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

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.