Cerebral Palsy
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Adults with cp and neurologists

pantherpanther Member Posts: 251 Courageous
edited June 2014 in Cerebral Palsy
I wondered if any one can help with this I tried to speak to scope response but got nowhere the only response I got was we're not allowed to discuss medical situations. Personally I didn't feel my query was that much of a medical situation but I guess that's just Scope nowadays.

I went to my doctor this week and he has suggested that he reffers me to a neurologist. As the gp is getting stuck on what to suggest what to do to help the aches and pains I've got as part of my ageing within the cp.

What I wanted to know is will a neurologist be able to help I don't understand why make the refferal to the neurologist. I know cp is a neurological condition but my understand is that the damage to the brain doesn't get worse as you get older. The problem are all more of a physical nature so will a neurologist really be any help?

Any adults with cp or anyone else that might be able to help me get my head round whether or not this refferal will be helpful it would be good to hear about your experiences.



  • ScopeHelplineScopeHelpline Member Posts: 209 Courageous
    edited June 2014
    Dear Helen

    We are sorry that you are disappointed that Scope Response were unable to answer your specific query relating to your personal medical circumstances. However, it would have been inappropriate for the person you spoke to speculate what your GP’s motives were for referring you to a neurologist. We would suggest that if you need clarification of your GP’s reasoning that you address your questions to him.

    You are correct in stating that, with cp, the actual damage to the brain does not worsen with age but the consequences of that damage can change during a persons lifetime. Therefore, some individuals find it necessary to seek advice from a variety of professionals as they age. Neurologists can advise on many issues to do with the bodies nervous system, their expertise goes beyond the physical components of the nervous system (brain, spinal cord, nerves etc) to include the functions of the system such as pain responses.

    The fact that your GP has referred you could be viewed as confirmation that he is taking your concerns seriously. If, after assessing you, the neurologist feels that a colleague from a different disciple of medicine would be better placed to advise you he or she will be able to refer you accordingly.

    Best Wishes

    Forums Moderator.
  • pantherpanther Member Posts: 251 Courageous
    Thank you for your reply. Why couldn't the person on the phone explain what you have explained in this post about neurologists etc that's what I wanted to know was there really something a neurologist could may be do.
    I was struggling to see how the two linked together and wanted some input from someone that may of had a better understanding than I did.


  • HymerkarHymerkar Member Posts: 63 Courageous
    Hi Helen,

    I am still strugling to find my way around this new forum, hence my absence for a while.

    Sorry to hear you are still suffering and getting no answers. I am currently in the hands of a Neurologist, not for my cp but for the Intracranial Hypertension I was diagnosed with 18 months ago - not connected to cp at all. However, he has never showed any interest in the cp and I thought that it wasnt really 'his thing'.

    Recently, because of the problems I am having with my feet etc. I have been referred to a Neurologic Physiotherapist. Hey presto, she understands CP in adults. What a breath of fresh air. She said she rarely sees an adult with CP but she does understand my problems. The first thing she did was refer me to a Podiatrist who has made insoles for my shoes. I have been going to the orthotics department at the same hospital for over 22 years and he said he can do no more for me. The podiatrist said she can help to take the pressure off my toes. She also said that I was right (in her opinion) to refuse bunion surgery, because in my case, it would not be successful and would likely to have made my problem worse. She made me some temp insoles and I get the proper ones on Friday, so far so good. My feet are better already. Also, the physio has arranged for me to have Hydrotherapy once a week and is also looking into the possibility of Botox into my calf to relieve the muscles. She isnt sure about it, so she is checking before she sends me off to meet the consultant who does it.

    So, maybe, it would be worth going down the Neurologist route? See what the consulant says, and also ask if there is a neurologist physio?

    Hope this helps, good luck and take care, nice to be back in touch.

  • pantherpanther Member Posts: 251 Courageous
    Hi Karen I wondered where you'd disappeared to! Good to be back in touch. I'm still waiting for the neurology appointment to come through so will have to see what happens. Have seen a podiatrist before they tried insoles in my shoes then they decided to make me shoes but I went for the last fitting and they then decided oh maybe this isn't a good idea, the shoes you wear give you more support than these will so they threw them away!!
    I've tried hydro after one of my bunion surgery ops but it made me unable to move out of bed for a few days after each session.
    I think tthere is a neuro physio but the last I heard was that there was a really long waiting list to see her and she's no longer taking refferals because she has too many people!!
    The gp has currently got me on dantrolene tablets and voltrol. I've tried dantrolene on it's own but after a few months it stopped working then over time it's been increased to 4 dantrolene a day and 3 voltrol a day which at the moment seems to be helping. I was also given quinnie sulphate but that made me feel really ill I had a bad reaction to it after 10 days everything hurt my knees hurt and kept giving way, my back ached and I felt dreadful. Although the gp says he doesn't think it was the quinnie sulphate making me feel that bad since I came off it I haven't felt so bad and my knees have stopped hurting so I think it must of been the tablets.
    I've also got to decide if I want more surgery as there has been further complications in all the bunion surgery I've had. After the last lot they pinned all my toes except my little toes. And they said I would not be able to walk on my toes afterwards, but I'm still walking on my toes and it's causing further problems. They are now talking about amputating my little toe on my left foot and they need to do something to the other little toe as it's become claw like and is going under the toe next to it. So I think probably in hindsight maybe you did the right thing by not having bunion surgery done. It is getting me down sometimes because it feels like it is never ending.
    I'd also like to have a baby with my partner since we last talked he's moved in with me but then I keep thinking will I manage with a baby. Am also very concerned about all the changes beinbg made to incapacity benefit and ESA as it wouldn't surprise me if they try and get me to go back to work. The stress of all the benefit changes has also started my stress seizures off again so that is another reason the gp wants me to see a neurologist to investigate these episodes as well as the cp. He wants 1 neurologist to do both so will have to wait and see what happens.
    Good to talk to you again take care talk soon love Helen x
  • HymerkarHymerkar Member Posts: 63 Courageous
    Oh Helen, you really are having a rough time, again. Hope you get some answers soon from your Neuro appt. I suppose I am lucky in the fact that where I live waiting list are short compared to some parts of UK. I had a letter asking me to make an appt with the neuro physio, that was the first I knew about it, I didnt know who had referred me. So I phoned the number, spoke directly to the physio and she asked me if I could go and see her the next day! The only reason I am waiting for an appt for Hydro is that their hoist is broken.

