Hi All,

I have mild Cerebral Palsy down my right side; it’s always been extremely mild so much that it wasn't spotted until I was 25 years old. I know Cerebral Palsy can’t get any worse, but my shaking and spasms especially in my hands have become much more apparent over the last year and a bit. And that's not all I was diagnosed with bowel spasms which I was told is connected with the CP, for this I take about 19 pills a day mostly painkiller to keep the pain at bay.

I was just wondering has anyone else experienced anything like this, and is it a common thing where CP is concerned?

As far as the more apparent spasms and shakes in my hands, is there anything that can help calm down my hands? Most days I can hardly grab for a glass without chucking the contents around myself, which as you can imagine can be frustrating.

Is there any information available that is specifically about CP and Aging?

Geraldine

Hi Geraldine

I have a different type of cp too you so can't help much on that side of things. But there is a factsheet produced by scope on cp and ageing. I think if you go to the information section of this website you can download it.

Hope it is of some help or at least gives you a starting point to try and find out more information from your gp or someone.

Helen

Hello Geraldine and Shell.

As Panther says, Scope do produce a factsheet titled "an introduction to ageing and cerebral palsy" and you can download this from the website at www.scope.org.uk/information/factsheets.

I hope you find it helpful.

Kind regards

Forums Moderator

Hi Geraldine

I am new to the forum and just wanted to say Hi. Like you I have 'mild' CP all down my right hand side. I was diagnosed just over a week ago at the age of 29 so know little about the condition at the moment. I am extremley interested in your post as I too would like to know more about ageing with CP. My physical functioning is deteriorating, the rate of which is worrying me at the moment.

I have noticed that most information relates to younger people so I would be very interested if we could share, and if other people could share, any info/advice etc that would help us 'older' ones!!

We seem to be on a similar par with the amount of painkillers - do they work for you!?!??! Can I ask Geraldine, do you take any muscle relaxant drugs?!?!

Best wishes
Shell

Hi shell

i to have mild cp it only affects my legs i do take 12 1/2 tablets aday and pain killers if i need them three of the tablets are muscle relaxants and most of the time they work i do have my bad days were the only thing i can do is lay down i hope this helps.

jazz13

Hi Shell,

I'm 30 now, so I've known about my CP for five years and know where you’re coming from. Its not easy at any age to be told you have CP, but I think when your an adult and you find out that you have had CP all your life then it sort of explains alot. But at the same time can be very scary especially when like you said "your physical functions are deteriorating”. I have found out that it’s not uncommon for shakes and spasms to become more apparent as you grow older, but there’s so little information on CP and Ageing, I understand that it’s only in the last few years that this topic has been really researched properly, but there’s still very little information. And it’s got frustrating when nobody can give you a straight answer, it’s all maybe, if, but, not sure or don’t know. Or my absolute favorite response, it’s too soon to tell.

I really get what your saying and I was kind of relieved when I saw you where 29 when you where diagnosed, because as far as I know there aren’t too many people who are so lately diagnosed with CP. Because most are diagnosed in childhood, and that’s why a lot of the information is all directed toward children and teens which isn’t very fair for those of us who are adults and wondering what does that mean for us.

The pain killer cocktail I take for my bowel spasm condition which is the latest medical problem which has be contributed to the CP works really well. A few of the pain killers are morphine based tablets which means they really cut out the pain which is a real god send for me because last year I didn’t have them and spent most of the year staring at four walls in bed all the time because I couldn’t walk about or move much without extreme pain. So between the morphine based tablets and the other pain killers that I’m now on, I’d have to say they work really well, sure I still have bad days but after the last year I put in, I can take a few bad days as long as the painkillers keep working I should be fine.

I don’t know about you Shell or the rest of you who so kindly put a response here, but as I am getting older and between the tablets and everything else I get so tired these days really easily. Like I have very little energy all the time and sometimes my right side especially gets sore and tired is this just common with CP and Ageing, I wouldn’t be surprised if it was.

I use to take muscle relaxants for awhile and yeah they did work, and I could get them again if I wanted too, it’s just do I really want to add another pill to my cocktail, sometimes I feel that when I walk I must rattle lol with all those pills inside me;) Although I must say the relaxants sure do calm the shakes right down which is really good for us, like you want to be able to eat your dinner not wear it:)

How about you Shell, do you take the muscle relaxants? How are your pills working for you? If you have any questions ask away, if I can I’ll answer and if not there’s plenty here that maybe able to help:)

Geraldine

Hi Geraldine

I was diagnosed with cp as a child but in my early 20s started to get problems that were put down to ageing and cp. I now say that I'm a classic cp and ageing case!! As I don't know if you read the scope factsheet on cp and ageing but I seem to have most of those symptons!!

