I now not the pain and stress that was caused everytime i was walking.

    Panther if you would like to chat please contact me via this forum

    Best Wishes & happyt xmas

    Dean X
  • pantherpanther Posts: 251Member Courageous
    Hi Dean

    Thanks for that it was rather spooky actually reading your reply as what you said was exactly how I felt and I suppose at times still do.

    I am getting a bit better my chair now goes whenever I want to hit a shopping centre as otherwise I'm far to tired to do more than 3 shops!!

    As for indoors I don't really use it as there are a number of places I can't get my chair into in my bungalow. Hopefully if I can get through all the red tape and paperwork of the disabled facilities grants etc that will make things a lot easier.

    And as for pavements forget it, I hadn't realised just how bad the pavements were until I started using my chair. I still walk with the chair a lot of the time then sit down when I get tired. Then use the chair to push the shopping home again!!

    Sounds like in a lot of ways we are at the same place and expierencing similar things. Would like to chat some more so please contact me.

    Take care Happy Christmas to you as well

    Helen
  • pantherpanther Posts: 251Member Courageous
    Hi Dean

    I've been thinking about your earlier reply I fully understand the idea of that in your head you would of given up.

    My problem is that I can see logic behind using the chair when I'm out shopping but not the rest of the time as I think my bungalow is so small is it worth using the chair, and surely if I use the chair too much then I will just get other problems associated with long term chair use.

    Any ideas or thoughts or is my head still in the wrong place to fully accept chair?

    Helen
  • susansusan Posts: 1Member
    Well, Panther!

    I don't come in here so much now, but whenever I do I'm always struck by how similar we appear to be...

    Like you, I noticed impaired performance, almost as if there was a countdown to hitting 30 and then, bam! Everything in my legs got tighter, I fell over more frequently, and the sporadic pain pain in my back and shoulders became a permanent addition.

    So off I went to bag my 5minutes of time with a GP. I only needed one. 'What do you expect' she growled sympathetically.

    Meanwhile, the back pain grew so bad that I now can't walk very much at all, let alone lollop. When I fall over it takes me three days to get up. Haven't been able to work for 8 months. Man, I'm cranky. Not because I loved my job, either.

    Change the GP. And then again. He had STUDENTS with him this time. 'Now's my chance' grinned the monkey. I WANT HELP! I yelled.

    Cue embarrassing moment for the GP as it was revealed that I've had no treatment or support since 1983. Cue suitably shocked students. Teehee.

    I got physio. First time ever. Wired me up to this thing. Wired me up to this thing. Then gave me an honourable discharge from the department, with the diagnosis that 'it's always going to be this way'.

    So I'll never go back to work? I gasped. I doubt I'll ever match my previous pathetic salary through Incapacity Benefit. I knew I shouldn't have blown my savings on that sofa.

    'Oh, you can work!' he said, 'but you'll need an ADAPTIVE ENVIRONMENT. You'll never go back to your previous role.'.

    Now, I've worked in HR. I know there's no such thing as an adaptive environment. There's reasonable adjustment followed by P45. It's a business transaction after all.

    Hang on. I've digressed somewhat.

    Oh yeah! For the first time recently I bit the bullet and asked for a DLA claim form. Never done it before :-D

    For the first time ever I wondered if I should think about using a wheelchair.

    Filling in my claim form I wondered if I do have some care needs.

    I've digressed again. Sorry about that.

    No matter how scary it's getting, I have to give it a positive spin. If I do use a chair I'm going to modify it, tart it up and make it look like such a fantastic proposition that every chuffer will wish they had one.

    Hope this helps!

    --
    CMx
  • pantherpanther Posts: 251Member Courageous
    Hi Crayon Monkey

    You are right we are very similar. I like your coment about if you have a chair you will tart it up.

    I have a K4 Kuschall manual chair which is lightweight. With that I insisted on having spoke guards which in bright letters say find your lifestyle and recently I have added to stickers to the sides of my chair one saying 'does my bum look big in this' and the other saying 'girl racer on board watch ya toes'

    It's surprising the number of times I'm stopped by people who coment on my chair or my stickers. I had the thought process when getting my chair of if I have to have a chair I might as well make sure I'm seen!! So even the general colour scheme if my chair is bright!!

    Good luck with the other things. I know what you mean about not working I haven't worked now for just over a year, and at times it drives me mad too. Though I know I'm just too tired from trying to walk and do all the day to day living things now to hold down a job.

    Take care
    love
    Helen
  • caitlindcaitlind Posts: 1Member
    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
  • mafalamafala Posts: 72Member 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.
  • pantherpanther Posts: 251Member 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
  • GuestGuest Posts: 1,968Member
    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.

  • 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
  • gillywillygillywilly Posts: 1Member
    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
  • pantherpanther Posts: 251Member 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
  • MGMG Posts: 1Member
    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?
  • pantherpanther Posts: 251Member 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
  • NoahNoah Posts: 430Member 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!
  • LizzieDLizzieD Posts: 4Member
    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..
  • pantherpanther Posts: 251Member 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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