    I know what you mean about the Hydro, I have been there before, and for the first three sessions I was totally whacked afterwards and slept all afternoon and ached the next day, but gradually it got easier. Luckily my partner is here with me 24/7 so he was able to take care of me. By the last session I was fine and we went for a day out after I came out of the pool !!

    The current situation with the government threats of cut backs is worrying us too. I have already had to attend 5 interviews with the idea of getting me back to work, but they said there was no chance of me working again, so they will leave me alone for 2yrs - they must know more about cp than I do if they think I am going to improve lol.

    Having a baby? Well, that is a big decision for anyone, and nobody can really advise you on that one. Congratulations on your partner moving in with you, thats a big step, all the very best to both of you.

    Keep us informed - Love Karen
  • pantherpanther Member Posts: 251 Courageous
    Hi Karen Well some good news the consultant that did all my earlier foot surgery phoned me yesterday and has agreed to see me himself because back in March I saw one of his registrars and I've told him that I want his opinion before I commit to any more surgery. Luckily the consultant himself agreed and has told me not to accept any more appointments except if they are with him. The only downside is the consultant I trust because he has a strong background and understanding of cp is going on holiday for 3 weeks so have got to wait until after that.
    So all I can do is sit and wait for that appointment and the neurology appointment and all the changes to benefits and whatever that is going to mean. My worry is I'n only 36 so I can't see them letting me get away with not working at all if they find me something sat down or if I'm in my wheelchair. The gp has already told me he doesn't know how I prove pain and fatigue my two biggest problems so it could be fun and games.
    Glad the hydro is helpful to you at least one of us is getting some support and help etc.
    Take care will talk soon and give you an update!! Love Helen
  • HymerkarHymerkar Member Posts: 63 Courageous
    Sounds like you might be getting somewhere with the consultant at last. Good luck with that one. As for your GP - I wonder how he would feel if he had to spend a day in our body? My gp once described my cp to me (when I was moaning to him about being absoloutly knackered and I only had a common cold!) he said, to a 'normal' person a cold is nothing, YOU use up so much energy just going about your daily task that having somthing as simple as a cold can leave you running on half power, as if your batteries are down, and as you need full power just to function, the common cold which everyone else can cope with will leave you feeling very tired and lifeless. He then added, its just how it is for you and your cp. I recently said this to a friend of mine, who also has cp, and she said how she explains it is that she feels like the tin man in the Wizard of Oz. So stiff, she feels she needs oiling, and just walking and moving around is so exhausting.

    Try not to let the cuts worry you to much,

    Take care, love Karen
  • pantherpanther Member Posts: 251 Courageous
    Hi Karen Yes hopefully seeing this consultant will help though part of me is still scared by it all and doesn't really want to hear it let alone go through it all again. I guess it's fear of the unknown.
    I know what you mean about running on empty I feel a bit like that at the moment feel like I'm just on automatic pilot with everything and not really interested in anything at all just feel I've reached that point where I'm past caring.
    I know if I was to say this to the gp he'd probably redo the depression questionnaire he did earlier in the year but I really can't be bothered to see the gp again either!!
    A good nights sleep and a few days with no pain is probably what I need but don't seem to be getting either of those at the moment.
    Take care love Helen
  • candykanecandykane Member Posts: 1
    my name is Cheryl and I am a 22 year old adult with CP my condition affects my right leg, my walking and flexibility. I lead a very independent active lifestyle untill around a year ago when I began expieriencing severe back pain that is now chronic. My physio gave me some stretches to do and said they's make another appointment but that was in January I contacted the office but she hasn't got back to me.
    It has been explained to me the pain is due to my mucles being strained and becoming stiffer due to my gait. This is apparently common in CP sufferers although I was never told this.
    I have to gently strenghten my mucles and eventually I'm told the pain will go away if I keep this up. I plan to learn to swim as I'm sure this will help however I wondered what else was available to help.
    I am struggling with this pain on a day to day basis and the pain killers they gave me do not work. I currently study art and design at college and I want to study prop making for films at university in 2011 but I am begining to worry I will not be able to do this as they are active courses. any suggestions would be very much appreciated.

