Cerebral Palsy
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CP & Ageing...

CathPCathP Member Posts: 7 Listener
edited September 2014 in Cerebral Palsy
Hi all,
I'm after a bit of understanding, and hopefully some advice.

I'm 34, with CP spastic diplegia. Lived a relatively normal life for many years, but over the past 5 years or so I'm finding it increasingly difficult. Now all I think when I go out is 'wouldn't a wheelchair make life so much easier' due to the pain I'm in and the fact I can't cope with being on my feet anymore after a very short distance. All my life previously I've laughed at anyone who's suggested such a thing as it wasn't 'me'.

I feel very fatigued all of the time. After a days work I have no energy to do anything else. I just watch TV in virtual silence.
My career is very important to me - it is the one area I always felt equal to others in in terms of capability and that is starting to deplete now too. I have the graduation ceremony for my MBA - my 3rd degree - next week and the fact that I'm wondering how many years I will be able to work (in a sit down knowledge worker role) is depressingly ironic.

I'm not one to go on about things like this. But I'm feeling alone. I know no-one with the same condition - I was brought up away from all that... my parents meant well, but I'd love to be able to talk to someone who understands what I'm feeling.

Is this normal for CP? What can I do to improve?
I already have botox, and see a neurophysio every week. I went to see my consultant who just told me 'I think you cope with your CP remarkably well actually', and GPs just don't get it and I feel like they don't even want to know. In the last year I've been told a few times to give up my job.
Surely this is a last resort and there are other options??

I got married last year and would love to have a family, as would my husband. Even the thought of that is scaring me now...

Any advice/anecdotes/whatever! would be well received.

Thanks,
Cath.

Replies

  • CathPCathP Member Posts: 7 Listener
    Thank you Helen.
    It is indeed quite comforting to know that someone else has been/is going through a similar experience. All credit to you for coming out the other end with your head held high and being happy.
    I think I need to go through a similar process of acceptance that I went through in my teen years... and, while doing all I can to stave off further decline, accept that life is changing and make the best of the great life I do have despite that.
    My physio did this morning, in fact, offer me a referral for a wheelchair. But, I'm not pyschologically ready for that yet. I realise though at some point that has to change.
    Thank you again - you have brought me much needed comfort :)
    Cath. xx.
  • pantherpanther Member Posts: 251 Courageous
    Hi Cath

    You are certainly not alone there are many of us out there that are facing and dealing with what you are dealing with.
    I can totally relate to where you are coming from like you I have spastic diplegia cp, live independently, until last year I lived alone then my partner moved in. And I used to work before I had to face the issues you mention in your post.

    For a long time I pushed myself and felt I had a point to prove I loved my job and regularly used to do extra hours. Then I found I was starting to get increased pain in my legs, suffer with alot of fatigue and find walking up the stairs to my first floor flat where I lived then was getting more and more difficult.

    I tried a number of different tablets to help control the pain and for me it's only been in the last few years I've found a combination that helps. I also spent many an evening upset and ranting down the phone to Scope Response helpline in an effort to understand what was happening and why it was happening.
    I also tried physio and many alternative therapies in an effort to help the situation they all worked in their own way but much of it was short lived.

    Despite all of this I wouldn't slow down and continued the push myself to do the same as what I'd always done. To the point that I was getting home from work too tired to even cook a meal some nights and would be in bed by about 6pm I also spent most of the weekend when I wasn't working recovering from the week at work. Eventually I had a wake up call I woke up one morning and found I couldn't stand or walk I spent a week crawling round my flat as I was just in too much pain and too exhausted to do anything else even then I was too stuborn to ask for help!!

    It was the wake up call I needed though and I put myself on the housing association transfer for a ground floor property. I also spoke to the jobcentre who told me about Access to Work where I could get help with travel to and from work as walking to and from the train station every day was wearing me out even before I'd got to work. They also told me through Access to Work I could have a support worker support me in my job. As I worked for local authority at the time they were very open to doing whatever they could to enable me to stay in my job and I started having taxis funded for me to and from work and a support worker to support me for 15 hours of the 20 hours I was working.

