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Balance issues when standing

KatkaKatka Member Posts: 3
edited June 2014 in Disabled people
Hi,

First off, sorry for my English.

I have spastic diplegia and I have always walked independently since I was 5 y/o. However, a couple years ago I started having balance issues when stopping and standing still and it's been getting worse. I can walk relatively long distances (up to about 2 kms) with no problem (sometimes with very mild hip pain) but when I have to stop and stand still (even for mere seconds) I tense up badly and lose balance. It happens in situations like when I have to cross the street, stand in a line, talk to someone when standing, shopping, etc. However, it never happens when I'm relaxed, mostly at home. I started taking baclofen about 2 months ago and I'm taking 30 mg now. The effect is very minimal but higher doses make me sleepy... I wonder if there is something that might work (some specialized exercises or training, EEG/EMG biofeedback) other than assistive devices or this is just one of the "CP and aging" stuff that I will have to get used to. I know many people with CP but no one has the same difficulties with balance. They are either more mobile and walk and stand independently with absolutely no problem or they walk and stand with assistive devices.

I would really appreciate any input on this one.

Thanks,

Kat

Replies

  • pantherpanther Member Posts: 251 Courageous
    Hi Kat

    I don't know if my reply will help you or not all I can say is as I've got older I do seem to have more falls indoors than what I used to. Outside I use a wheelchair or hold someones arm partly due to the cp and in part due to surgery I had a few years ago which ended up really affecting my walking and my balance. But seeing as they told me prior to surgery I may not walk at all after I'm just glad for the mobility I have got.

    Have you spoken to your gp about what is happening to see what they say or suggest? It may just be an ageing thing that you have to learn to live with or they may have some other suggestions. When it comes to medication I can't say much most medication they've tried me on I get really bad side affects even a really small dose of baclofen pretty much sedated me!!

    Good luck with it all go and chat with your gp

    Helen
  • pantherpanther Member Posts: 251 Courageous
    Hi Kat
    Yes it was bunion surgery somewhere on here there is a post that charts all the surgery. In one way it did work in as much as I no longer have bunions but there were a lot of complications due to the cp.
    First time round they let me walk a matter of days after surgery and because I walk automatically on my toes the toes that they'd had to break to do the surgery didn't heal and the screws in the joint where the bunion had been moved. So had to have it re done. Then I had to have the other foot done so second lot of surgery. Then my other toes started to go under so had to have a third lot of surgery and all my toes pinned straight!!
    That third lot of surgery was hard recovery wise because I wasn't allowed to weight bear for 6 weeks to ensure that the pins settled down ok.
    But now although they told me I'd no longer be able to walk on my toes some how I am still walking on my toes when I walk so it's creating other problems so it looks like there could be a fourth lot of surgery I've already seen the registrar earlier this year and he was talking about amputating toes which sounds scarey so I'm seeing the consultant to hear from him what he thinks in October. I trust him because he told me that before he moved into foot and ankle surgery he used to specialise in cp so it's just wait until October for now.
    Sorry your gp isn't very helpful is there another gp at the practise that you could see that may be more understanding and supportive? I know I don't see the gp I'm registered with I always see another gp at the practise because the gp I'm registered with isn't very supportive.
    Good luck Helen x
  • KatkaKatka Member Posts: 3
    Hi Helen,

    Thank you for your reply:) I'm sorry that the surgery didn't work for you. Was it the bunion surgery?
    Unfortunately, my GP is not of much help... That's why I'm seeking info and experiences on the internet.

    Thanks again.

    Kat
  • acrossthepondacrossthepond Member Posts: 36
    Wow Helen! You seem to have had alot going on. I hope your doctors are able to help you. While my problem isn't bunions, I understand about having your toes start to curl. In my case, it seems like the muscles, tendons etc. are contracting from the bottom of my feet. Lately, this seems to be causing me to pitch foward like a ski jumper leaning over the skis during a jump. I sometimes have to touch the wall or a piece of furniture to stop myself. I have been wondering if others experience this type of thing too. Even though I walked on my toes growing up, I thought the new afos I have would stop it. While they do help, it still happens.

