Hi, my name is Alister1!

Alister1

Hi, I am the mum of Alister who has cerebral palsy (spastic quadriplegia), epilepsy, is registered blind and is peg feed. He is now 27 years of age, 28 next March!
Alister is unable to do anything for himself and lives in the Nursing Home at The Epilepsy Society in Chalfont St Peter. Alister’s dad and I plus his younger sister (19) and brother (26) live only 10 minutes from him.
Alister’s main issue is his chest and as a result he suffers from recurrent chest infections. He has just come home from a hospital stay of almost a week with the addition of an NIV machine to use at night. He does only occasion require supplementary oxygen.
Would be nice to speak to anyone in a similar situation to us.

Aly x

Rosie_Scope

Hello @Alister1, welcome to the community 😊 I'm afraid I'm another who isn't in the same position, but I wanted to say hello and welcome anyway!

I'll tag our Cerebral Palsy lead @Richard_Scope who might be able to offer some ideas or contacts.

Hope Alister is recovering okay from his latest infection!

Richard_Scope

Hi Aly, @Alister1

Thanks for your post. I hope Alister is recovering and starting to feel a little better. I live with CP myself and along with my colleague, @Lucy_Scope we host the CP Network monthly online Zoom meetings. This group is for adults living with CP and parents of adults living with CP. You would be most welcome to join us. All you have to do is register.

This month we are having a 3 part special focusing on Wellbeing. You have to register for this as well.

Alister1

Hi, thank you so much and yes I would love to join the group.