I have read the Scope leaflet on aging; however, from it, I got the impression that though the body may deteriorate faster with CP, it would still be a gradual process. I am 31 and have had a dramatic lost in physical function. As a child, I could walk with very little difficulty(with only a slightly wider gait) and slightly impaired balance e.g. I couldn't stand on one leg; my speech is also somewhat slurred but understandable. In many ways, apart from the sports field and not being able to write, there was little to distinguish me from my able bodied peers. Then in my mid twenties, my coordination and balance gradually got worse; this seemed to accelerate in my late twenties. Thus, I now require an electric wheelchair to go out the house. I cannot stand on my own and need to hold a wall for support. I have considerable problems with spasms(which I never had before). My general coordination is now very poor and getting worse. In addition, I have had problems with tiredness. Before, I could work 5 days a week, then I had to cut down to 4 now I have to leave work about 2pm or 3pm due to tiredness.

This sharp deterioration has happened over about 2 or 3 years (though it has been getting worse for 6 or 7 years). What I would like to know is whether other people have had a similar experience where they have had a severe deterioration in their physical condition over a short space of time and whether things stabilised. I have seen several neurologists over several years but the drugs they prescribed didn't help and made my tiredness worse.

John

Hi Johnw

Don't know how many of the other posts you have read but you may of seen many of my earlier posts especially the ones that relate to cp and aging.

Like you as a child I had very few problems other than the fact that I walked up on my toes and was unable to do sports as well the other able bodied children

In my early twentys I left home and also started work I was working part time as a library assistant a job that involved a lot of standing and walking around and I loved it I also was one of the first to offer if there was any over time going!!
Then when I was about 24 I found that I was getting incredibly tired and would spend most of my day off or my weekend off sleeping just to have the energy for the following week. Eventually I had to start having taxis to and from work paid for by access to work instead of catching the train and having the walk to and from train stations.

I also in time had to reduce my hours down to 15hrs a week and had a support worker support me for 12 of those hours. Due to constant fatigue and fairly regular spasms in my legs that hadn't been there before.
Medication didn't help the spasms if anything it made them worse. I had an assesment by the scope assesment team (the worse thing scope did was to close down this service as it was invaulable especially to people in our position) and was advised that with the amount I was expecting my body to do it was no wonder I was so tired as I was permenatly running on my reserve energy levels. Some days I would just get home from work and fall straight to sleep.

I changed jobs working for my local social services the job meant I was sat down all day but eventually after two years I was signed off with work related stress. After 6 months off sick I got a job in one of my local shops just working afternoons. Again as in the library I regularly worked overtime loved the job etc but again the cp started to play up with the spasms, and the tiredness building up after about 9 months the gp was having to sign me off sick nearly every 2 months for a week. In time I again reduced my hours but eventually was given no choice but to leave as I was having more and more time off sick and there was nothing more the shop could do to allow me to carry on working.

I'd like to say since stopping work things have eased but that's not the case there are good days and bad days and I've realised that it comes down to pacing myself which at 31 I find really frustrating. The only positive thing I suppose is that by not working I do now have the energy to do other things like swimming and going out with friends. As I said many years ago I don't want to spend all my life working and then find when I do stop I can't do the things I want to do because my body won't let me. Yes in an ideal world I'd love to still work but I've realised that probably isn't going to happen.

Don't feel you are alone with this I found that things got worse rather quickly but also the worse they got the more you pushed yourself so they got even worse. My only advice and it's easier said than done at the time I know is don't be too hard on yourself and expect too much and make sure you put aside some time to sleep if you need it and also make sure you have some me time and so something you enjoy every now and then. I used to take the battery out the doorbell and turn the answerphone on with the sound down so I could sleep when I needed it, the world won't end and people can always phone back!!