    My doctor wants to try injecting me with Baclofen to see how I do. I already know I cannot take this drug orally because it makes me ill, and I have become equally sensitive to many, many other drugs. If the trial works, he wants me to think about having the Baclofen pump surgically installed internally so that it will release dosages automatically. The problem is that I am looking to change doctors because this particular doctor has dropped the ball on other things and shaken my confidence in the process.

    This doctor once told me he didn't know why I pitched foward and that it wasn't cp related in his mind. Other doctors handling other aspects of my cp say it is related and must be dealt with somehow. Physical therapy doesn't help as much with this situation but does with others.

    I hope you let us know how things turn out for you in October.

    Regards,

    Joyce
  • pantherpanther Member Posts: 251 Courageous
    Hi Joyce
    Don't worry I'll update everyone in October I sometimes feel that I live most of my life out on this forum over the years! Just hope some of what I've gone through might help others.
    I find that I tend to hold on to walls and furniture a lot more than I used to when I walk around indoors. If I don't hold something then I don't feel safe especially when carrying a cup of tea, my carpet has seen many spilt cups of tea. When I think about it I put cling film over the top of the cup before I walk or on the days when I don't feel too good and am using my chair indoors so I don't end up with hot tea in my lap!!

    Not sure how I'd feel about baclofen being injected like you I couldn't take it in tablet form and am also sensitive to other doses of tablets which makes life difficult. I guess if baclofen is injected and you have a bad reaction to it you just have to wait for the injection to wear off and cope with the side effects until then, not sure I'd like that. If you decide to go ahead with it let us know how it goes.
    Take care Helen
  • acrossthepondacrossthepond Member Posts: 36
    Thanks for your good wishes Helen. If I do go for the Baclofen trial, I will let you know what happens. According to the doctor, the trial is an injection of Baclofen that would go directly into either my spinal fluid or bloodstream. I am not sure which. It would be just enough of a dose to see if I get any benefit/relief of my spastisity. If there was enough relief, we would discuss my undergoing surgery to install the Baclofen pump. Once the pump was installed, it would be filled with medicine and the dosage would be released automatically according to whatever the doctor programmed it for. The dosage would be increased or decreased based on my body's response until it was believed to be giving me its maximum benefit.
    Since the trial would be done in a hospital, as an out-patient, released the same day, I am sure there would be some medicine they could give me to handle any reaction I might have during the trial.
    The thing is my doctor has made it clear that this pump must be emptied and refilled, monitored regularly without fail or I could suffer serious consequences or possibly die. Another doctor said that I shouldn't have this pump installed if any of my medicines were steroids because that could lead to problems. My doctor, however, disagrees but I have some reservations about him as I said in another posting. Without more reliable input, I will have to wait before I do anything. It's too big a step to rush into unless I become more confident. Still, I need to do something.

    I will keep you posted. I like the idea of cling on the tea cup. I will have to use that.

    Take care.

    Joyce

  • pantherpanther Member Posts: 251 Courageous
    Hi Joyce
    Having just read your post not sure I'd be brave enough to have Baclofen in injection form or the pump fitted that you've talked about so if you did do it you'd be far braver than me!!
    Have you looked in the information section on here I think there's a factsheet on Baclofen that might tell you a bit more about it.
    Also sounds like if you are not given the right level of support and follow up after the pump is fitted there could be serious complications as you've said. Think if it was me in your position I'd be very reluctant to give it all a try especially as like me you've already said you didn't get on with oral Baclofen. I hope you are able to find out more so you can make an informed choice about what to do. I'm just hoping that when I see the neurologist in October he doesn't suggest trying Baclofen again. Keep us posted with whatever you decide is there not anything else they can suggest I take Dantrolene and Voltrol at the moment the Dantrolene is the only tablet so far I've been able to take with out bad side effects though I can only take 4 a day 5 a day made me feel really fuzzy headed and sick.
    Take care Helen
  • acrossthepondacrossthepond Member Posts: 36
    Hi Helen,

    I haven't done anything in regard to trial injection of Baclofen yet. The trial injection, if I have it, and my reactions would be closely monitored at the hospital for several hours before I would be allowed to come home. I agree, though, that I need more information before doing anything.

