Hi, my name is Tommeu!

Tommeu

Hello

I am 58 years old

I have 2ndary progressive ms 

I am in a wheelchair. 

My flat is the property of lambeth council

I am cared for 3 times a day by a care agency that has been provided byg the council 

I have been here for 30 plus years. 

I have a profiling bed downstairs

I have a stair lift 

I have an adapted wetroom as a bathroom 

I am given a bedwash in my profiling bed each morning. I will also be supported upstairs on the stair lift to be washed in the wetroom. 

I had stem cell treatment about 7years ago. My mris since have reported no new lesions p
No emhancent of lesions. Hopefully this will have slowed progression right down. 

My son uses one of the 2 bedrooms upstairs. The other bedroom is now used as a replacement living room. It has a TV. 

I go outside to the front yard, up the high street. I. Use taxis if I need to. 

When I was working I was a music therapist for the NHS. I love music and it has helped me to :

Exercise regularly 

Improve my mental wellbeing 

Improve cognition 

Etc

I just want to stay in my flat. I have built up a strong network of support on this small estate over the last 30 years. I know the area well. If my son moves out soon, which I would encourage him to do, based on him building up his own life, I don't want to be moved to a flat in an unknown area that's going to be demolished soon!

Anybody in the same boat?

Sent from AOL on Android

Rachel_Scope

Hi @Tommeu 😊

Welcome to the community! That's wonderful news that there are no new lesions after the stem cell treatment. My Mum also has MS but hers is Relapsing Remitting and she doesn't require a wheelchair at the moment, so I can't directly relate to your issue but I'm sure some other members will be able to offer their insight.

Being a music therapist sounds really interesting. I also love music and find it extremely therapeutic.

I hope that you are able to stay in your flat once your son moves out as it seems you have everything in place there.

Tommeu

Hi Rachel

With Ms at relapsing remitting stage your mum would probably benefit more from it. When I did it you needed to have failed 2 attempts at treatment before qualifying for stem cell treatment. Don't know what it's like now. I was at that transitioning stage between rrms more progressive my neurologist said I was too late for it, but then mrid my spine, found some activity, so that put me back in for stem cell treatment

Could be worth looking into

Rachel_Scope

Thank you for that, I'll have a look into it 😊

Rachel_Scope

I've just moved your discussion to the Housing and Independent Living category where there'll be more people who can relate to your situation.

Tommeu

Thank you very much

Rachel_Scope

Hi @Tommeu. Sorry no one was able to help you. How are you? Are you able to stay in your flat?