thanks

Its very hard to get someone to accept help if they don’t want it and as a family member its hard to sit back and do nothing. You say he has friends could they be talk to him, sometimes you can be more inclined to listen to friends than a parent, failing that is there a family GP who could help but the snag here is of course getting your son to accept help. It maybe that you will have to wait till he does accept that he needs help.

I’m sure others on here will offer advise that is probably a bit better than mine!

Welcome aboard too

@ambitiousturtle24 wrote:

When reading over the OP message a previous thread came to mind related to falling. Somebody mentioned an inflatable rising cushion you can have in a set location in the house for people who struggle to get up after a fall. …

I think you probably mean the Mangar Elk. It’s a good piece of equipment, but I’m afraid that I’m not sure that it would be possible to use it safely without assistance.

@bikerblob wrote:

who could help him?

Are you/he in touch with a Regional Care Advisor? You can find the contact details for the one nearest your son HERE

I would advise calling them and chatting, they may be able to offer you advice, as well as maybe an ad hoc visit to your son, where he need not know you called them.

You say he has Careline, would he use them if he needed to? Has he used them after falling and is home alone?

I can appreciate and relate to your son’s situation, the striving for independence and not wanting to ask for help, but he will come to realise he needs the help, sadly for you it is a waiting [and worrying] game and be as prepared as you can to give him options of how care can be provided for him and controlled by him.

Try introducing idea of Talk MD to your son. even if he just lurks for a while.

In the last year since joing talk MD I have came to terms with alot of the things that bugged me about having MD and was able to make the transition to using disability aids. Talk MDs not all doom and gloom and disabled stuff we have a bit of a giggle and it helps to talk to people who understand about stuff, to be able to share the short version of a problem without having to explain every detail coz they just know coz they live the life too.

I hated the idea of a wheelchair powerd or not but eventually settled on a powerscooter. A powerscooter may appeal more to him as they can go quit fast and he may feel a little less restricted in the scooter. Talk to him about hiring one for the day at a shopmobility at a shopping centre. it may make him feel dfferently if he can zip around fast in his own steam.. It helped me.

take care

cat

Your child is in the process of denial stage of the diseases that he is facing right now. It also need support from the family and friends, being their will help him to be strong and accept everything.

@bikerblob wrote:

uses a manual wheelchair with great difficulty ( wouldnt have a powered chair when asked last year)is losing lots of weight ( looks less than 6 stone)
what should i do? who could help him?
thanks

I think the effort of using his manual wheelchair is possibly contributing to his weight loss. We know from our own experience of MD that struggling to use weak muscles takes lots more energy than “normal” so a powered scooter or wheelchair wouldn’t just give him more independence and be safer, it would save the muscles he has from overworking. Being underweight is not good for anyone as it can cause other problems.

I certainly can relate to and appreciate your son’s determination to be independent but when all’s said and done, he will have more independence if he goes electric.

I agree with one of the previous postings about logging into this forum – if your son can see that it’s not the end of the world to rely on others, he will be more accepting of his situation and save himself lots of mental anguish and stress.
Sybylla