  • pantherpanther Member Posts: 251 Courageous
    Hi Cheryl There's many of us on here that as we've got older have discovered that we've come up against problems so I'm sure you're find many posts where we've ranted about it all plus the lack of support for adults etc.
    I was about your age when I noticed problems thinking back I think mine started with back pain and tight achillies tendons. It probably is your gait causing problems because as your back hurts you've probably without realising it adjusted your walking to compensate for the pain and this could be aggrivating things.
    Hassle your physio until you get another appointment or go back to your gp and complain that the physio isn't getting back to you and see if they can contact the physio on your behalf.
    Scope do a factsheet on cp and ageing you can download it off here under the information section it might be worth reading and I also took a copy to my gp and my then physio although I no longer get physio. As many health professionals don't seem to realise the strain cp has on your body as you get older.
    A gait analysis could be useful it will show how you are currently walking and where the problem areas are or could be in the future which could help your physio to tailor your sessions better. You can ask your gp to reffer you for a gait analysis.Also talk to your gp about medication and get some stronger pain killers or other medication if he thinks that would be better if your current painkillers aren't working.
    Just hang on in there and keep fighting even if it means you're on the phone to the physio every week and at the gps every other week as an adult with cp we have to fight for everything we can get!!
    Good luck with all you want to do try and pace yourself a bit I found the next problem I came up against was fatigue and the tireder I was the worse the pain was it tends to be a never ending circle.
    Take care Helen
  • suzy2suzy2 Member Posts: 1
    Hi Cheryl, my name is suzanne I am 45 and was born with CP which also affects my right leg. I have only just joined this forum. I feel silly to say that I never realized that there were other adults with my condition out there. So thanks to all the posts that I have read I can now see that I am not 'alone'.

    Cheryl, I live a very independent life with my husband and teenage sons. I spent my childhood having all the usual ops and physio. But now I am having many difficulties with back pain ect. My problem is that my CP is quite undetectable to the normal eye. ( I am forever being abused in disabled spaces for using them)
    My CP affects my balance and I walk compleatly up on my toes. I manage my pain very badly with pain killers. So I can be of no help to you there. But I can tell you could still be able to attend your course. Ask your Dr. to send you to a physio who only deals with CP clients. They can show you how to deal with different activities. This has been helpful for me throughout my life. Tell them what you want to achive they may be able to help. You may also find that although your course will be very active, it may be possible to adapt it to meet with your difficulties, you have to look into it and ask ask ask and ask.
    Warmest Regards Suzanne
  • JackiePughJackiePugh Member Posts: 1
    I am also a CP sufferer, although to the untrained eye it looks like perhaps I have just got a bit of a stiff ankle with a very slight limp. I havent had much trouble with the condition throughout my life (Im 46) but in the past 10 months or so things have escalated badly so that now I am in constant pain including sciatica, cramp, shin splints. I was refered to a podiatrist and eventually 14 weeks later I got an appointment .The Podiatrist was very helpful, gave me some exercises to do and ordered me some insoles for my shoes. I imagined that it would be regarded as a matter of urgency to get these insoles to me but I am now very dismayed to learn that they will take ten weeks!!! As the main bread winner in my family I am now very worried that I will have to stop working as the pain and fatigue are quite severe. Does anyone know of a painkiller that actually works for this condition because the GP doesnt seem to have a clue?
  • pantherpanther Member Posts: 251 Courageous
    Hi Jackie

    My gp has tended to look at muscle relaxants, Baclofen, anti inflamintories or strong pain killers like codiene or something. Have you tried seeing a different gp to see if they have better suggestions than the gp you see. I say it all the time on here have you looked at the ageing and cp factsheet on here that Scope do under their information section? It might be worth taking it along to the doctors with you.

    Over the years I've worked my way through many of the different drugs supposedly meant to help some do help, some don't but then I'm sensitive to tablet doses so that doesn't help!!

    Take care good luck with it all.