Helen

Hi Panther,
I have read through all the posts I could see on this topic. I continue to work as I enjoy it. My work is not physically demanding in that I get to my desk and don't need to move from it. Also, my employers are very flexible; when I am tired, I go home. I work because it is fun(I am very lucky in that regard). Yes, I do go home shattered but that is because I enjoy what I am doing and want to get it done(and happen to get paid for it); once I am too tired to be productive I just call a taxi and go home to bed. There is no stress related to my work(again I am very lucky).

Did you have spasms before? I never had spasms when younger; now I get quite a lot of them. Apart from spasms, has your general coordination deteriorated? Do you use a wheelchair? I never owned a wheelchair as a child/young adult and never expected to but am now very dependent on one. What has shocked me is the sharpness of the decline. I use to drive and now that is clearly out of the question.

Is your condition still getting worse and at what sort of rate? Have you had other problems like with speech and drooling etc?

Best wishes,
JohnW

Hi JohnW

Sounds like you have a really supportive employer wish my jobs had been able to be that flexible what do you do?

In answer to your questions no I didn't used to have spasms as a child or certainly not that I remember. Now I find they are worse at night or if I'm tired, also if I'm tired my legs will get the shakes or if I'm over doing it my legs will sometimes shake.

I've had a manual wheelchair now for about 5 years and like you as a child had never needed one. I am currently in the process of fundraising to get a power assist wheels system fitted to my chair to make it easier to use and less strain on the wrists but I need £3,536!!! Maybe I should start doing the lottery!!
Though I can still walk and when I walk I use a stick I tend to use my chair when I want to go out for the day or shopping.

I never have driven as I also have non epileptic seizures so that has never been an option for me so I can't miss what I haven't had. I suppose things are still changing and possible getting worse but I've got so used to it I tend not to notice so much now. When I first started to get problems it seemed every week something new started that hurt more and was worse than whatever I'd dealt with the week before.
I probably drove the helpline mad with my tearful phonecalls about why this was happening and how did I deal with it and cope etc!!

Speech and drooling have not been a problem for me it has all been tiredness, pain, back problems, spasms, rsi type problems due to using chair, more falls, lost of balance when carrying things etc that I have had really. And I've also just had to have the first lot of bunion surgery done as I was told if I didn't I would end up in the wheelchair full time. Am still recovering from that so not sure what effect that will have on the cp as yet as they have moved toes etc.

Take care

Helen

Panther,
I am a financial mathematician. So, being so specialised, my company is probably more willing to make accommodations for me(added to which it is a naturally pleasant environment already).

£3,500 seems very expensive for a wheelchair. I bought mine for about £2300(and that has served me perfectly) and have subsequently seen (new) wheelchairs going for £1600(on the internet from a small UK company owned by a disabled person but can't remember who). Let us face it, an electric wheelchair is an extremely simple device. So I would urge you to have a good look around. It is a bit like ramps. You can pay £500 for a removable ramp or you can pick up a bit of wood off the street and they serve exactly the same purpose to the same standard. Quite frankly, irrespective of whether you have the money or not, I resent paying those prices as I am just being ripped off.

Best wishes,
JohnW

Hi JohnW

I have looked around and unfortunately this is the thing that best suits my needs it isn't a new chair but a new set of wheels that have a battery inside them thus making it electric and because it can be fitted to my exsisting chair it makes more sense rather than having two different chairs. I have got some discount on it since I've been given the quote so will see how things go.

Like you I don't think prices should be that high but the arguement is that they are catering to a small market of people. Again I disagree. But the company I wish to buy from are pretty good I brought my chair from them also about 5 years ago and I've heard good feedback from other people about the Alber range of products so think I'm probably going with the right thing.

Helen

What I would like to know is whether other people have had a similar experience where they have had a severe deterioration in their physical condition over a short space of time and whether things stabilised. I have seen several neurologists over several years but the drugs they prescribed didn't help and made my tiredness worse.

John

Hi John,

this is my first time on this forum...when i was 27 [i m 39 now] i had have experianced sudden detorioration in my mobility level and sudden back pain.