    Eventually I moved house to a one bedroomed bungalow and I also changed jobs to a job with social services where I would be sat down rather than on my feet all day. The biggest change I made was eventually realise that maybe a wheelchair was needed. A friend of mind told me not to look at it as giving up or giving in but to look at it as my mode of transport as other people do their cars.
    Even then I hated everything the wheelchair represented and used to walk pushing the chair to the shops and pile the shopping in it to walk home. Part of this was also that I discovered the cambers of the pavements were so bad I couldn't wheel a manual wheelchair!!

    I changed the wheels of the chair to E-motion wheels which means I still have the same wheelchair but I now also have battery powered wheels.

    After a few years I got signed of work with work related stress in hindsight social services was the wrong job for me I got to emotionally involved. After 6 months off sick I went back to work part time doing 20hrs a week in a shop on the till so I could still be sat down. Again after a few years the old feelings of bad fatigue and pain came back. I was lucky again my employer was supportive and I reduced my hours to 16hrs a week but after about a year and a half I had to make the decision to stop work as all the old problems came back and I decided I wanted a life not just a life that was filled up with work because I was to exhausted to do anything else.

    I now do various voluntary things most of which I can do from home on an as and when they are needed basis. I'm not saying that stopping work and having the wheelchair for when I go out shopping etc has solved all the ageing issues it hasn't but it has made life easier and I am now able to do a lot more than a few years ago. Yes there are still good days and bad days and the winter months are always worse but I no longer feel I have a point to prove and that I am less of a person for having made the decisions I've made.

    I hope what I've said helps you realise you are not alone with these issues and it maybe helps you make some decisions. Take a look at Scopes CP and Ageing factsheet from the information section on this website it's a good starting point for getting GPs to understand the issues you are dealing with.

    Take care
    Helen
  • TimHarrisTimHarris Member Posts: 1
    I have just read both your post and I am very glad I did, I have what I have been told by Doctors as very mild cp, and it was about 10 years ago that I started to get very swollen ankles and painful joints in my legs to the point I found it difficult to walk, when I saw my Doctor about this I was told I must have sprained my ankle, it has now been like this as I said for 10 years and even now when I do go to see a Doctor I just get ask "do you think you might have sprained your ankle", my partner who cooks and looks after the house and makes sure I am ready for work and who I could not live without, made me get a walking stick which I must say I was reluctant to do at first but I am glad i did, and I have even been question by a Doctor about this asking me why I had a stick and was it necessary.
    The nature of my work means I have to work nights and I am on my feet most of the time and I do find it very tiring, when I started with the company I used to have to work a 6 day week, but in the end I had to see my employers about reducing my hours, to which they were very happy to do,
    The only issue I have are with the so called Doctors and Professional who make you feel that you are in the way and wasting their time going to see them.
    Tim
  • pantherpanther Member Posts: 251 Courageous
    Hi Cath
    I'm glad my post was able to give you some comfort you may not feel it now but you will one day make the choices you need to make and also come out the other side. I can now look back and see I made the right choices for me and I now have a life rather than just an exsistence which is what it became when I was working. That doesn't mean there isn't bad days I still have them at times, but now I don't feel I've got a point to prove (though my partner would still say otherwise lol).

    In your first post you talk about children I understand that thought to I like the idea but have serious doubts on if I would cope with a child and the health issues and would it be fair on the child. I think I've kind of resigned myself to the fact it's not going to happen now as age will also start going against me soon as I'm 37.

    My advice now is enjoy life and if you need to make choices/changes to do that make them don't beat yourself up about having to make them. I can look back and say that now but when I was where you currently are I couldn't look into the future and imagine myself thinking or saying that. The changes are hard but once you've made them you wonder why you beat yourself up and worried about it so much before you made them.

    Think of all the retail therapy you can do if you had a wheelchair and enjoy it! Because you wouldn't be as tired or in as much pain as if you were walking.
    If you ever want someone to talk to just post on here I'm often on here.

    Helen xx
  • CathPCathP Member Posts: 7 Listener
    Hi Helen & Tim.