  • twistywillowtwistywillow Member Posts: 1
    Hi all. I am new to the forum, and I am not sure how it all works so forgive me if this is in the wrong place. I wanted to reply to a couple of indvidual posts but realised that I share the name of someone who has already posted!
    My name is Cheryl, I am 45 years old and I have athletoid cp.
    I can identify with so much a few of you have said! The fear of what the new ESA means is the biggest one, the changes that are happening as I am getting older, my inability to control my body or what it is currently doing, and the desire to have children.
    My cp is 'only' mild, but as the world goes with cp there is no 'only' about it. I would welcome the chance to chat with people who know what I am talking about and know what it feels like because love them as I do, my family hasnt got a clue!
    I have over the years tried to get answers as to why something has happened and the what ifs,but there are no answers, no one has a clue. I am kind of tired of making it up as I go along LOL!
    Currently my body is starting to let me down and I have more problems than my mother who is now 66! She can shimmy up and down ladders, decorate her home, double dig her veg patch and work full time, yet I struggle to get out of bed each day! :-/ Blah!
    I am married, he is wonderful, doesnt, never has seen the disability(? never know what to call it? wonky smile, crooked back, drunken speech, clumsy oaf) that is me, we have had 3 children, and I am just their mum. As yet they are too young to know there is a difference between other mums and I... I worry about what happens when they do, I worry about the teasing they might, almost inevitably experience because of me and I worry about being told I look like a grandma and they dont want to walk with me because all the other mums are (normal!) and way cooler!
    This week my gp told me not to worry about being overweight and that going to gym wont fix it. I said what will, he said to starve! I dont get if he is being sarcastic or honest. I went to see him because I have joint pain,and it has been getting worse in my knee causing me to limp. He said its probably a touch of arthritis and not to worry, we'll wash it out! Ha, ta mate, I know what that means, my husband had it done to his ankle, and its 3 weeks on crutches and if I could loose weight it would help? after all everyone kept blathering on about clinical obesity and diabetes when I was pregnant and now, no one gives a stuff?? Pretty much it seems! So off for an xray today and the radiographer made me bend and move my leg in a way that was jolly uncomfortable, and asked me to lay flat on my back.... err no can do..! Last year I was finally diagnosed as having scoliosis. I have it appears gone under the radar most of my life because nothing got diagnosed until I was 24. My mother was told I was subhuman and to put me into a home. She refused. My father didnt care either way. I was girl, I didnt register. I went to main stream schools and she fought hard to keep me there. I was slow,behind with my learning, but I suppose they tried, on teacher did anyway, I learnt to write and read slowly and at secondary school I struggled emensly to keep up or fit in. I often wonder if I had gone to a special school I might have done better? but I dont know if I would have fitted in, as I say, the cp is mild, I have no reference point. I failed to gain any academic qualifications due to family upheaval and moving the exact week of the exams. I went on the dole. The work experience groups, with other unemployables. The low IQs, the blind, the clubbed feet, the drop outs who couldnt be bothered, all told to work hard so we might get taken on at the end of the course. None of us did, we were cheap labour for those that could work, and for those that couldnt, the company got paid for keeping us off the dole statistics. Most of us got wise to it. I did have jobs, factory worker, kitchen help, house maid, vegetable packer, cleaner, shelf filler, dogs body, bottle washer, anything but the shiny new career the disability officer would promise at the dole office. Then one day, it changed. I was employed as the token disabled person by a supermarket, the manager seemed nice enough, had a habit of talking at you not to you though. Placed me in the dairy section. I was supposed to train on deli for a month then work my way around. I ended up working in a refridgerator for 4 months and only allowed out to shelf fill or clean when the store was empty or it was a slow night. I did get trained for deli, but that was it. One day I got a chip of paint off a shelf down the nail of a finger and had to go to the doctor. He asked me how I got it and why I wasnt at A&E. I told him I had to go back to work, he said no, go home, you have to have a tetnus jab and antibiotics and rest, he signed me off. I went home, phoned work and got abused by said boss for being a skiving spasso and told not to go back if I wasnt there in the morning. I went in next day and got more of the same. I was pretty upset, at lunch I told my boyfriend and he said dont go back, go back on income support. I felt a failure. I got depressed, had no money no life, no job and kept hearing the S word. I saw my doctor and asked why I was slow and stupid and clumsy and had weird speech and couldnt keep a job.
    For the first time in my life I got an honest answer. My mother had always denied it, never faced up to it, always said I never had CP there was nothing wrong with me. At 24 I realised she was wrong. I havent been able to get out of her why. But sure enough, it wasnt in my notes other than birth trauma to my head, jaundice and a failure to feed. Oh and calipers and leg straighteners and a back brace. Mum has conveniently forgotten all of it.
    My gp who obviously had some knowledge of CP (some dont, I got asked by an obstetrician when I had my daughter how long I had had CP for...! He sent me to London, alas not to see the Queen, but to the University hospital of neurology and that sort of thing. Victorian, archaic smell, high ceilings wood clad walls with pea green paint. It scared the heck out of me. I sat in front of 4 doctors/professors in a huge room that echoed, They asked me to walk here and there, bend over, catch this ball touch my nose, walk a line, read this write that. I must have been there for hours, a performing guinea pig.
    Still, the diagnosis arrived on headed note paper at my GPs, and he read it out and I had no clue what athletoid or dyspraxia or discalcula or bilateral was. I do now. I ended up on sick benefit for a year until the DWP (as is now) could decide what to do with me. Then I got the Invalidity benefit and was told happily by my DRO at the dole office to go away have a good life and not worry about working ever again. And thats what I did. After a car accident in the mid 90s I had wiplash and nerve damage to my spine which has given me a slight limp and chronic (to me!) back ache ever since. Finally last year after being on co proxamol intermittantly throughout bad episodes I managed to get an xray,after a fall which showed scoliosis. Never heard of that either until then! I am now experiencing pain on a constant basis in my lower back, and taking co codamol daily despite my stubborness not to take anything and to work it out through physio, hydrotherapy and self denial! I got discharged from physio, told they cant do anything about it, go away hae a nice life and keep taking the tablets! They did support me in my wish to join gym and get fit, loose weight etc, but on the GP referral program, and that has unfortunatly upset my knee joint which as led me to an xray today. I saw my Gp about my knee in march, he said I probably stepped on it funny walking in the ice and snow and gave me ibruprofen. It helped but didnt fix it.
    The reason (sorry long explanation to get here) for my joining you is because I know nothing of how any of this affects adults with cerebral palsy. I have been told it wont get worse, and yet I am wondering if the CP is the factor that is causing everything else to go up the creek. I cannot find anything about muscle tone weakness in old age, or arthritis or scoliosis/cp or obesity/ inability to exercise indicators in cp. Nothing, even the GP doesnt know. He probably doesnt want to know LOL!
    So I wondered if anyone here can help or has any idea of what I am talking about, because all the literature I read over the years indicates people with CP usually dont live long, if so I feel very blessed to have got this far and had the wonderful life with my husband and children I do have now. Mum let slip that I was lucky to get to 30... LOL
    Anyway, thanks for reading all this, sorry its very long.
  • pantherpanther Member Posts: 251 Courageous
    Hi Cheryl
    Sounds like you have been through a lot. If you've read the earlier posts on here you may of already read this factsheet but take a look at the Ageing and cp factsheet on here under the info section it might help answer some of your questions.
    Though often I've found the gps don't often know that much about cp in adults and you have to fight for anything that you want
    Look forward to talking to you again soon I'm keeping this one short as I've been out all day and am now nearly falling asleep the joys of fatigue one of the side effects apparently of ageing and cp!!!
    Take care talk to you soon when I can keep my eyes open!!

