Hi, my name is Mollie! I’m 26, I have quadriplegic Cerebral Palsy I have 24 hour care

Molliepw96

I’m 26, I have quadriplegic Cerebral Palsy  I have 24 hour care from carers . I feel isolated and I’m fed by a tube. I don’t know anyone who else is fed by a tube .

Ross_Alumni

Hello @Molliepw96

Welcome to the community, it's lovely to see you join us and I hope you enjoy taking part here.

I appreciate you introducing yourself and telling us a bit about your situation, I'm sorry to hear that you feel isolated. Have you discussed these feelings with your care team to see if there's anything they can do to support you?

I'm sure that joining an online community such as this one will help you feel better, and we do have a category dedicated to CP which you might like to have a browse of.

There is also a virtual CP cafe which you would be welcome to join, you can view details about that here and I'm sure that @Richard_Scope would be happy to provide any further details if needed.

Molliepw96

Thank you ☺️

Richard_Scope

Hi @Molliepw96
Great to meet you! I have quad CP too. There are quite a lot of fellow CPers here in the community.

Danielle_2022

Hiya @Molliepw96,
It's been a while since your last post, so I just wanted to check in and see how you're finding the community? I hope that the links above have gone some way towards helping you feel less isolated, but do just shout if you need any further support

nightjars

Hi Mollie, Hope you are doing ok? Its a while since you came on here. Maybe you are relying on someone else to use this site. If you do come back on... my sister Tina had CP and used a feeding tube , though not till the last few years of her life. I should mention, She did not die because of the feeding tube, rather it kept her going, because she could no longer eat properly. Tina did hate her tube because she had not always had it . However it did not stop her from enjoying life. You say that you have 24 hour care. is this in your own home? Tina lived in a care home and although they drove each other mad sometimes, she always had other residents around her. There was easier access to specialist help and activities. Tina went into a care home at just 8 years old. It was very tough on her and my family as we were so close but my parents insisted it would make life easier for her later on. She lived in Craig Y-Parc school in Wales and we were in Watford!, a long drive up and down to her. Eventually Tina managed to get near home by the age of 21 and by then she was was very independent and mixed with anyone. I am just saying all this. in case its possible that you yourself could move into a home. Maybe like us you have a close family who want to keep you nearby but essentially you need to have a life! and maybe this could be a better option for you. If you are in a care home Mollie it could be that your home is a bit like Tinas and woefully bad at organising activities. It seems as soon as you turn into an adult, all that education etc comes to a stop. Its something I feel very strongly about, that older people with severe disabilities get forgotten and its just all about getting you up , personal care, tv and then all in reverse back to bed. I hope things change for you Mollie, you are still young and hope that something will change for you in the near future. Keep coming on here. I would love to keep in contact with you and see if I myself can help at all. Best Wishes jackie.

surfygoose

Hi, I do not have CP but my girlfriend has quadriplegic Cerebral Palsy. I do however empathise with you saying you have 24 hour care because I do as well because of my autism I have one to one support while I’m awake (17 hours per day) and waking night staff watching me by video monitor through the night. I hope you are doing ok.