    I have not heard of the medicines you mentioned. I will need to research them because it may be that I just haven't heard of them or they may be called something else in the U.S. It is definitely something worth looking into so thanks for the suggestion. Since I have problems tolerating medications these days, I need as many options as I can find.

    While I have been told there can be some serious problems, if the pump isn't refilled on schedule etc., I may have to consider it in an effort to stop the muscles from contracting. I am trying to find alternative therapies; I have already been through physical therapy. I have an aquatic therapy regiment and I am going to look into yoga that I can do at home. My insurance only covers certain things and I am already paying for a gym membership so I can do my aquatic exercises that I learned in therapy.

    I will look at the Baclofen fact sheet too. I am sure it will be informative and helpful too. I will let you know how things are going. Please update me on your situation, developments, struggles... take care. Joyce
  • KatkaKatka Member Posts: 3
    Helen, I'm sorry that you have been dealing with this. Amputation of toes because of CP deformity?!?! I've never heard of this. Keep us updated. I hope you will have better news on October. Joyce, good luck with your decision regarding Baclofen pump trial.

    Kat
  • acrossthepondacrossthepond Member Posts: 36
    Hi Helen,

    Are any of your doctors neurologists? Here in the States CP is treated by neurologists specializing in movement disorders. It's a specialty with a specialty and it took me years of trying to resolve my issues with general neurologists before I got into the right hands. Worst of all, none of the doctors I dealt with prior told me that I should see someone trained in movement disorders. I had to discover that on my own and lose valuable time and function in the process.

    Here, in the states, these doctors who specialize in movement disorders generally deal with people who have Parkinson's Disease, Multiple Sclerosis, CP...It might be worth looking into before you make any decisions on what next steps to take. You might even ask your registrar when you go for your consult. While a general neurologist knows a little about CP, it's the specialists that were able to provide me with the most relief of my issues.

    If he or any of your other doctors offer any advice as to what to do for your curling toes, please share it with me since I recently developed that problem, although not to the extent you have. Meanwhile, I will be praying for you. Regards, Joyce
  • acrossthepondacrossthepond Member Posts: 36
    Hi Kat,

    Thanks for your good wishes. If I eventually go through with it, I will let everyone know. Right now, I need to gather as much information as I can and I would like to speak to another doctor first. I want a second opinion from a doctor outside of the circle of doctors I have now.

    I hope you will let me know if you find any solution to your problem. It must be such a struggle for you to have to deal with. Have your doctors given you any kind of explanation?

    By the way, Kat, I was reviewing these posts and while I don't know where you are logistically, your English is fine. Regards, Joyce
  • pantherpanther Member Posts: 251 Courageous
    Hi Kat
    The possible amputation of my little toes is more because the cerebral palsy caused complications in my bunion surgery. They tried putting pins in my toes to keep them straight which supposedly would stop me walking on my toes, but I've still managed to walk on my toes don't ask me how as far as I've been concerned I've just been walking!! It's because of this that all my toes are starting to curl under and cause problems. This is why more surgery is needed. The registrar I saw earlier in the year suggested amputating toes but I'm seeing the actual consultant in October so I'll know more then. Will let you know how it goes at the moment am just trying not to think about it too much!! Take care Helen
  • HymerkarHymerkar Member Posts: 63 Courageous
    Well, I attended the Hydro today, and was told that this would be my last session, as they are only available in blocks of 6. I now have to rejoin the waitng list and wait for a letter to invite me to attend another 6 sessions. The good old NHS, I would have thought that any good which the last 6 sessions have done, will be UNdone by the time I get to have another go?

    I asked about the Baclofen, and the physio has told me to do what I feel is best. So I am going to go back to just taking 20mg daily for about a week as and when I feel I need it. She did suggest I take the subject up with my gp but my gp would just tell me to go with my own feelings.

    I have mentioned it on the forum elsewhere a while ago that the Neuro Physio (not the same one I saw today) has suggested I try Botox injections as she said these only last 3 months, so if they have adverse effects at least we know it will only last 3 months. I am still thinking abou this, but have shelved the idea until it becomes NECESSITY.

    Looking forward to hearing how you get on Joyce.

