Viewing 13 posts - 1 through 13 (of 13 total)
  • #73959


    Posts: 4
    Joined: 26/09/2011
    Re: my son is deteriorating

    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! :oops:

    Welcome aboard too :)

    Posts: 1,015
    Joined: 05/03/2015
    Re: my son is deteriorating

    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. The way I read and understood it was….you shuffle/crawl/get over to where you leave this cushion and sit ontop of it and use the hand pump/remote to inflate it till it’s high enough for you to stand up from. I will try to locate the thread where this was mentioned tried and tested. I so wish I had one of those when I was ambulant as it would of provided good “mental security” if you will knowing there is a way to get up off the floor by yourself if you’re alone.

    Posts: 69
    Joined: 18/03/2011
    Re: my son is deteriorating

    @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.

    Posts: 564
    Joined: 24/01/2011
    Re: my son is deteriorating

    Hi there. It sounds like this situation is getting quite serious if he is falling and can’t get up. While his independent streak is admirable in a lot of ways, he’s going to have to recognize that with the hand life has dealt him he may to have to lean on others for help. In the mean time, if he continues to refuse the help, just make sure his environment is as safe as you can. You could get him one of those medical alarms if he will accept. Also, just check up on him as often as you can. Continue to let him know that you want to help.

    Posts: 5
    Joined: 29/09/2011
    Re: my son is deteriorating

    @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.

    I'm always the animal, my body's the cage

    I blog about nothingness

    Posts: 4,751
    Joined: 05/03/2015
    Re: my son is deteriorating

    can I ask if he’s falling due to walking or when he’s transferring?

    It might be an option to put safeguards in place like grab rails or something to grab onto to stop the falling, perhaps even putting them in place in a hallway?

    I’m stubborn and refused the help of my parents a lot even though I know they meant and still mean well, for me it’s a feeling of worthlessness and helplessness and general frustration because something that used to be so easy is not any more. I’d liken it to the five stages of grieving – he’ll get to acceptance eventually but in the meantime keep doing what you’re doing and revisit the idea of a power chair again in a few months, it will give him more independence and he might change his mind.

    I dont know if that helps or not.

    What about second breakfast?


    Posts: 266
    Joined: 01/10/2010
    Re: my son is deteriorating

    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


    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Posts: 1,002
    Joined: 20/09/2010
    Re: my son is deteriorating

    I agree with cat, an electric wheelchair will provide more independance than you son thinks. My son is 20 and has duchanne and he can whizz around in his electric chair which will go up and down stand him up and even lie him down so we can do his exercises. Could you not send him some brochures? His life could be so much more enriched with the right equipment to help him. He needs to come to terms with his limited abilites and take this help to help give him independance and safe guard his own life and health. By doing what he is doing he is putting himself at risk and also loosing any independance he has had! :roll: :roll: :roll:

    Posts: 12
    Joined: 23/02/2012
    Re: my son is deteriorating

    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.

    Posts: 0
    Joined: 01/01/1970
    Re: my son is deteriorating

    hi. i have edmd and if your son ever needs someone to talk to , thats in the same boat. im always around. just leave me a private message and i’ll get back in touch.


    Posts: 526
    Joined: 04/10/2011
    Re: my son is deteriorating

    @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?

    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.

    Posts: 383
    Joined: 07/02/2012
    Re: thanks

    very helpful thank you x

    Posts: 4
    Joined: 26/09/2011
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