    Thank you again Helen. You know, it would be lovely to meet other people F2F... and ones like you who are generally positive about life (I know I don't sound it at the moment, but really I am most of the time!). I live in Reading... nowhere near you by any chance??
    Ha... I had better not tell my husband about the retail therapy angle... I think he loves the fact that I hate shopping. I used to love it... just not these days, as you can understand :o).

    I'm just v thankful that I drive (adapted car - hands only). At the moment I drive everywhere... even shop to shop in a retail park!

    Tim - yep totally agree re: doctors. Thing is, they have no clue really what its like... and what may be 'very mild' when you're a child enabling you to do a lot, often does not result in 'very mild' in adulthood by all accounts. Doctors really get my goat sometimes... but I wont go into a rant now :).

    I did HBOT a couple of years ago for 2 weeks and felt better than I had done in years. Has anyone ever heard of it/done it? I had more energy (for a few months) than since a teenager... and am now trying to save some
  • caitlin10caitlin10 Member Posts: 6
    hello to you all. im new to all this, cp and chatting online in forums so forgive me if i dont get it quite right!
    my little girl has been diagnosed with cp shes 10 mths old now ive known that something was wrong with her left side when she was around 2 mths old. my gp and doctors at hosptal were brilliant they never once said i was an over anxious first time mum and did a brain scan then an mri which showed some of her brain on the right side didnt grow properly. it breaks my heart that the reason the one side of her head is flatter than the other is because there is no brain to fill it!
    luckily her sight and hearing are perfect and has a wicked sense of humour. im concerned though how it will effect her later in life. ive been reading alot of peoples views who have mild cp, which i believe my baby to have, and alot of them sound depressed or finding it hard to deal with as they get older. is this how shes likely to feel? what do i need to do to make sure she gets the best care from myself, her daddy and her family and friends and other support?
    any advice would be grateful. shes having physio weekly and an OT is coming the end of sept as shes only been eating solids for just over a mnth and thats abit hit and miss still.

    thank you caitlin
  • pantherpanther Member Posts: 251 Courageous
    Hi Cath
    I try to be positive but even I still have my off days especially as the weather starts going cold and damp. Although it doesn't feel like it now you will come out the other side of all these decisions and you will be a far stronger person for it.
    I'm in Buckinghamshire don't ask me if that's near you I have no idea of distance etc I think partly because I don't drive as well as the cp I also have seizures which years ago were diagnosed as non epileptic, but are currently being investigated again as after a number of years with nothing I'm now having episodes that are totally different from before so they think these ones are epilepsy! Luckily my partner drives.

    He did actually say to me last night to say to you if/when you decide to go down the wheelchair route don't just accept the first wheelchair you get offered by the wheelchair service. When I was going through it I tried out a chair I really liked but when the occupational therapists got involved and the decision was made based on how disabled I was what wheelchair I coud have on the NHS they gave me the choice of 2 neither of which would fit through any of my doorways or the rooms in my house and they just shrugged their shoulders and said not our problem!!!

    I went down the wheelchair voucher scheme route and as I'd had to have a social worker reffer me to the wheelchair service she then arranged the extra funding I needed for the chair from other charities and things.
    I got my wheelchair from Gerald Simonds they were really helpful and let me try out a few chairs at home before I made a decision and have continued to be very supportive it may be worth just having a look at their website or making contact with them.

    Take care talk to you soon

    Helen xx
  • CathPCathP Member Posts: 7 Listener
    Hi Caitlin,
    I'm new to this whole forum thing too! Just recently reached out with this post...
    I'm glad the doctors have been good to you - they are wonderful with children... its just when you reach adulthood they're not!
    Of course you're worried about your little girl.. but it sounds as if she has a great personality and a little bit of feistiness, which will do her well! I'm sure with all the support she has with her family she will live a very happy life.
    What advice can I give you? Things my parents did fantastically... they never stopped me from doing anything. Well, unless forbade by a doctor (which was ballet and ice-skating in my case). They let me go to after school clubs of all sorts, even things like gymnastics - I could barely do a rolly polly, but just wanted to be there with everyone else. They never stopped me. It taught me that I shouldn't let my CP stop me from doing anything I wanted to.
    They never described me by any means as disabled - to me or anyone else. They didn't believe I was, and brought me up to feel the same. That is something I'm so glad about now... OK, I feel moreso in my adult years, but I didn't as a child. I went to ordinary schools, and did ordinary things. I was never in any way made to feel inadequate... I now have 3 degrees and a career and salary most people (with or without CP) would yearn madly for.