    Good night all

    Karen
  • HymerkarHymerkar Member Posts: 63 Courageous
    Hi Joyce,

    Having just read your post, I felt I had to respond and share my recent experience. My toes are curling under, which an orthopaedic consultant has recently told me is a result of the muscles in my calves contracting. He suggested removing my toes, as they were getting very sore. I wasnt impressed with his opinion and have now - to cut a long story short - resolved the problem with the help of a pair of innsoles made by the podiatrist and some very soft ear plugs, yes, ear plugs, which I put between my toes to stop them rubbing. He also suggested that I increase my dose of Baclofen, I was only taking 10mg daily and he thought 120mg was a more reasonable dose!!!!!!!!!!!!!!!! My GP was horriefied when she read the report, and suggested I take 30mg daily.

    So, for the last 6 months I have taken 30mg daily. My legs have become increasingly heavy and I have been so tired that most days I have had to go to bed and have slept for 2, sometimes 3 hours. I was totally exhausted. The neruo physio had discussed Baclofen with me, some time ago, and I remembered her telling me that although it is good to relax the muscles, some CP sufferers use the muscle tone to walk. I figured that the Baclofen was weakening my muscles so much that walking was becoming almost impossible. I have now stopped taking it and will have a chat to the physio tomorrow to see what she thinks, I have definately felt better this week, without the medication.

    I will report back when I have more news.

    Take care everyone.

    Karen
  • acrossthepondacrossthepond Member Posts: 36
    Hi Karen,

    Thank you for sharing your experience with me. We seem to have some similar issues and reading your story was eye-opening and very informative. It seems my toes are starting to curl and I sometimes feel a pulling and tingling on the bottom of my feet. It's something like when you foot starts to fall asleep; it has that quasi-numbness sensation.

    It's interesting to hear that your doctor said your problem was related to your calve muscles contracting. I get Botox injections every 3 months that reduce that and yet I have recently, 1 year ago, started to experience this new development. I will be using toe separators too but since I now have afo's I won't be using insoles.

    It's also interesting to read that you are able to tolerate oral Baclofen. The lowest dosage makes me physically ill almost instantly. I have read other posts on this site and it seems that many people on this forum tolerate this drug. Can somebody tell me what your doctors are doing in the UK, that our doctors aren't doing here, that makes that possible?

    Hearing that you feel so tired and unable to function on the new dosage you were given, was food for thought in my trying to decide about the Baclofen pump trial I mentioned in earlier posts. That's something to consider, as is your mention of some CP sufferers using their muscle tone to walk. I don't know if I do that, but it is something to think about and explore with my doctors.

    I am glad that you are feeling better now that you have stopped taking the higher dose. Keep us posted on how things go and thank you so much for all the information.

    Regards,

    Joyce
  • mafalamafala Member Posts: 72 Listener
    Hi Kat,

    The way we use our bodies change as we age. The muscles that we rely on to maintain our posture when we are
    young can get a little "lazy" and they start to become weaker as we get older and we get muscular imbalances that can affect balance (provided that there is nothing else neurological going on). This happens to everybody, unless
    you're active and do exercise. In an adult with CP this problem may come a bit earlier than people without CP.

    Have you tried to see someone about it who specialises in looking at the whole body? An osteopath, an Alexander Technique teacher or a pilates teacher might be able to help you. You probably need to an exercise routine to strengthen some of your muscles. I've heard good things about pilates and CP. I'm an osteopath myself and mother of a child with CP.
  • acrossthepondacrossthepond Member Posts: 36
    Hi Karen,

    I hope you are doing better and that you have found a way to deal with your issues without having to take Baclofen. Having to spend hours in bed each day because of side effects of a medication is not a workable solution, that's for sure.

    I just wanted to let you know that I just started using the soft ear plugs as toe separators as you had suggested. It may be too early to tell since I just started today but they seem to be helping so far. I will keep you posted as time goes by so you will know how things turn out.

    One of my doctors has recommended that I try a modified yoga exercise routine to help with my balance and pain issues. We don't know if I will benefit but I will start working with a physical therapist on Monday who will show me what to do etc. She will make sure that I do the exercises properly so that I can get as much benefit as possible. Since I never tried anything like this before, it will be interesting to see what happens. Since everything will be tailored to my ability and condition, it can't hurt to try it.