At the time my mobility level was completely 'normal' as i was both training as an NVQ developmental care student and doing volentary work with 'special needs' kids both saturday and holiday play schemes.

Then after one easter play scheme i found that i was suddenly completely exhausted and i had lower back pain for first time in my life.the first day i put it down to a mixture of spending a week doing 1 to 1 care with a hyperactive adolescent that was into basketball [bless him] and drinking to much at friday night end of play scheme gathering for volentiers.

but the pain in my legs,loss of balance,exhaustion continued.

[this is going to sound weird but though i was born premature with a low birth weight of 2 lb 7 oz my adoptive parents did nt tell me anything about my early diagnosis of cp.I obviously knew that i had one leg shorter than other and knee;s turned in but did nt perceive myself as disabled].

So at the time i was just thinking
'what the ****s going on'

i was unable to get to my course placement [i was living in a 3rd floor flat] and suddenly stairs where a problem,suddenly everything was a problem.broke up with my girlfriend as she could nt understand how/why i was suddenly unable to do there things that i d normally have done.

now i walk with cane but only time i get out is when my home-care comes [bless claire].

in terms of medication to deal with pain i've had a intercatheral medotronic pump implanted which pumps out
baclofen and morphine.i also take pregablin and doclofenac sodium.

i've found the pain care specialist friendly/approachable but unable to pedict if increasing dosage from pump would help or not.

had appointment with neurologist yesterday and she was less than helpfull.
'well yr problems are to do with low birth weight'
'uh ok dr have yu any idea whats going to happen next?'
'no'
[oh great]

sorry these words ar nt that coherant but i'm so tired all the time.

best wishes to all

stevie

Hi Stevie

I fully understand where you are coming from in my early twentys I started to get a lot of pain in my legs that hadn't been there before and a lot of lower back pain also a new thing. When I was about 24 or 25 I woke up one morning and suddenly found I couldn't move out of bed.

I spent a week off sick from work and crawling round my flat to do anything or sleeping. I think the thing that made me force myself out of bed every morning was that the cat needed feeding!! Like you I lived in an upstairs flat and when this happened it made me really take stock of my life I put in for a transfer with my housing association and a few months later was offered a bungalow luckily just round the corner from where I lived.

As you've probably seen from my earlier post I changed jobs and eventually had to stop work altogether. I now have good days and bad days I don't think the tiredness every really goes away you just learn to manage it a bit better but it's always there in the background. I guess I more careful than I would of been as I don't want to end up unable to move out of bed again as I'd over done it.

Just wanted you to know you are not alone
Take care

Helen

stevie,
How is your upper body coordination? I have found neurologists very unhelpful; I suppose it is not their fault, we simply do not understand how the brain works and for something like CP, if the first two or three tricks don't work, you are on your own.

Has your general coordination got worse? Has what you might term the 'neurological' side of your condition got worse as oppose to orthopedic problems?

Panther,
How long have you stopped work? How has your tiredness changed since then? I must confesss, I am feeling a bit frustrated as I went into work on Monday after a weekend of doing nothing and still felt tired. By midday I had to leave and take the rest of the week off. I just feel it is ridiculous being 31 and tired after a 4hr week.

Best wishes,
JohnW

Hi JohnW

I stopped work probably coming up a year and a half ago. My tiredness levels are still difficult to control at times sometimes I can do a lot other times not much. But I've found by not working I can pace myself more so tend not to over do it to extreme levels. Winter months are normally the hardest as my legs don't like the cold and hurt and are more stiff etc

I guess I've also learnt to not give myself a hard time if I need to change plans because I'm so tired etc after all there's always tomorrow. It helps I guess that one of my closest friend works with people with disabilities doing tailor made holiday service and also has a number of years expierence and understanding of disability which does make life a whole lot easier when you have friends that can understand how things affect you and work with or around it.

