Struggling with Being Disabled

DeanCutler2 · January 2014

Hi

I am on here to ask for help if that is at all possible.

I am disabled have Cerebral Palsy which over the last few years has changed an awful lot.

I have gone from using manual wheelchair to having to use powerchair and generally speaking needing a lot of help with the most basic daily things to be honest it is really starting to get me down.

I would be grateful if anyone out may have some advise for me that might help me see life from a more positive.

From where I am sat right everything just feels kind of hopeless.

Dean

eranthe · January 2014

Hello Dean! I'm sorry about your condition. Anyway, there are treatment that will help you to cope on that condition. Physical therapy which can help to strengthen your muscle and occupational therapy that will help you to perform self help task. Don't feel hopeless because you can inspire other that has same condition as you.

martynsibley · January 2014

Hey Dean

I have a condition which means I'm always in an electric wheelchair, need 24/7 care and help turning at night.

After school I got a masters at uni, worked for Scope and now run my own business. I drive an adapted car, am engaged to marry, and am off to Japan in a couple of weeks.

Needless to say disability doesn't have to suck! However it is hard. So much to overcome, so much to plan, so many people to meet and so on.

Have a scan through my blog www.martynsibley.com and magazine of lots of other positive examples.

If you'd then like a chat I'm happy to give some time and we'll work up some ideas.

Chin up chief.
Martyn

milo · July 2014

I'm in a similar situation, having gone from fairly self mobile to a wheelchair in the last 6 months and I know how demoralising it feels. My only advice is to not hide yourself away and to ask for help when you need it. My physio has been great at helping me get to grips with the idea that I'm still me but just need more help than I'd always like to admit. In some ways I now do more than before because I'm determined not only not to let my partner and girls down but myself too.

mousie · July 2014

Hello Dean!
My cp has changed for the worse over the last few years! I too struggle excepting the changes. Unfortunately, there does not seem to be any thing out there for support, other than friends and family. My family worry as they see me worsening, so I put on a happy face when around them when inside I am crying.
I just try and take each day as it comes. I dont look into the future, as its too scarey. I try and focus on the things I can do. Yes I am getting worse, but as long as I can still keep my independence that is the main thing. Remember, no two people are effected the same with cp. You wont get every trait, only some of them

andrewday · July 2014

I have only just started my Blog - but personally I am with Martyn, just get up and try and make everyday count - I had ITB http://www.medtronic.com/patients/severe-spasticity/therapy/index.htm 10 years ago and have never looked back.

My cp is getting worst there are no two ways about it and i use my electric chair more and more but it’s a tool because without it I wont go anywhere. - The worst bit for me is my ability not to be able to communicate verbally I feel so isolated at times and hopefully I can meet a few good buds just to boost my online activity and circle of friends.

I do go to the gym most days even if I just play about in the pool with my rubber ring on but that’s how I deal with things

Dean, I cant take you pain away but I may be able to put a smile on your face.

Blog www.andrewday.co.uk – I run my own design company and do everything associated with the web, social media and so on

Thanks

Andrew

milo · July 2014

There seems to be a lot if posts about CP deteriorating with age on here but if you speak to people, there seems to be little support available and woeful lack of research on the effect that ageing has on CP. I find this odd as CP is not a "new " condition after all. Can only assume that as it isn't either curable or a high profile that there is a reluctance to fund studies on adults with the condition

Noah · July 2014

Thanks for your post Milo, I agree more studies should be done on CP and aging. It is clear to me that because we tend to push are bodies very hard and are often under much greater stress due to having to try and compensate, are bodies are often much more prone to ageing/wearing out before our "able-bodied" peers. I'm only 32 and have quite a few age related complaints! There is quite a bit of support out there, its sometimes knowing where to find it......and how to best access it.

If there is something specific that you would like to know about, to help you, you are in the right place to just ask on the forum and one of us will hopefully be able to help. Or I know the Scope helpline team is very good for pointing you in the right direction and in confidence. I have used them myself.

AmyS · September 2014

It is only over the last few years I became disabled, it has taken some time to adapt. Thankfully my local council have been brilliant, I now have a fully adapted shower/wet room. Rails in my corridor (internal) and risers on my furniture etc. This gave me the opportunity to be more independent within my home. This alone has helped me greatly as I am more independent. Good luck, chin up and always remember there's someone else out there either similar or possibly having a harder time.

Noah · September 2014

Thanks for sharing your positive story AmyS, Glad you now have what you need to be more independent. :-)

Struggling with Being Disabled

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