    Take care and update me when you can. Joyce
  • HymerkarHymerkar Member Posts: 63 Courageous
    Hi Joyce, sorry I havent been on here for a while, but I am pleased to report that my neurologist has reduced the medication which is draining the fluid from my brain - another condition I am suffering from as well as the CP. This is called Idiopathic Intercranial Hypertension, and has nothing to do with CP, I was only diagnosed with it 18 months ago, and the treatment has been pretty awful, the condition itself is not nice either. However, he seems to think I am going into remission with it, so that was great news.

    I am not sure, but I think the tabs I take for the IIH has made my legs stiffer because since reducing the tabs I definately feel like I am moving easier. I am having a break from the Baclofen at the moment.

    How are you getting on with the soft ear plugs? My chiropodist says I should market the idea LOL. Did I also mention that I spray my toes each day in surgical spirit? It toughens the skin and helps to keep them from rubbing into ulcers. I have had no sores, blisters, corns etc since starting this over 5 years ago.

    Well, look forward to hearing the results.

    Kind regards

    Karen
  • acrossthepondacrossthepond Member Posts: 36
    Hi Karen,

    I'm sorry I didn't respond sooner. Somehow, I lost track of things but I am glad to hear that your situation(s) are improving. I hope that is still the case. It's not surprising to hear that your meds may be responsible for making your legs stiffer. I have had that experience many times too.

    The ear plugs do help but right now I am having more trouble with balance issues. Now I use a quad cane which does help but I still roll my feet over, every so often, when I walk. That causes me to become startled and unsteady. I have managed to recover without falling so far but it gets scary sometimes. I noticed that this started when I started to wear my AFO's. I don't really think there is much that can be done about it so I haven't bothered my doctors with it. I keep hoping to find a way to compensate so it doesn't happen but I haven't figured it out yet.

    You mentioned that you use a surgical spirit to toughen you skin so it doesn't blister when your toes rub together. Can you tell me what you mean? I would try it if I knew what to look for in our stores or pharmacies.

    I haven't done anything about the Baclofen pump. I need to follow that up, (I haven't decided whether to have the pump installed yet but that doctor handles some other things too) since there was a period of cancellations by both the doctors and me. Beyond that, I had out of state company visiting for awhile and that caused my schedule to go to pot. I also think that I am just worn out by it all and I just don't have the desire to see any of this through right now. It's endless and I am just tired of trying to put out all the fires caused by all the different tangents this condition creates.

    I am hoping for a second wind before my meds. run out...

    Stay in touch.

    Regards,

    Joyce

  • AlexMAlexM Member Posts: 3
    Hiya,

    I'm new to the forum and reading some old posts. I have spastic diplegia and really awful balance. I have to hold someone's arm outside or I fall over.

    I have found a 'wobble cushion' which doesn't move as much as a balance board, helpful in improving my balance, especially while moving by standing on it and shifting the air from foot to foot. I can now do this without supporting myself on something for long periods at a time.

  • acrossthepondacrossthepond Member Posts: 36
    Hi Alex,

    Welcome to the forum. I hope that you will continue to join with the rest of us in sharing all types of information and ideas.

    While my balance is not as deeply affected as yours seems to be, I would like to know where you got your wobble cushion from, if it was mail ordered. Or the manufacturer, product name and the approximate cost, if it wasn't, since it sounds like something I might benefit from. With that information, I can begin to look for something similar here in the U.S., without spending money on items that don't work for me.

    It would be wonderful to be able to work on my balance issues without having to go into physical therapy. (again).