Hi
I am new to the forum so please bare with me.

my cp started to get worse in my mid thirties up to this time i did not need sticks or a chair this was 1996. Due to back pain I started using a stick and had hand controls fitted to my car due to spasms in my legs. I continued to work until 1999 when things got too bad, I was taking lots of pain killers to keep working but was also under alot of stress due to bullying. I was determined to beat the bullies but in the end my employer used my health problems to force me to retire on health grounds.

My cp has continued to get worse yet no one has offered/been able or could care less!!! i saw a cp specialist who put me on even stronger pills these have affected my stomach so bad that i can no longer go out for fear of accedents (if you get my drift). My gp says I should be grateful that I had the opportunity to do something or that my condition has got worse because I have been too active.

The latest thing the cp specialist did was to make some calipers that go from the top of my leg to my foot with special shoes. When I was a child I was told calipers would be no use to me now at 45 I am told to wear these monstosoties I cant even get them over my trousers let alone stand or walk in them!!!!

In the last seven years I have gone from having a job and being able to look after my family to someone who cant bare to go out for fear of messing myself or for not being able to put a smile on my face when I see some one I know or for being so bad tempered because of the pain that my wife and children wont go anywhere with me.

I have been lucky in my life (if you can call cp lucky) but at 45 I feel like a complete waste of skin and bone. Doctors and cp specialists soon cast you aside and there is never any continuation with treatment or someone has left and they cant find any notes or your gp tell you not to bother him just phone for a prescription for anything you want.

Last year I was told I may have cancer or kronjes desease then I was told I had, not next week I suddenly have to go to have the tests for cancer and kronjes again because after 12 months they have seen something in my notes that they missed 12 months ago.

I always thought that even though I had cp it would never get worse and I would be the same as always until at least my sixties but unfortunately its not the case. Cp scuppered my early life and it seems that what is supposed to be the best part of your life, middle age is actually going to be the worse if you have cp.

Hi Panther,

Thanks for your kind words

Hope that things are going well for you.

Apologies that its taken me so long to respond but i ve just been so exhausted this last week.

best wishes

stevie

Panther,

Your post struck a chord with me; I'm 25 and have spastic diplegia which has deteriorated in the past 6 years. When I was younger I was more mobile, especially as a child. I didn't use a wheelchair, except for longer distances, holidays, etc. I was also able to walk unaided. Now, the muscles in my trunk have weakened and stiffened, so that my posture is very bent, practically 90 degrees! I use a frame inside the house and a wheelchair when I go out. The pain I get and the related stiffness is really bad, at times. It is incredible how stiff my muscles get; never this bad when I was younger. I am on baclofen and doing physio, but it has little impact. I have poor stamina and tire easily, even when I'm not doing much. I have read about physiological burnout in c.p and I believe this is what I have. A neurologist said to me that sometimes c.p deteriorates but they don't know why... I think that they've only found this out in the last 10 years or so. It's comforting to know that I'm not the only one who gets so tired... I find it soooo frustrating because it makes me feel like I'm about 90!!
I used to have non-epileptic seizures, too... I later found that that these were related to severe depression. I've got over that now tho. Do you know why you get seizures?

All the best,

Sam

Hi Sam

Oh good another person that feels like they are 90 years old glad I'm not alone lol!! I feel a bit like that today. I think you are right they have only discovered about problems with cp as we get older in the last 10 years so it is difficult to know what to do for the best sometimes as there is still so little information out there.

With regards to the non epileptic seizures they decided that my seizures were stress related so I've had to learn not to get so stressed by things and I have managed to do that fairly well especially once I left home!!
I do still have seizures occasionally as I'm also prone to them if I have a really high temperature so have to be careful if I'm coming down with an infection or something. The first one I had was when I was coming down with a bad throat infection and also round about the time when someone I was close to in my family had died. They think the combination of the shock and the high temperature due to the infection triggered the first one. So now I'm extra careful if I'm ill.

At least you now know you don't feel like an old person on your own!!

