MND aids?

HumbleRaisin

My dads getting closer to the paralysed stage of MND, his right arm (the last remaining part he can move) is weakening rapidly.

Has anyone got any advice/experience with things we can get to support him drinking?

I've just ordered him the hydrate system on amazon to try but obviously thats mostly just good for his juices/waters. I'm guessing we're going to need a straw and someone to hold up his smaller nutrition drinks for him. We've kinda been left alone to figure this one out as none of his team have seemed worried that this was the eventuality.

Feeding wise I'm guessing thats going to be one of us feeding him until he gets given his feeding tube. As far as I'm aware he's now on the list for that procedure.

One other thing is his stairlift seat feels kinda wide to him, and he has a tendancy to lean to the sides/forward in it. Has anyone bought (or made) a strap to go over the stairlift seat/users chest just to hold them upright and to it a bit better? As I'm considering doing that because at the moment we have one person going up and down right next to him supporting him to the seat but he still manages to lean and feel not secure.

I'm trying my hardest to stay ahead of the game with this decline as best as I can but does anyone have any experience with these issues or can think of future things I haven't thought about?

He already has his hoists in place, stairlift, commodes etc as well as a catheter.

Rosie_Scope

Hi @HumbleRaisin, sorry you haven't had any responses to this so far. How are you and your dad getting on? Did you manage to find any solutions at all?

HumbleRaisin

Rosie_Scope said:

Hi @HumbleRaisin, sorry you haven't had any responses to this so far. How are you and your dad getting on? Did you manage to find any solutions at all?

Hi, thanks for replying. we haven't as such. We're muddling by at least though

I've pressed the team about his arm chair at least and theyre looking to try a different repose for that.  Hoping this comes soon.

The stair lift I'm guessing we're just going to have to continue to hold him as he goes up and down but he'd never go up or down alone anyway as noones suggested anything else other than cramming towels etc by him from one person yet another told us not to do that so... we're stumped for that.

Drinking ive asked speech about the bottle and they looked at me like i was on another planet because they said it's ot but ot said its them so we're like whatever, when the time comes we'll try it and hope for the best at this point. The main issue with the hydrate is the having to bite and suck. The giraffe is similar but with a non return valve... if i could get one of them to put on the hydrate thats one issue solved buuuut, theyre hard to find seperatre.

Feeding is up in the air but diet are getting more involved cause it turns out dad at the moment has refused the tube. I respect his decision, he doesn't want to be in hospital as he doesnt feel they have the resources/staff/time to properly care for him and he'd rather be at home where he knows he is going to be cared for and helped if in pain or uncomfortable etc. However, theyre gonna try and talk to him about it again but will respect if he says no but are trying to help us give him adequate nutrition at least.

I've even managed to ask the nurses to expedite an air matress for his hospital bed. No news on when yet but at least its being looked into.

Other aids we're doing as okay as can be for, getting his bedroom hoist changed from one that's blocking access to a H system so that'll be much better. We have the repose booties for his feet and been given advice on when he feels pressure pain that isn't going to be fixed by a simple transfer from bed to sitting up in commode for a bit at least

MW123

@HumbleRaisin
I'm sincerely sorry to hear about your dad's MND progression. While I cannot offer any known solutions, have you considered using flexible straws that can be bent for comfortable drinking? Additionally, try contacting the manufacturer or a local mobility aid supplier who might be able to provide insights into  the stairlift seat modifications. Wishing you and your dad strength and comfort during these challenging times.