  • KonokpaevaKonokpaeva Member Posts: 1
    Hello Helen,

    I was diagnosed with CP in 1939 so you can understand that I have some experience of the problems associated with the condition all the more so as my first wife had CP
  • pantherpanther Member Posts: 251 Courageous
    Hi Karen
    Glad to hear the hydro is working for you hope it continues to go well keep us posted. I only had hydro once that was after one of my bouts of surgery the physios at the hospital set me up with hydro but you were only in the water for about 15 minutes and after one session they decided it wasn't really worth me going all the way to Oxford for 15 minutes of treatment. There ended my hydro sessions.

    Am gearing up for next round of surgery am having another appointment with the consultant in October then once I've talked it over with him will probably agree to going on the waiting list again for surgery so will keep you all posted on how things go there.

    Have a good weekend Karen take care Helen x
  • pantherpanther Member Posts: 251 Courageous
    Hi Ray
    Thank you for your reply ot's interesting that you had to go to Malta before you got the treament you needed says alot about the UK.
    I've had physio as an adult regularly for a number of years at a residential home for people with cp I approached them and asked if their physio would see me and then tackled my PCT to give funding for it. But like many residential homes now a days it closed down and moved people to a new building that was nearer a town and encouraged more independent living and part of that more independent living services like physio were put out to community physio, ot, etc.
    I've had a number of experiences with community physio and they work for about 3 weeks then send me away with no follow up or just say they don't know what to do with me. People have told me I need to see a neuro physio but trying to get that where I live is impossible there is only 1 and I've been told she has far too many patients.
    I've had limited contact with ot once when I was applying for a disabled facilities grant to make my bungalow wheelchair accessible and she was more interested in saving the council money than what I needed. They were blocking up my back door to make the kitchen bigger so I asked how I was supposed to get to my garden and the washing line. Her reply was go out the back door along the pavement and in the shared access gate you have with your neighbour to get round the back. Luckily the man overseeing the disabled facilities grants had more sense and they took out my sitting room window and put in french doors.
    The only other time I had contact with an ot was when the gp reffered me to pain management they came out to see me accussed me of making up what my day can be like and the pain to get attention, they were sent away with the scope cp and ageing factsheet and told not to come back until they'd read it. A day later I had a phonecall saying we couldn't believe what we were reading it's exactly what you were saying and to be honest we don't know what to do so we'll leave you to get on with it you seem to be coping in your own way!
    The gp wants one neurologist to look at the cp and my stress related seizures that have started up again over the last few months. He was unsure which hospital to send me to saying he would start with the local hospital but they may bounce it to Oxford and Oxford may bounce it to London I haven't heard anything and the refferal was quite a few months ago so I assume they're all reading the refferal terrified to take it on so in the mean time we wait to see what will happen but I'm not holding my breath that neurology will be able to do any more than what has been tried in the past. Helen
  • HymerkarHymerkar Member Posts: 63 Courageous
    Hi everyone, thank you for providing some interesting reading! Imagine if we could all get together, there would be no shortage of conversation.

    Anyway, an update on my post:-

    After being referred, at last to a Neuro Physio, who understands CP and in particular CP and adults, I have started my Hydrotherapy sessions at the local hospital. This is my second shot at hydro, the first being about 2 years ago, when I suffered a back problem and attended hydro outpatient clinic. That was a case of 4 or 5 of us (patients) in the pool with one physio all being given excersise to get on with. This time, with the neuro physio, there is only me in the water, and 2 qualified physio's and a student all working on my legs. The first week I was totally exhausted the following day and for 4 days following, but this week, although I was very tired when I got home, I took myself off to bed and had a couple of hours sleep, I have been fine since then. I am looking forward to next Tuesday, because hopefully I will now start to see the benefit. I will let you know next week.

    The upshot, is, that the Neuro physio is the key in all this, she certainly understands a lot more than any other physio I have seen over my 48 yrs!

    Keep smiling everyone, and as Helen says, print off the Aging advice sheet, read it, take note of what it says, you will realise you are not alone in all this. You will find Helen and I and a few other regulars on here quite a lot, dont be afraid to ask, shout screem etc. We will help if we can.

    Take care Karen X
  • acrossthepondacrossthepond Member Posts: 36
    Hi Everyone,
    I am newcomer to this website but I have been following these posts for awhile now. I came across this site by accident and I was elated to find others dealing with secondary issues resulting from mild cerebral palsy, "the non-progressive neurological condition" according to the medical definition of the 1950-60's. As we all know, boy was that wrong.