    Of course... she is likely to get a bit bullied at school. But who isn't? If she didn't have CP but had a big nose it could reach the same outcome. But be supportive, always have time to listen to her... one things I always wanted as a child was someone older who understood. My parents always told me that it would get better and wouldn't always be that way but I thought they didn't understand... how could they know that? It's not as if they'd been through the same thing as me... so keep dibbing back to places like this. Get people like me who would understand what she's going through to be her 'mentor' if you like... because of course it isn't always that way... and it does get better.

    Treatment? Keep an eye out online for alternative therapies. NHS is really not always the best. Give Linda a call from Advance centres - her son Doran has CP, is 30-odd and was born with severe CP... supposedly to be stuck in a wheelchair not communicating or anything. He recently ran, yes ran!, a marathon and jumps around the place... speaking, laughing, telling jokes (not perfectly, but still does it). He has some learning issues, but my word when you think what the diagnosis (and normal eventuality) was, she has performed a miracle. She devoted her life to helping him and runs a charity doing the same for other parents. http://www.advancecentres.com/. This is where I had the HBOT treatment. She does other treatment as well (breathing exercises etc.) - look at the pictures and stuff on the site - unbelievable! She's always happy to talk through what she does on the phone.

    But yes, keep an eye on places like wikepedia under CP and see what new treatments are about - they usually begin in the US so not advertised over here straight away.

    Teen years may be tough. But, as above, they're tough for everyone. There are just slightly different issues to deal with. And acceptence and self-loving will probably be the biggest. But if you are always positive around her and save your worries for when her ears are nowhere near it will really help. Encourage, love and figure that it might result in a little rebellion. I turned into a gothic covered in black makeup and adorned in leather for a few years... my parents certainly weren't supportive about that! Hindsight tells me that if I felt like a freak I wanted it to be because of something I had control over... hence my 'alternative' dress sense. Grew out of it eventually! :)

    I had a great time in my teens... despite all of those issues. I had boys running around after me like nothing else - even though my CP is downright obvious as soon as I stand up/begin walking. With the right attitide of mind, it really doesn't have to impede much.

    It can get worse (not always apparently) in adulthood. Mine did in my very late 20's. Reading up on it it's because the body doesnt' cope well with the stress it is under from the under-optimal walking/movement etc. and ages very early. But, once I've accepted it and found my 'new way of life' I'm sure it'll be fine. I'm very lucky to have a supportive family and a wonderful husband.

    And it sounds like your little girl has a wonderful family too. I'm sure you'll do everything you can that she has a normal and fun life as possible.

    Come back to me anytime for support. I'll be happy to give you my email address too... not sure if you can 'private message' on here to do that though? Don't want to post it publicly :).

    If I've confused you about anything, or sparked any questions in your mind let me know... happy to help.

    Give her a big cuddle from me and tell her everything will be alright :)

    C. xx.
  • PeteHPeteH Member Posts: 7
    Hi All,
    Just read this and thought it very interesting as i am going through the same thing at the moment.
    About a year ago my walking started to get a lot worse quite quicky and the pain became very bad, i have never been diagnosed officially with cp but various conditions depending on who you talk to.
    I am lucky as i do have a very good doctor who is trying to help as much as possible and i was reffered to the radcliffe in oxford for tests....and tests.....and tests, you get the picture. I was also sent to the Oxford centre for enablement for Physio, this was the best thing that could have happened as i really worked hard and saw good results.

    Like most people work is my main concirn as i am standing most of the day, to this end i now use solid ankle AFO's and just recently Knee braces to lock my knees, they are very reluctant to prescribe KAFO's but i am sure they would be more confortable than my current setup; however it does let me stand for long periods and do my job, my employer has also purchased seating and other equipment which also helps a lot.