Tiredness does seem to be a major factor with all this ageing process I ended up stopping work just over a year ago as I had no eneregy to do anything else except work I'd spend my weekends in bed recovering for the following week, and I decided I wanted to use the energy I had to do other things while I still could.

I tried muscle relaxants but they relaxed my legs too much and sent to into really bad spasms and I couldn't even stand up!! I now take a combination of paracetamol and aspirin during the day and codiene phosphate at night. None of these I take regularly it's only as and when I need them. As I'm stubborn and senstive to tablet doses I try not to take them to often and go dpwn the route of sheer will and determination.

I can understand how hard it is to deal with only being diagnosed as an adult as just before my 17th birthday I was diagnosed with epilespsy and that was really hard ot deal with. By the time I was 21 they realised they had misdiagnosed me and I actually had non epileptic seizures and didn't need to take all the medication I had been put on at 17.

Take care

Helen

Hi Panther,

How are you doing? Out of curiousity, what muscle relaxants did you take? Wondered if any would help me.

Amy

Hi Belle

About four years ago I eventually got funding with help from my local social services to get a light weight manual wheelchair as I was finding walking any distance difficult. I was finding I'd get to the shopping centre by bus or taxi and then I'd only manage 2 or 3 shops before I was too tired and wanted to go home.

I don't use the chair all the time just for days out and odd times indoors if my legs are really playing up. It might be an idea I guess it would help you to keep up with active grandchildren too.

Take care

Helen

Hi Amy

Today isn't a good day I've spent most of it lying down. What about you? Over the years I've tried Voltarol, Solpadol,Naproxen,Baclofen,Buscopan,Tizanidine,Propranodol,Ibuprofen painkillers and Co-codamol painkillers, Tramacet painkillers and something else which I can't remember the name of!! Oh and Amitriptelene the antidepresspant as that was suppose to help control pain in low doses.

Nothing has really helped a lot most of them I lasted a few days occassionally a few weeks partly because I seem to be sensitive to tablet doses and even the smallest amounts sedate me or because they just made the pain worse and the spasms worse. At present you can't see my legs go into spasm but I can feel it.
Can't remember which ones it was now but a few of them just made my legs relax that much I could even stand. All I could od was sit on the floor and watch my legs go in and out of spasm!! It wasn't nice.

Try talking to your gp I think the common muscle relaxant for cp is Baclofen.
I have found that aromatheraphy massage helps short term with some of the stiffness in my hips and stops the back pain.

Take care

Helen

Does anyone have any advice for a granny with mild cp down the left side.
This caused little trouble in my youth but nowadays is increasingly making walking any distance difficult and particularly difficult when trying to cope with active young grandchildren. This was not a problem that I ever envisged as until recently I never understood that cp symptoms were likely to get worse with age.

I have tried muscle relaxants but don't really like taking them and am currently having botox injections which help a bit. I think that declining self confidence is a factor in how I cope from day to day.

Any comments please.
Belle

[quote name='panther' date='Mar 15 2006, 06:00 PM' post='4401']
Hi Belle

About four years ago I eventually got funding with help from my local social services to get a light weight manual wheelchair as I was finding walking any distance difficult. I was finding I'd get to the shopping centre by bus or taxi and then I'd only manage 2 or 3 shops before I was too tired and wanted to go home.

I don't use the chair all the time just for days out and odd times indoors if my legs are really playing up. It might be an idea I guess it would help you to keep up with active grandchildren too.

Take care

Helen
[/quote]

hi thanks for the advice.
i have been advised by my personal trainer to see my gp, as he has noticed some changes. i have an appointment and will discuss things with the gp, and my trainer has said he will help me push to get things sorted before september.
chris

Hi Chris

Could you not talk this through with your gp? Or even ask your gp to refer you to a physio just so you can get some advice. Or even phone the local hospital were you know physio is based and ask them, they may say your gp needs to refer you but at least you are getting some professional advice.

Although I don't have physio input anymore I've found that the physio departments are usually happy to give advice occasionally and the gp is often happy to discuss things or make refferals. It's just that I've discovered you have to be the one to know what you want then push to get the advice you need.
Explain that you want the input before September and see how things go.

Hope that may help you and good luck

Helen

hi im new to the forum (my real names chris). my cerebral palsy affects mainly my legs - particularly the left (although iam mobile and ride a bike) and fine motor control.
im 20, and in the past year ive noticed my ankles becoming increasingly tight.
i stopped wearing an afo at 18, and dont see a physio anymore.
iam at a dilema whether to go back to splints as iam off to uni in september - i already wear a knee immobilizer overnight to stretch my hamstrings on my left leg. has anyone any advice?