    I noticed that some of you have mentioned that you (and I) have had trouble getting doctors to understand the difficulties we face such as pain, loss of functioning abilities earlier in life than others etc. and I would like to share two things I found on the internet. Recent searches have caused me to discover two terms that are now starting to appear relating to those of us with these problems. One is physiological burnout and cerebral palsy and another is post-impairment syndrome and cerebral palsy. Google either one and start reading. You will find, as I did, we are not crazy nor are we alone in trying to make our doctors understand.

    My experience with these issues here in the United States has required a trial and error search for neurologists, pain management doctors and others. It took quite awhile before I found out that there is a category of neurological specialists who work in an area of neurology called movement disorders. These doctors are the ones who I have found more helpful and more informed about cerebral palsy than any other doctors specializing in other areas of neurology.

    Unfortunately, not all doctors in this field or others are equally knowledgable or skilled so Botox injections may not be given the same way (such as depth into each muscle or numbers of injections per affected area) and this can change the benefit of such treatments. Clinicians vary in skill levels, desire to listen and consider new developments etc. as I recently found out after moving across country.

    I hope some of this information is beneficial to someone. Please keep sharing your situations because medical science may not support us properly but we can certainly support each other.

  • pantherpanther Member Posts: 251 Courageous
    Hi acrossthepond
    Thanks for your reply you've come up with some useful and interesting things in your post I will have to google some of these things that you've found and see if there is anything that might help with all the pain and fatigue issues or just with getting the doctor to understand
    Hope you've found some useful things for yourself while you've been doing these searches. Please keep in touch with us on here if you find any thing that might be helpful for all of us.
    Take care Helen
  • acrossthepondacrossthepond Member Posts: 36
    Hi Helen,

    There is something that I left out of my last posting. When I first started out trying to find out why in my ability to function and sustain my lifestyle was declining, I heard a public service announcement on the radio that was my first clue.

    The radio announcement said that many people diagnosed with cerebral palsy in the 50's and 60's in particular might have been misdiagnosed and, might, in actuality, suffer from a condition known as Dystonia. The announcement listed potential symptoms that sounded alot like my initial symptoms so I contacted the Dystonia Foundation in the U.S. and asked for information to be sent. The spokesperson in the announcement was the tv actor Michael Connors, who had once starred in a tv program called Mannix. Some may remember him from way back when.

    Upon receipt of the information, things started to line up a little. Through the Dystonia Foundation I received the phone number of a hospital that had a movement disorder clinic and when I called I was given an appointment with a doctor who could evaluate me. It turns out that I have Dystonic Cerebral Palsy. My original diagnosis of CP was deemed corrected but the dystonia accounts for some of the posturing of my limbs etc.

    Finding this out didn't change how my treatment is handled much but it explained some of my other experiences that had or were occurring and continue to do so. It also gave me a wonderful doctor who assisted me for 10 years before leaving his post to work for a pharmacuetical company because of the fiasco that is happening in our healthcare system (a precursor of our current, ongoing problems within our healthcare system.)

    I hope that this information helps some find new or additional avenues of treatment.

  • chriscarterstevenschriscarterstevens Member Posts: 2
    Hi all, I am very new to this forum and hope to be in good company and around others who will understand and empathise with my situation and feelings. I have suffered cp since birth and am now 27. It affects mainly my left side, both arm and leg, and is causing other difficulties such as aches, pains and lack of ability to do simple tasks.

    I too have been referred to a neurologist, and am currently waiting for botox injections into both legs, as my right (good) leg is starting to suffer too due to excess pressure put on it. Does anyone have a clue about possible side effects and/or how regularly it has to be given and its effectiveness?

    I do find, even though I am married and have a 1 yr old daughter whom I adore, I struggle to get family on my wifes side and even my wife (who knows all about my cp) to understand and accept the limitations which my cp is now putting on me. It is frustrating that people almost have the attitude with me that I should get on with things as if I were able bodied (which of course I am not) and I am hoping to find support groups or similar in order to help me cope with the wider problems which I suffer.

    Hope all is well with everyone on here, hope to speak to you soon.
  • HymerkarHymerkar Member Posts: 63 Courageous
    Hi Chris, and welcome to the forum. You have found the right place to meet people who understand what you are going through. As you have probably read, in this thread, Helen recomends printing and reading, and refering to the fact sheet produced by Scope on Ageing with CP. Its a very helpful fact sheet, and you might find it useful to have a copy handy to show to family, friends and even your GP to help them understand what you are going through, and that you are not making it up. Dont worry, I think most of us have been there at some stage, probably due to the fact that as a person 'born' with CP we have learned to just get on with it. What people fail to understand is that as you get older it gets tougher and more difficult to get on with. Its frustrating and depressing, and lack of understanding dosent help, although I am sure they dont mean any harm.

    With regard to the Botox. I have recently had this treatment suggested to me. I was told that it last for approx 3 months, so I could try it and if it works, all well and good, if it dosent at leaset we know it will wear off after 3 months. At the moment I am attending my local hospital once a week for a 25 min Hydrotherapy session, which seems to be helping to loosen my muscles. I also take Baclofen tabs, 10mg twice daily, three times if I feel I need it. Like you, my CP affects one side more than the other, although all four limbs are affected. I can walk unaided, but I am using my crutches more now, and have a rollator for the 'bad days'. I cant walk very far and have a wheelchair which I use outdoors. I try to keep on the move, as I know that once I stop I wont get going again, which is why I am reluctant to accept surgery.

