Hi, is there anyone out there with ce... - Living Positively...

Living Positively with Cerebral Palsy

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Hi, is there anyone out there with cerebral palsy?

music55 profile image
music55

Hi, I'm new to healthunlocked which is a brilliant website, and I recently joined the thyroid uk forum as I have Graves disease. I did a quick search around and found this forum for adults with cerebral palsy. I'm writing on behalf of my sister who is 44 and has cerebral palsy.

I have been reading many of the posts in the cerebral palsy forum and the discussions are so similar to conversations that we have as a family with my sister, about how the condition is so isolating, and it's difficult to get in touch with other adults struggling daily with the same condition. Having the love and support of immediate family is a wonderful thing, but there is nothing quite like establishing contact with other people experiencing the same physical condition and all of its complications and the emotional impact that it has on daily life.

Disappointingly it seems that nobody has posted on this forum for quite some time, but if there is anybody out there who would like to chat with a warm, lovely and caring person (my sister), who copes admirably with this condition on a daily basis despite all the difficulties that it imposes, I know she would love to hear from you, as I so wanted to recommend this forum to her. If there's anyone out there who wants to share their experiences of this condition with a really understanding and like minded person please get in touch and I will get her to join and reply to you.

Hope to hear from anyone out there with cerebral palsy so that none of you need to feel isolated and that you are coping alone. I think there are many people out there with this condition who are not aware of forums like these. Hopefully if there are some responses, this forum can get going again. Looking forward to hearing from you!

13 Replies
rcwallace21 profile image
rcwallace21Administrator

Hi there, I'm admin and have cp. I'm 28 years old. I haven't posted for a while as I have been unwell. I am going to post tomorrow and keep the forum up to date life has just got in the way. Would love to have your sister as a member.

Many thanks,

Rachael xx

music55 profile image
music55 in reply to rcwallace21

Hi Rachael,

Thank you very much for your reply. Sorry to hear that you've been unwell and I hope you are feeling better. Time flies doesn't it. It looks as though it has been a few months since anyone posted anything on this forum. Tricky thing is I guess a lot of people with cerebral palsy wouldn't even know that it exists which is a shame. Let's hope it can get up and running again!

music55 :) xx

Hi, I have Cerebral Palsy and Graves’ disease.

music55 profile image
music55 in reply to CPandme

Hi, I really wasn't expecting anyone to say that. I am sorry, as if the CP isn't enough to deal with on its own.

How has the CP affected you? Are you currently having any treatment such as physiotherapy/medications?

When my sister was a child, mum was shown how to do physiotherapy with her in order to stretch the leg muscles while she was growing up, but beyond that there has been surprisingly little support or interest from the NHS. It seems that CP sufferers are often just left to cope with life, which can be a real struggle.

This is why I think it means so much to be able to have contact with other people with the same condition, especially if you are not very mobile, are unable to drive a car and possibly cannot work, it can be incredibly isolating. Would love to hear more about you :)

How about the Graves, how long have you had it, and have you made any decisions about your treatment yet?

Warmest wishes,

music55 x

CPandme profile image
CPandme in reply to music55

Hi, My CP has affected me in lots of ways. I can’t walk, drive or see very well at night. But I live with support from personal assistants and independently, have a degree and I work part time. I love my job because I am just part of the team. I realise I am lucky to be in paid work but it can be done. I enjoy my life and have a good support network, especially family.

As for Graves I have had orbital decompression surgery and a thyroidectomy. It’s not easy but I don’t find it helpful to dwell on the illness too much. It is what it is. There is no cure so I just have to make the best of it.

purple777 profile image
purple777 in reply to CPandme

Hi I am music55's sister. I am really new to this so still finding my way around the site. It will be good if I find some new people to talk to.Your positive approach to life is helping you succeed.

Best wishes x

CPandme profile image
CPandme in reply to purple777

Hi, nice to hear from you. I’m not always positive believe me. It would be good to hear more about you. Your sister sounds really supportive which is great.

purple777 profile image
purple777 in reply to CPandme

Hi hope you having a good day. I work part time at the moment but I am currently enjoying the summer break. No real plans. I am having work done on my flat re-decoration and new ceiling (flood in flat upstairs) can't wait for it to be more normal again hopefully soon

Hello,

I’ve just rediscovered this site, so thought I’d say hello. I have mild CP and since surgery on my ankle when I was 10 I’ve been able to work and get around pretty normally. Now I’m 48 I’ve started to have more problems with pain in my legs, and I find it quite scary not knowing how things are going to progress. Hoping to visit this forum a bit more, as I can also feel isolated. The lack of support for adults with CP is tough, but hope we can help each other with that!

Nice to hear from you Purple777, and to Music55, you sound like a lovely supportive sibling (I really need to tell my brother he needs to step it up 😀)

purple777 profile image
purple777 in reply to Joybolt

Thank you for your kind words of encouragement. The site looks to have been quite quiet lately which is a bit of a shame. Getting a little older and finding yourself changing is when it is hard to know what to do for the best. Yes I am lucky to have a kind and supportive family

Take care x

music55 profile image
music55 in reply to Joybolt

Hi Joybolt. I wondered if you if you had seen a physio in adulthood, then I noticed in your other reply that you saw one last year. Did that physio specialise in treating people with CP?

Having seen a physio in action recently who does specialise in CP I wondered if it might be something for you to consider, as they may be better placed to identify the reasons for your pains, to help you long term and help put your mind at rest. Just a thought :)

Hi,

So the physio last year didn’t specialise in CP, but told me I needed to get a referral via my GP to the neurology dept. Then I could see the right kind of physio. I’ve put it off for a while, for a number of reasons. But had a bit of a down turn the last couple of months so finally seeing my GP on Thursday to get things moving.

I have low expectations of healthcare at the moment as I’ve been going through the system with my dad who has dementia. But I know I need to fight for this for my own piece of mind, as you said.

Have you both had a good experience of the physio, and have they been able to help much?

It's very early days with regard to the CP physio, so too soon to say how much it will help, but I think it looks promising. Initially she made a very thorough physical assessment and outlined what she thought could be improved over subsequent sessions. I will leave it to my sister to comment on any of the details if she feels she wants to at some point, but overall I thought it sounded very positive.

Like you our Dad also has dementia which often makes it hard for us to feel positive about day to day things.

It sounds as though you are going to see the right kind of person, I just hope you don't have to wait too long. There never does seems to be a right time for these things does there.