    With all the problems that i have at the moment i still enjoy cycling and have just started Kayaking again with a little help from my friends but it does take me a long time to recover afterwards.

    Sorry for the waffle but i guess what i am trying to say is that if you are like me (37) and things seem to be getting out of control just remember nothing stays the same no matter who you are and you can live with whaterver happens even if it means doing things slightly differently than you used to. Keep Happy.

    Just a final note: my diagnosis is now back to Spastic diplegia!!! back where i started :-)
  • pantherpanther Member Posts: 251 Courageous
    Hi Catilin
    There's not much more I can add Cath seems to of covered all of the things that could support your daughter.
    As a child my parents were told I would never walk, talk or sit up luckily I proved everyone wrong, like Cath I went to mainstream schools though they had to fight for it because originally they were told I could only go to a special needs school. I still left school went to college, moved away from home, live independently in the community without the need for support and also worked until end of 2004 when the problems already mentioned in this post got a lot worse. The only thing I haven't been able to di is drive because I also have epilepsy that wasn't diagnosed until I was 17 unfortunately I received a wrong diagnosis and am currently being investigated again as they think it has started again.

    I found that I had friends at school but no one wanted to go out with me outside of school because I didn't look normal because I had a funny walk. My advice would be encourage your daughter to do whatever she wants to do and if she does get picked on at school or find herself in the situation I was in without friends let her know it's the other people that are wrong not her. Let her know she cam achieve whatever she wants to do and that there is no reason why she can't, she just might have to fight that bit harder to get there.

    I guess that is my biggest downfall I constantly feel I have a point to prove though I have got better as a adult on feeling I have got where I wanted to be so no longer have to fight and do it all on my own there are other people that are happy to help.

    Just let your daughter know you are always there for her and ready to listen and help her get wherever she wants to be in life. Cath is right services do tend to disappear as you go into adulthood but doctors are good with children so get all the support and advice you can now.

    Take care and remember people are always on here to chat.
    By the way Cath no you can't private message on here or exchange email addresses you used to be able to but then they changed it.

    Helen
  • BaumieBaumie Member Posts: 5
    Hi Cath,

    I am a 36 year old Mum of a 5 year old with CP spastic displegia and you have inspired me.
    Every day I wake up and hope with all that goes against her she will be able to have a happy life. The fact that you have three degree's, a demanding yet rewarding career and a successful love life speaks volumes for who you are. As a parent it is very hard to know if your choices are the right ones. I socialise my daughter with children with disabilities and she is in main stream school. I find it hard to find other kids of around her age with similar disabilities. To be honest she neither fits in either world. She is on a physical level to you, but does get tired and needs a wheelchair some days. Mentally she is bright, but has learning difficulties.

    One thing I do know about CP is that the person with it has the most amazing ability to adapt. People with much worse disabilities are parents. Most able bodied workers spend the night glazed in front of the television.

    With some simple adaptions maybe things could change. For example asking to work from home a certain amount of days a week so you don't have the added burden of a commute, Having a nap at lunchtime - I used to sneak off and have a sunbed and a sleep - not that I suggest you do that, but you get the idea.

    I can only imagine your frustrations, but looking at the problem from a different angle sometimes gives you the answer you were looking for.

    Ask to see a consultant to give you a clearer idea of how much longer you can stay in a sit down position. Do you want to be a stay at home Mum for a while anyway? Take a slight career break. There are lots of different options. I hope this helps and maybe gives you some food for thought.

    You on the other hand have given me the most amazing amount of hope.
    Thanks
    Emily
  • lynn18lynn18 Member Posts: 2
    Hi All Im a newbie here too.Im 47 ith cb and have been experiencing the same problems over the last 2 years to the point i had to give up my job of 29 years at the post office.I found them very unhelpful and unsupportive but ve spent too many months being upset by my treatment from work so try not to think about it anymore.

    I was the same before i left work where i was leaving home at 7.30 getting in at 6.15 and going straight to bed.I couldnt get up the stairs to the toilet at work sometimes so would go all day without a drink so i didnt have to use the stairs thats how ad i got.