Take care

Helen

Hi Helen,

How are you? Hearing that you and Sam feel 90yrs old as well, helps. Everyday recently seems to get harder and harder physically and emotionally , Feel drained. Went to the neurologist on monday, he wants to do a full investigation into my CP as no else has seemed to. I am angry, annoyed and upset but there's no one to blame. Got to have a brain scan to see if 2 other conditions haven't gone unnoticed. Wait for that and next appointment with neurologist isn't until October discussing the next step. It's all wait , wait, wait.

how's your legs/foot?

Take care

Amy
[/quote]

Hi Amy

Good to hear from you don't worry about feeling 90 years just join the feeling 90 years old club with me and Sam lol!! No seriously I'm sorry to hear you are struggling so much.

I suppose in a way it is good that they are investigating your cp fully I'm not sure if they ever did that for mine. I just know that there was lack of oxygen when I was born and that I was born early. I know all the waiting isn't good or fun but maybe it will help. Don't think I've ever seen a neurologist in conection with my cp.

As for my foot it's getting there slowly and painfully I guess I won't bore everyone here again but if you want the full update see my post on bunion surgery and cp!!

How was your holiday didn't you go on holiday for a few weeks?

Take care hope you don't have to wait too long to get all your results back.

Helen

Hi Helen,

My holiday was great thanks, went for a month. Travelled to Canada on my own, friends met me at the airport and I stayed with them. My friend turned 50 when out there so in celebration we spent a week in Florida[awesome] and did a 5 day cruise to Mexico. My friend and her family treated me as one of them. Had a lovely time. Still getting used to being back,settling things in my mind of what the neurologist said, and continuing with my study which seems like i'll never finish.

how's things with you?

Take care

Amy

Hi Amy

I'm glad your holiday went well. You are braver than I am I hate travelling on my own and refuse to do it. Luckily some friends of mine have started a company doing holidays for people with disabilities so maybe I'll get to travel a bit more now as I can get them to come with me!!

I'm ok just shattered as I've been packing loads of boxes as they are going to start doing all the work on my bunaglow that was agreed for by the disabled facilites grant. They were due to start at the end of the month but they came out on Thursday and said that they are hoping to start next week probably Tuesday.

My foot is getting better but is still painful I think because with how they have pinned my big toe I'm no longer able to go up on my toes like I used to when I walk and so where I'm still trying to do that when I walk as I know no different it puts pressure on my toe and makes it ache and if I ignore it then it gets painful and bruised.

You were away when I did my first outpatient appointment but when they x rayed my foot one of the pins that they've put in as moved anyway so I find out when I go back in July and they x ray again if I will need to go back in and have one of the pins taken out!! So I'm definately not up to doing the second lot of surgery on the 21st June which is what they wrote and offered me!!

That's all my news for now will let you know how all my building work is going if I get chance to be online in the next few weeks

Take care

Helen

Hello Panther and everyone
I have been reading all the posts on ageing and I seem to be much older than everyone else at 61 so I thought perhaps a few comments might be useful.
I was born premature and had a twin and which did not survive. Diagnosis was woolly and anyway in thos days - just at the end of the war it doesn't seem to be that there was a very good attitude to disability and things tended to get hushed up. My lack of ability at games and gym tended to be put down to laziness although I eventually saw a neurologist because the school wrote a note to my mother. This doctor was useless and basically said yes there is something wrong but we can't do anything about it so try not to take any notice of it.
Basically I have had a good life, worked in offices etc until I married have two wonderful grown up children so am very blessed. However at various points in my life there have been definite deteriorations, particularly after I sprained my left ankle (thats my weak side) and this made balance etc much worse. I can tell from past photos that my posture is much worse and nowadays my balance is awful and I find it impossible to stand for long periods without holding on to something. Also I am getting very tired and stiff and achy. I used to walk quite a lot but at the moment have lost confidence in my ability to stay upright or get up again if I were to fall on the street. I have two wonderful young grandchildren who are very considerate to their granny but it pains me that I cannot do more with them. Also I was very wary of carrying them when they were tiny because I thought I might fall with them and they would get hurt, whereas with my children there was no real problem,
I have tried various durgs over the years but they all knock me out and am currently having botulinum injections which help a bit.
I definitely think that stress has an adverse effect on cp symptoms as we have recently had a crisis in the family and although that is now partly resolved, my cp has been worse since then.
So all in all I think things do get worse but on the other hand there is more treatment available nowadays and I have always found physios to be by far the best people to ask for help. I agree with the view that its really a matter of pacing oneself and not worrying too much about what you can't do and just concentrating on what you can.
Best wishes to everyone
Belle