Hi Dean

You've discovered that once you hit either 16 or 18 you fall off the earth as far as all support and health input goes as well.
I'm recovering from surgery and have requested physio input as I know this surgery will affect the way I walk as I'm no longer going to be able to walk on my toes. because the hospital don't feel I need any physio input dispite 8 weeks in plaster the community physio team have said if the hospital can't tell us what they want we don't know what to do with you.
Surely if they are trained physios they should know about cp and be able to work out for themselves what is needed. I'm sure they would if I was a child.

Helen

As an adult with CP, I’d like to say that it’s not only about getting the Botox injections but its more about getting the follow up physio treatment which is crucial and so hard to get. Without sounding bitter about it but children get every treatment thrown at them if they want it or not, then when you become an adult you enter a big black hole where you have to fight for everything. For people with neurological conditions like cp, the long term benefit of having access to regular and ongoing treatments is unquestionable. It’s time the NHS took a long term view rather than going for quick fixes and having a case based target driven mentality.

Thanks

Dean

Hi Tara

I assume you've read through this post before you posted in it. So you are probably aware that there are many of us out there struggling along at all different ages. All of us with problems that we've noticed as we got older.

I noticed problems in my early 20s when I was working in what I realise now for someone with cp was a very physical job. I was working as a library assistant so a lot of standing and walking around carry piles of books etc and I was always the first to volunteer to do extra hours if they were short staffed anywhere.
It was a job that I loved but unfortunately I paid the price for it and after 6 years had to look for a job that was less physical as I was just so exhausted every day.

Have you looked at the Scope cp and ageing factsheet that you can download off this site under information. That could be a starting point. I think that's what I did I went to my gp with the factsheet and said look can you read this and if I make an appointment next week can we discuss what we can do to help with the pain and tiredness and the other symptons that I've ticked on those pages that I feel I'm starting to get.

I know it feels a bit like you are having to do it all yourself and it can feel like a constant battle but it might be worth doing if health professionals start to take you seriously.
I don't want to depress you too much but in the long term you may find that your nursing does become too much. Only you can decide I stopped work about 2 years ago as I said I wanted to be able to have a life and see and do things while I still had the energy to do them. And not spend all my time working and then find when I do stop I don't have the energy to do anything else. But everyone is different.

Good luck and keep in touch on here let us know how you are getting on but remember you're not alone through all this.

Helen

Hi Everyone,

Im 19 years old and have hemi ataxic CP. I was told i may have it when i was about 4-5 (as far as i can remember) but never got an official diagnosis in writing or anything like that, it was only last year when i looked on the doctors screen that i realised i was officially diagnosed and exactly what sort i had. Unfortunately even as a child I didnt get much help, I had a CT scan, an MRI scan, blood tests and a couple of years of physio...every month i think, this was from about when i was 7-9. It was scope then that gave my mum the information about getting me the physio rather than the NHS. It had always been pretty mild, just not being able to run, being a bit on the chubby side, sometimes gettin my words a bit muddled and occasionally shaking.

Im currently in my second year of being a student nurse, which entails spnding 40hrs a week on busy wards in either 8 or 14 hr shifts! Because of the small amount of money we get i often work on the side aswell. This past year i have been getting very tired, have extremely painful knees, especially on my left side, ive had golfers elbow, tennis elbow, bad shoulders, hip pain and all my joints click and grind and make horrible noises. Ive also been diagnosed with irritable bowel syndrome. Ive been backwards and forwards to all 3 of the GPs at the surgery and they will not believe that any of this could be at all associated with my CP, ive even spoken to physio's at work who say i should get reffered by my gp, but no one will! Last week was the last straw, i again visited my GP who told me it was nothing but 'Growing pain' and the best thing to do would be to go back to the gym, and try and spend lots of time on the cycling machine. I dont want to do this becase i stopped going to the gym 6 months ago incase the joint pain was causing permenant damage.

It would be really helpful if anyone cold give me some advice as to what to do, im in constant agony and dont seem to be able to get any help from anywhere. Did anyone else find this level of deteriation at my age? Also I have my CP because they messed up when delivering me, am i going to continue going down hill like this? If so I wont be able to continue doing nursing cos its so physical, and if this is going to get worse should i consider suing the trust that messed up my birth?

If someone could help me i would really appreciate it, Im at the end of my tether and at a loss of what to do now!

Thanks, Tara

[quote name='panther' date='Mar 15 2006, 11:19 AM' post='4386']
Hi Geraldine....Helen [/quote]

Hi i too have mild cp I a 29 and always tired i just had a operation because of my cp to correct my gate . I just wanted to say i enjoyed reading your message as i could relate to it . Carrie