    Regards,

    J
  • lil-Alil-A Member Posts: 4
    Hi Kat,

    I joined this forum purely because of reading what you wrote when searching the net for info. I have never been a member of a forum before so bare with me! I am 27 years old, female and also suffer from mild cp. When I read about the problems you are having with standing I couldn't believe I had found someone just like me! I have been having the exact same problems for 7 years and I thought I was alone. The doctors don't seem to know what to do with me. I have had various tests, including an MRI scan. I have been on Baclofen and other drugs but they exhausted me.
    Up until I was 20 I managed life just fine, better than fine, and I now I get scared to walk down the street in case someone stops me for a chat as I am unable to stand and talk to them, like you say even for a second as my body just becomes ridgid. Standing in queues is really difficult- impossible if there is nothing to hold on to, and like you say standing at traffic lights to cross the road.
    I have always been very very active and could do pretty much anything as a child and teenager, I can even run long distance, ride a bike and a horse. While I am very very grateful for the things that I am able to do which perhaps others can't, this problem is becoming a real barrier in me being able to get on with my life as i'd like and as I once did. And as no one seems to be able to provide an answer to the problem its really quite distressing. I have had many people say to me that it is all in my head, including one neurologist I've seen. I know this isn't true.
    I have worked on my feet for 8 years full time as a sales assistant and as I have had the problem for 7 years I'm really wondering whether this has contributed. I have tried to change my job but every time this problem hinders my interview success as I am unable to keep my balance. Just like you I am not too bad in my own relaxed environment. I have also found that I suffer form a lot of back pain and pain in my feet and hips which I never had before.
    I really hope I don't sound like I am moaning too much, I have much to be thankful for, but it's such a relife to be able to discuss this with someone who truly understands. Have you had any luck with a solution yet?

    Amy
  • lil-Alil-A Member Posts: 4
    Hi Kat,

    This is the second time I have posted a response to your post (my first post appeared then I edited it and it never reappeared! So I will try again.
    I too have mild CP. Until 7 years ago it never affected me in any way other than I limped slighlty on my left foot. Over the past few years I have developed exactly the same problem as you are describing. I have to be honest and say I was relieved when I read your post as I thought I was the only one! I stumbled across it whilst looking for some info on the matter. Having read it I thought I should join and respond.
    Growing up and especially during my teens I was able to do pretty much anything, I considered myself 'normal'. At 27 I am still able to do lots of things such as horse ride, run long distances, cycle etc... but I have great problems standing. Standing in a queue as you mentioned, standing at traffic lights and talking to people in the street. My whole body tenses up and I lose balance and it is making getting on in life quite difficult. Whilst I am really very very grateful for all the things I am able to do I would really like an answer to this problem.
    I have tried Baclofen and found it exhausting and of little help. I have also been for and MRI and various other tests.... none of which shed any light on the problem. The doctors don't seem to have an answer- I have even had a couple tell me that it is all in my head. It isn't.
    I have been working in retail full time for 8years and this problem began around 7 years ago. I can't help but wonder if being on my feet all day has contibuted to the problem. I have tried to look for other jobs but found my interview success has been hampered by this problem as I lose my balance. This also adds to my nerves and I think my nerves add to the problem. It is very frustrating.
    Two years ago I started seeing an Osteopath. I would recommend this to you. Mine has been very very helpful. Although I still have the problem I have found that it has been less severe.
    I am also trying to get myself as fit as possible. Before I started work I kept myself really fit, I was lucky to be able to do so in the ways that I did. After starting work I must admit I let myself go a bit. I was enjoying work, working a lot and going out and having a fun like people my age were then. Having always been told that CP doesn't get any worse I perhaps took it for granted that I wouldn't get problems further down the line. No one told me I would.
    I think that exercise and keeping yourself as fit as possible is probably the answer to this. It's very hard to fit everything in when working full time and trying to get on with life, but I have realised it's more about balancing things out.
    I'd love to hear if you have found anything else out about this since you posted. It would be great to have some more thoughts,

    Best Wishes,
    Amy.
  • lil-Alil-A Member Posts: 4
    I see both have now appeared! Apologies for repeating myself!
    Amy.
  • ScopeHelplineScopeHelpline Member Posts: 210 Courageous
    Hi Amy

    Any posts have to be moderated by us, the moderating team, before they go live. Hence the delay! I set both posts live because I wasn't sure which one you wanted to go on. Sorry about that...

    Kind regards

    Forums Moderator
  • lil-Alil-A Member Posts: 4
    No worries at all. I did email enqiuring about the first post and it was suggested to me to re post... forums are new to me so I'm learning! :) Thanks v.much
    Amy
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