    Well, I hope I have helped and look forward to hearing more from you on here. Good luck with that little girl, take care,

  • pantherpanther Member Posts: 251 Courageous
    Hi Chris
    As Karen has already said welcome to the forum and I'm sure you will find yourself in good company here!
    I'm a hopeless one to advise on medication as I seem to be really sensitve to tablet doses and nothing lasts very long before I get really bad side affects and have to be taken off them. I've tried Baclofen that Karen mentioned but that relaxed my legs too much and I couldn't stand up. I haven't tried Botox when I mntioned it to my gp he said it probably wasn't a good idea because of how I'd reacted to the Baclofen and also that although Botox can work well the body can build up a resistance to it quite quickily thus meaning the doses need to be increased more frequently and then eventually you are on the maximum dose but it's not enough. That said I do know other people that Botox or Baclofen have worked well for.
    I'm just a doctors nightmare I pity whichever neurologist I get reffered to I said to my partner the other day do you think they are passing the refferal between hospitals saying I'm not doing it send it over to another hospital with a neurology department. Because my gp doesn't just want one neurologist to look at the cp but also to look into seizures I've been having years ago I was diagnosed with stress related seizures which eventually stopped but I'm now having these other episodes which we know are seizures but are totally different from anything else I've had before. I think it's all the stress of the welfare reform things doing it but will wait and see if and when I finally get a referal!
    Keep us posted on how things go and in the meantime as Karen and I mentioned give your family and the gp some light reading of the cp and ageing factsheet. Take care Helen
  • MAZZAMAZZA Member Posts: 1
    Hi my name is Mari-Anne i am new to the forum and was interested to read of the experiences of other adults with CP. I have had CP since birth and this has mainly effected my legs. I walk with a slight gait and my right leg and foot turn inwards . I have had many operations to enable me to walk unaided and as a child I had lots of treatment. However since I was 16 following my last major leg operation I have not had any further treatment. Up untill 12 months ago I could still walk unaided and had worked for my local Authority for 26 years from the age of 17. Suddenly without any warning I started to have falls. My legs would give way without any warning and I was refered by my GP to a Neuro physiotherapist who gave me an exercise programme and I use a delta walker when walking outside. I was refered for orthotic shoes at the local hospital and to a neurologist who suggested that I may need Botox injections in my feet as they are now both turning inward. This has never happened! I have not yet had a fitting for shoes either. I received a letter from the physiotherapist who was liaising with the Neurologist and in April I was discharged for not attending any follow up appointments. The problem was that the physio wanted to see me when I had new shoes and I'm still waiting for an appointment! I'm 44 years old and things have got progressively worse over the past 12 months. I'm feeling slightly embarrassed that I need help with everyday tasks such as dressing and feeling fatigued all the time even after short periods of exercise. My hands tremble slightly, my co-ordination has gone to pot and I have pains in the back of my neck and a constantr headache which needed 3 weeks of hospital treatment. The Neurologist doesn't seem overly concerned abot this but I have spoken to my GP to get a referal to the Neurology Unit at the hospital where I was recently a patient. It's a 50 mile round trip in comparrison to a 20 mile round trip to see my current consultant but I reckon that this will reap dividends in the care I'll receive. To top it all off my daughter was diagnosed with Myasthenia Gravis last October and I'm naturally worried about her a well. My husband has been running about from hospital to doctor and back again for the past year with the both of us. With working on a full time basis I seem to be constantly shattered when I come home and at weekend it takes me all my time to lift my head off the pillow. With all the cuts in Local Authority spending I might be offered early retirement. I dare say that others will have similar experiences to mine but it's nice to be able to share problems and hopefully find practical solutions.

    Best wishes
  • pantherpanther Member Posts: 251 Courageous
    Hi Mari Anne
    Sounds like you are having a bad time of things first and foremost either go back to your gp or the neurophysio and explain the reason why you haven't gone to any follow up appointments with the physio was because you still haven't got the new shoes and that you haven't even had an appointment about them.
    If you know contact details for where the shoes were being made contact them as well.
    It seems unless you jump up and down about things as an adult you get very little done. With regards to work I was having the same issues with fatigue and eventually took the decision after a number of months off sick to stop work because I wanted to have a life and didn't want all my time when not at work recovering from being at work. It might be worth thinking about.
    In the mean time either get on the phone or go back to your gp and explain the situation with the non appointment regarding the shoes.

    Take care
  • HymerkarHymerkar Member Posts: 63 Courageous
    Hi Ann Marie, welcome to the 'club' ! I think you will find lots of us on here who are in the same 'club' as you, in that things are getting more difficult for us as adults, and there is very little in the way of support and understanding. I had a regular physio programme at my school until I left in 1979 at the age of 16. The physio and all other support then stopped and I was left to get on with it. I went to St Loyes College, in Exeter and trained as a telephonist, got married, and in the early 80's got my first job. Unfortunately, by 1990 I was finding going to work so physically draining I had no choice but to retire on health grounds in order to have a 'life'. This helped at the time, and my life, for the next 15yrs was reasonably stable as regards my health and physical fitness. In the last 2 years things have got much worse, my feet are very sore because of the abuse they get from my walking. I tried using my wheelchair more, and this gave me terrible back problems. I have shoes from the orthotics department which are not much help, they make them to fit but they soon wear out of shape and give me no support. I have recently started Hydrotherapy sessions at my local hospital, which is a 45 min journey each way, but it is helping, so its worth it. I have had my fourth session today with the Neuro Physio and although I have slept for 3 hours since arriving home, I know that by 2mrw I will feel the benefit. Unfortunately, there is no Hydro next week. I just hope, missing a week dosent set me back.