    I have had various treatments over the last 2 years physio,CBT for feeling depressed,a scan on my spine,muscle relaxants but nothing helped really.

    I live on my own but have a supportive family which is great i dont know what i would have done without them.

    I started to use a stick last year and felt very selfconcious about it at first but now i dont mind anymore and just use a fold up one when i feel too bad .Nowadays i find i cant go out at all on my own because sometimes my legs just freeze.

    Since i left work though i do feel i have more of a life an also because i havent the pressure of having to get through a day i dont feel as depressed and i feel that when im not as stresed i can get around a lot better sometimes as well as i always have which is good

    Sounds like ive been lucky in a way that its only in my 40s where things have got bad.

    Anyway all of you take care Love Lynn x
  • caitlin10caitlin10 Member Posts: 6
    Thanks for your advice CathP you are an inspiration to all and have helped put my mind at rest a bit. Thanks for the advice on alternative therapies too i hadnt thought about that ive been having a look so as to keep a head of the game so to speak. I understand abit more now why it can get harder as you get older.
    My little girl now has a TAC Team which im very impressed about. Its all been organised very quickly and efficiently im so grateful as me and my partner felt abit lost with it all, though tbh i did a lot of chasing for answers to give her condition a name. Health visitors, Dr's etc all seem to help more once a condition has a name....
    Were just having fun and games trying to rent a property within the walsall borough that is decent enough to live in so that she can stay with her TAC Team fingers crossed we'll get there!
    Hope you are well thank you again for helping me out xx
  • caitlin10caitlin10 Member Posts: 6
    Hi Helen How are you? Thank you for your advice too its so nice to know theres some people out there with CP that seem happy.
    Im glad your parents got you into mainstream school i do think it helps and stops the stigma a bit. Ive put her name down for nursery its not until 2014 lol that seems so far away! And i will do as you say and let her no she can achieve anything - she has got a lot of people for back up too which i am so grateful for.
    People get picked on or bullied for no reason at all nowadays dont they and if she carries on charming people like she is at the moment then she wont go far wrong!
    Besides there'll be a long que of angry family and friends waiting behind me and her daddy to get at whoever upsets her so fingers crossed she'll be fine. It'll end up been me thats going to worry all her life at this rate!! xx

  • pantherpanther Member Posts: 251 Courageous
    Hi Caitlin
    I'm glad my posts were able to help you I'm doing ok at the moment though there is alot going on as I'm going through the incapacity benefit changes to employment support allowance and also having problems as they think I have developed epilespy as well, I'm also having surgery in November so as you can imagine life is fun and games at the moment lol!!

    Over the years I've also tried alternative therapies massage helped for a bit as did seeing a chiropractor and also a healer but over time the affects from these treatments wore off. Now it's a case of listening to my body a bit more and not being so stubborn and pushing myself too hard though I still do that at times!!

    I forgot to say in my earlier post as a child I learnt to swim and then joined a disabled swimming club as the non disabled ones wouldn't take me, but training for the galas we entered helped me deal with the lack of friends outside of school and college as we also used to do some social activities too. As an adult I also started to do adapted dry slope skiing and once went on a skiing holiday. Sometimes groups like that can help as you can meet similar people and learn from then how to deal with things. You and your partner would also meet other parents who maybe able to give you advice which is always a good thing.
    Supportive family is always good just don't do what my parents did and try and be too protective let her breath and learn things and coping mechinisms for herself too, it will help her be independent.
    Take care xx
  • HymerkarHymerkar Member Posts: 63 Courageous
    Hi everyone, I used to be a regular to the forum, but because of another illness, which has affected my sight, I am spending less time on the computer, I have also joined Facebook!! I have been reading scope messages on there but tonight I realised I had not visited the Forum for a long time and I have missed it.

    I was born in 1962 and at 8 months old my parents was told I had mild CP and that I was not expected to be able to walk, talk, dress or feed myself. They were advised to leave me at the hospital and get on with their lives. Thankfully they didnt, and they fought hard to make sure I lead as near normal life as possible. I did learn to walk, dress and feed myself, and as for talking - apparently they couldnt shut me up!

