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To walk or not?

panther
panther Member Posts: 251 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
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Comments

  • panther
    panther Member Posts: 251 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!!
  • dom
    dom Member Posts: 5
    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
  • panther
    panther Member Posts: 251 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
  • astra
    astra Member Posts: 2
    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
  • pauliewillfixit
    pauliewillfixit Member Posts: 2
    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
  • panther
    panther Member Posts: 251 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
  • Prahran
    Prahran Member Posts: 1
    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?
  • Surya
    Surya Member Posts: 1
    "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
  • higgy
    higgy Member Posts: 2
    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!!
  • panther
    panther Member Posts: 251 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.
  • higgy
    higgy Member Posts: 2
    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
  • sarah5483
    sarah5483 Member Posts: 1
    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
  • panther
    panther Member Posts: 251 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_davies
    sarah_davies Member Posts: 9 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
  • panther
    panther Member Posts: 251 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
  • statto1
    statto1 Member Posts: 1
    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
  • panther
    panther Member Posts: 251 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
  • panther
    panther Member Posts: 251 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
  • susan
    susan Member Posts: 1
    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
  • panther
    panther Member Posts: 251 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

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