Hi Belle

Glad you posted as you said you probably are older than a lot of us that have been posting on this topic. It was intresting to hear how things have been for you and how you have recognised things that have changed over the years. It would be good if you could post some more in the future maybe?

I agree you are right there is a lot more treatment around now than there was, but that doesn't mean you can get access to it. I got the impression from your post that you have input from a physio is that correct? If it is you are very lucky. I had no input from a physio from the age of 16 till my early 20s Then I have had any input from about 25 to now and I'm now 32. Basically the hospital physios just turned round and said you have cp what do you expect us to do? You know your condition better than we do we don't know what to do learn to live with the problems you are getting as they will probably get worse!!!

Unfortunately when you start to get those kind of attitudes it can make things a lot harder to deal with as you are getting no input at all and I know of a few people with cp abput my age who have had the same response.

Take care

Helen

Hi Belle

I had to smile when I read your reply like you I don't like asking for help and have in the past tended to try and do the most impossible things like move a wardrobe or something!! And then wonder why I can't do it.

But over the last few months I've had to ask people to help more as I recently had some surgery and am still recovering. Because of the surgery I can't walk very far without pain at the moment am still on crutches some of the time and in a special type of shoe while my foot heals.

A friend of mine actually said to me this afternoon I'm so glad you've started to ask me for help more I've never liked to push it in the past and it's good you've now realised you can ask for help.

As for the physio side of things like you my gp is very supportive and reffers me to these things but when I get there the physios themseleves tell me they don't see the point or know what to do!!

Take care

Helen

Hello again, Panther
Thank you for your prompt reply.
I used to live in the NE near Newcastle and hospital services there were efficient but extremely high pressure. Now that we have moved to the SW things seem a lot calmer. I have a very understanding GP who refers me to the physio when I request it. I realise that I am extremely lucky in this respect. I do not have physio all the time - just at times of crisis or when things seem to be taking a turn for the worse as recently.
One of the things that I have found hardest is accepting that there are times when I need help. Its not that people are unwilling its me thinking that I should be able to manage all the time. When I was young it was not that obvious that there was much wrong I just "walked a bit funny" and looked daft when I tried to wear high heels - stilleto heels were all the rage unfortunately for me. Therefore the recent deterioration has come as a bit of a shock. The physio is suggesting a splint and possibly special shoes but for now I'm supposed to do regular exercises.
Take care
Belle

Hello again Panther and everybody

I'm sorry to hear that you've found the physios rather negative. All the ones I've known have been big on the sense of humour which helps a lot.
I am notoriously bad at doing regular exercises. Also it was suggested that hubby could get involved and 'help' by keeping me in the right position. Unfortunately he is notoriously bad at staying awake on the sofa long enough by the time he gets in from work. We're working on it.
It is only comparatively recently that I have actually referred to my self as having cp at all. Because my family glossed over it so did I but more recently neurologists have been more definite and also said that it is both sides whereas I have always thought of it as a left sided thing.
Best wishes - its good to be able to exchange experiences
Belle

Hi Belle

I think the not being very good about keeping up with your physio is a standard thing I know I hated doing it as a child and as an adult I'm not much better!!

I've tried a number of things but now tend to stick with going swimming regularly for exercise and aromatherapy massage for help with the pain in my legs and back. Have really missed not going swimming at the moment can't wait for the consultant to tell me it's ok for me to start again even if it will only be for a short time as I have got the second lot of bunion surgery to do.