    I attended a special school where I received daily physio and weekly hydrotherapy. There was no choice in the early 60's. I loved it and had lots of friends, but out of school I didnt have many friends as they all went to the local school. I did have a couple of very good friends locally, and to be honest, their parents were very good with me and was only too happy to have me to tea and take me out on day trips. I guess I was lucky. In fact one of those friends who I lost contact with, because they moved away, has recently got in touch via FB and she now lives in Aus.

    After school I went to St Loyes College, in Exeter, where I trained as typist, and telephonist, receptionist. I loved it, although I was upset for the first few days, not being used to being away from home. At St Loyes I met my (now ex) husband, we married at the age of 20 and was happily married for 20 years. Life was difficult as we were both disabled but we supported each other and lived totally independent lives. We decided we didnt want children. I worked at a telephonist and receptionist at a local importers which was interesting. After being made redundant I got another telephony job at the local health authority. From there I moved into the personal department where the job was a bit more demanding on my legs as I had to walk to different offices etc. Sadly I started to feel the strain of going to work, trying to keep the house up together, washing, ironing, cooking cleaning etc and eventually in 1990 I had to admit defeat and retire on health grounds.I was coming home, falling asleep, sometimes even skipping tea. Weekends were spent trying to catch up with the house, and there was definitely no time or energy for any sort of social life. It was hard to accept at first, because I felt that all my training had been for nothing, I also felt I was letting my parents down, as I was giving in.

    During the following months I knew I had done the right thing as I was starting to feel better and being able to live, rather than survive. On that point I have never looked back.

    In more recent years due to having problems with my feet, i.e. bunions (you can read more on here in Bunion surgery by Panther) I had to use my wheelchair more. I went from someone who only had it for the occasional long shopping trip to relying on it most days even in the house. This has given me back and hip problems to the extent that at one stage 3 years ago I couldnt even stand up and had to seek medical help. After a series of hydrotherapy sessions I was able to stand, and started to walk using a rollator. As determined as ever, I have kept pushing and pushing to get my mobility back. A new physio has recently made me realise how important posture is and has sorted me out with a wheelchair cushion which makes me sit straight and has ordered a powerchair to help me in the house as she says when I am tired, and still want to get on with the cooking tea etc, I need to be able to get in my chair as to try to carry on walking with fatigue is doing me more harm than good.

    Unfortunately in 2009 I was admitted to hospital as an emergency after visiting an eye clinic for a check up, they thought I had a brain tumour. What transpired was that I have too much fluid in my brain, causing my optical disc to swell. I am on medication to reduce the fluid and thank fully my eyes are ok, but this problem also causes severe back problems and neck and shoulder stiffness!!!! Nothing to do with CP.

    At the moment I am managing to walk around the house and get around outside either on crutches, my rollator (I hate being seen with it outside, not sure why but my crutches or wheelchair seem more acceptable) or I use my chair. As previously mentioned, when I get very tired in the house I use my power chair.

    The problem I have got at the moment is that the more I walk, the better I feel, I am loosing weight at last, but my bunion problem is back because I am on my feet again. I feel as though I really cant win, but as always, I WILL NOT GIVE IN.

    I hope that I havent made you fall asleep and that someone might find my little life story interesting and helpful.

    Take care everyone, keep smiling Karen

  • SaskiaredSaskiared Member Posts: 1
    Hi everyone I am a 43 year old with CP I have increasing spatial awareness and mobility issues? is anyone else going through the same thing, and if so can you advise me of who to contact i.e. physio?
  • pantherpanther Member Posts: 251 Courageous
    Hi Saskiared

    Are you under any hospital or consultant for your cp as an adult? I know many of us on here aren't but there are others who have been lucky to get input as an adult.

    If not I would start with your gp talk through the problems with them and ask if they could make a refferal to physio for you. Again some gps are good others not so the same when it comes to physios I have been told by local physio you've got cp what do you expect me to do there is nothing I can do get on with it, but then other people are lucky and still get good physio input even though they are an adult.

    If nothing else your gp and possibly physio are a good starting point to get some understanding of what is happening and what you can do to help it.

    Take care
    Helen
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