    It is sometimes hard to feel positive. I am normally a happy cheerful person, but I have to admit that my CP is begining to get me down. I feel cheated in a way, because all my life I have believed that CP is not progressive. I suppose by medical terms it isnt, but in reality, with aging, it IS.

    Its good to come on here, know I am not alone, help others if and when I can. I just wish we could get some sort of support going for ADULTS with CP as there are not many health professionals who even know we exist never mind know what to do with us.

    Well, thats my ramblings over with.

    Take care everyone Karen
  • acrossthepondacrossthepond Member Posts: 36
    Hi Mari-Anne,

    You mentioned in your posting that your legs giveway without warning. I had a similar experience several years ago and eventually my neurologist found the answer, in my case anyway. After he put me through an entire battery of tests, MRI's and brain wave scans etc. he found that there was a difference in my blood pressure when it was taken sitting down vs. standing up. Sitting down, my blood pressure was completely normal. When I stood for 2 minutes and he took it again, it plummeted so fast that he grabbed a chair and made me sit down immediately. He gave me a prescription for some medicine and everything returned to normal. Now, years later, I don't even need to take it anymore. I suspect the low bp was a side effect from the medications I was on then.

    I'm not a doctor but you might ask yours to take your blood pressure sitting and again after standing up for a few minutes. The corresponding numbers may give you an answer to your problem.

    I will keep my fingers crossed for you and I hope you will let me know how things turn out, if you decide to follow up with your doctor. Good luck.

  • pantherpanther Member Posts: 251 Courageous
    Hi All
    Just a quick update on this post I've got an appointment to go and see the neurologist on the 4th October so could be interesting.
    Looks like it's going to be a week of appointments and recovering from them that week because on the 1st I've got an appointment with the consultant for my 4th lot of surgery on my feet and then the neurologist on the 4th. Anyone would think I had nothing better to do.

  • HymerkarHymerkar Member Posts: 63 Courageous
    Hi Helen, a result at last! Good luck with your two appointments. At least they are close together, perhaps you can discuss your surgery on the 1st and then ask the Neurologist his opinion on the 4th before commiting yourself to further surgery?

    All the best, and hope things start to improve for you soon.

    Bye for now


    Ps. I have stopped taking the Baclofen as I was finding I was tired all the time and my legs had gone very heavy. Since stopping them my legs are stiff again, but at least they are not so heavy. I have got a Hydro session tomorrow, so I will have a chat with the physio and get her opinion.
  • HymerkarHymerkar Member Posts: 63 Courageous
    Hi Helen, just when we think things are looking up eh! Sorry your appointment has been messed about, its so frustrating. Last week I had a Hydro session and Eye Clinic on the same weekend at the same hospital - great, two birds etc. On the way to the hospital I had a phone call on my mobile to say the Hydro was cancelled. Today, I have had a call from my GP to say my appt for blood test 2mrw (I have to go every 2 months) has been changed to Friday. My calendar has so many changed appts, I can hardly understand it LOL.

    Well, my Hydro today was my last session, apparently I have had my 6 weeks. They have put me back on the waiting list for a further 6 weeks sessions but cant say when that will be. The physio I saw today said she didnt think my legs were any stiffer despite stopping the Baclofen so she will leave it to me to decide. I think I will go back to how I used them before, where I used to take 2 daily for a week when I feel I need it but not take them for months at a time as I have for the last 6 months.

    Take care, keep your chin up.

    Love Karen
  • pantherpanther Member Posts: 251 Courageous
    Hi Karen What you've said would of been an idea but my appointment on the 1st with the consultant about the foot surgery has been changed to the 8th!! Am begining to think these consultants think we have nothing better to do than keep changing our plans to fit in these appointments. I saw in another post that you've said you've stopped taking the baclofen. I have started stopping my medication some times and when I do for awhile my legs are ok but then they start really hurting again. Good luck with the hydro session hope the physio has some ideas. Take care Helen
  • pantherpanther Member Posts: 251 Courageous
    Hi Karen Frustrating for you to have to wait before you can do more hydro as you've said in another post any benefit gained from the last 6 sessions will probably be undone by the time you get to go back. I've also tried stopping my tablets awhile ago I stopped my dantrolene and voltrol I lasted about 3 weeks. I've stopped taking it again at the moment because I want to talk to the gp as we want to try and start a family and I don't know if I can still take the tablets either during this time or when/if pregnant. One of the tablet leaflets says that one of them may make conceiving more difficult so will see what they say on Friday.Take care love Helen
  • kennedyronnakennedyronna Member Posts: 1
    edited June 2014
    Well according to me physical therapy is used as treatment for people who have severely injured or who have had a surgery. Doctor's have also prescribed Jumper's knee bookwhich consists various stretching exercises that may help in reducing the pain But still I would say that the therapy is performed by a professional and it helps to restore strength and mobility as what was present before the injury occurred or surgery took place.
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