Take care

Helen

Hello Helen
I enjoy swimming also and keep meaning to get going again with it. I find its OK once I'm in the pool but I'm not too keen on the walking to the pool bit as it tends to be so slippy. However this has not so far prevented me from doing it. Similarly I am not very brave about icy conditions so enjoy the summer months much better than the winter ones. Now that I don't do so much walking I am quite concerned about getting enough exercise although there seems to be conflicting advice out there about whether to do as much as is feasible or be careful not to do too much because of putting too much strain on the body. No-one seems to agree. I am currently looking into massage and think it might help if only because a bit of pampering is always welcome.
Take care
Belle

Hi Belle

Hope you find somewhere that you can get massage done I find aromatheraphy massage really helps before my surgery I was probably going about once every 6 to 8 weeks. Some sessions were more benefical than others it all depended on the mix of oils used and how my body responed etc.

As for the exercise I think you learn your own limits and just have to learn to work within them and do what you are comfortable with. It's one of the things I've learnt over the years is that cp is very individual to each of us that has it and I think this is why there is not much information out there especially on the ageing side of things. As everyone responds and reacts to things in different ways so the problems they can expierence are not always the same.

Like you I don't like the cold and the damp that is when my legs start to really hurt. This winter could be interesting as I'm aware over this last week since I've been able to put shoes back on my walking has changed from what it was.

Take care

Helen

Hello Helen
Very glad to hear that you are able to get shoes back on. Has the surgery been very painful. I've known others who have had bunion surgery and they found it quite painful and took things easy for some time. The aromatherapy sounds nice and will try to find someone local who does it.
Do you use public transport and if so how do you get on? I used to use the london underground regularly but I am not sure I would like it nowadays. Just losing courage with increasing years I think!!
All the best
Belle
[/quote]

Hi Belle

The surgery it's self wasn't too bad and I suppose I have got back on my feet fairly quickly afterwards but that's probably because I didn't really have a choice I live alone and even after the surgery social services felt I was too able to warrent them putting in any help!!

I am finding it more of a struggle now though as the surgery has meant I've had to change the way I walk. I used to walk up on my toes but because they have put pins in my toes I haven't got the movement especially in my big toe to go up on tip toes. This has meant that I now seem to be doing what I keep describing as a 'stiff legged walk' which I'm finfing is putting a strain on my back and my hips. Also I only seem tobe able to walk short distances before my big toe especially starts to hurt.

It's difficult as I don't know how much of this is permanemt and how much is just till the pins settle down, but there is no one to ask as the consultant didn't know what affect the surgery would have on my walking and my cp.

I just think that when I have the other foot done if it heals in pretty much the same way as this one has then I may have problems and need to use my wheelchair more.

As for using public transport I only use the train now and then and only when I have someone with me.

Take care

Helen

Hello Helen

Hope all is going well with your toes and that you are finding ways to cope with the results of your op. I always think it takes longer to recover from surgery than you expect and if you are having to find new ways to stay mobile it must be exhausting. How have you been in all this hot weather?

I had a bad day yesterday and am completely at a loss to know why but I just felt clumsy and out of sorts from the moment I got up in the morning. I usually have a glass of wine in the evening - really only one - but am beginning to wonder if that really is becoming a no no. No-one seems to mention alcohol so I was wondering if you had any views on it.
Cheers
Belle

Hi Belle

We have noticed that there are problems with my cp after the surgery unfortunately. I spoke to a friend of mine last week she used to be my physio and she said how my walking has now changed and the strain on my back and hips was a probable consequence of the surgery and she feels that when I have the second one done then I will find it either very difficult or impossible to walk.

Sorry you had a bad day yesterday as for alcohol I don't drink but mainly because I don't like the taste!!! And I suppose that does have it's advantages as I can take the painkillers when ever I need them!!

I don't like the heat too much and these last few days have been difficult as I have builders in making my bungalow more wheelchair accessible so lots of noise and mess to cope with too!!

Take care

Helen