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Jock
10th March 2015, 13:17
My left arm is now weakening. The right arm and both legs are already of no practical use. My right arm took about three months to go so that is the unscientific time frame I'm giving my left arm.

I can still eat and drink, but the speech is iffy.

I'm thinking of the full implication of life with no limbs. I'd need to be fed and offered drink each and every time. I'd need an IT solution and would prefer not to pee myself each time (I presently get hoisted to evacuate my bowels). Any thoughts on these matters and others I may not have mentioned?

Cheers Jock

Jock
10th March 2015, 13:34
To add...

I have on loan a motorised wheelchair which I soon will not be able to steer. I feel I should return it so someone can get use from it. I have a recliner on loan too, but I won't be to operate the remote that operates it or any of the TV/DVD remotes. I could be hoisted into the recliner, but little else. There is my hospital bed I can lie in, but 24/7...I can get hoisted for showers and cleaning.

Jan
10th March 2015, 13:43
Oh dear Jock! can enviromental services help now with maybe a head mouse or the like so that controls can be operated by that?

Steve
10th March 2015, 13:50
Hi Jock

I use a convene catheter which is a sticky condom that connects to a bag. Less invasive than a more permanent solution.

Chairs can have controls used via a neck switch or your eyes.

AAC controls can be used for the tv, chair etc.

There are many IT solutions out there. When the arm goes there are loads of gadgets out there to help. You don't have to spend the rest of your days in your pit, trust me.

Jock
10th March 2015, 13:53
Oh big cheers Jan. That's one potential hurdle potentially covered. If anyone else has not heard of a head mouse then here you go http://www.orin.com/access/headmouse/. I'd read up properly on it and then pop my SaLT an email.

mik
10th March 2015, 13:55
hi jock,
i am currently down to my big toe as the last usable part of my body, i have a button for my possum control which i can just about use. with regards to being fed and watered theres no point in sugar coating it at first it uncomfortable, awkward and horrible but like anything with MND you get use to it and does get easier, although i am glad i am peg now its alot easier. with your IT solution if you have a laptop you can get an eyegaze add on for a few hundred but i am sure you could get help with that.
mik

Jock
10th March 2015, 13:59
Cheers Steve - convene catheter here we come. That's a big issue to solve.

Further reading on AAC controls etc to follow - thank goodness for Google :)

Steve
10th March 2015, 14:02
If you are in contact with a SALT they might be able to help with a lot of the IT stuff.

Jock
10th March 2015, 14:07
My SALT saw me about a month ago and pulled out the IPad with Predictable. I'd convert over from my Windows Laptop soon. She merely touched on the other issues we are discussing here, so I'd get on to having her out here again pronto.

Jock
10th March 2015, 14:16
Mik - thank you for your advice on getting used to food and drink. I've found myself getting used to things like having my bum wiped, so skies the limits I suppose. :)

I'd be watching CH5 tomorrow to get any tips going.

Steve
10th March 2015, 14:25
Have you enquired about a bio bidet? They're brill.

Jock
10th March 2015, 14:39
No I haven't. I get hoisted on/off a four wheel mobile commode to evacuate my bowels which the wife usually cleans.

Steve
10th March 2015, 14:59
the jets on my bio bidet go through the commode chair. They are a hassle to install but great when installed.

Trevorhb
10th March 2015, 15:19
It is the pits is it not. When I look at my hands, arms and legs I see shrunken limbs which look like a man of 90. At least we are all in this together.

Steve
10th March 2015, 15:26
I agree Trevor, I used to be so active, it is hard to watch muscles deteriorate.

Jock
10th March 2015, 15:27
Steve - Got a make and model number I can run through 'You Tube'?

Trevor - It's interesting you mention 90. I told my Carers this morning that ASL is like feeling 50 one day and 90 six months later. Life is like a DVD on fast forward.

Still best to focus on what you can do and sod what you can no longer do. :)

Steve
10th March 2015, 15:34
It looks like this, mine was supplied by the MNDA.

http://www.healthandcare.co.uk/bidets/bio-bidet-supreme-bb-1000.html

Jock
10th March 2015, 15:51
This is my mobile commode http://www.wheelchaircompany.co.uk/product/mobile-wheeled-commode-chair_commode-on-wheels.html I am unable to use the regular loo as we have no hoist rail in that room - just my bedroom and our living room.,

DaiTheDragon
10th March 2015, 16:59
My SALT arranged for me to have assistive technology I think ist called. I have iPad mini which has been programmed for each room. It can switch light, adjust hospital bed, switch tv on and change channels and dvd player it also has pager on it and an intercome for the front door then I can open the front door with it. There are many more things it can do depending on you circumstances.
I will find out the company that did mine. All paid for by NHS
David

willsandco
10th March 2015, 17:16
I am so sorry, Jock. I hate the thought of losing my arms and hands. I have just been out today for four pieces of white card so I can record my late husbands family tree for my daughter and three of her cousins. It is all in my head and when I go, it is gone forever.
Revamping will and power of attorney tomorrow while I can still type out what I want. But it is all forward planning, isn't it? Love Joycie xx

Jock
10th March 2015, 17:24
.....But it is all forward planning, isn't it? Love Joycie xx

Exactly.:)

Dabchick
11th March 2015, 12:37
It looks like this, mine was supplied by the MNDA.

http://www.healthandcare.co.uk/bidets/bio-bidet-supreme-bb-1000.html

Oh many many thanks for this Steve. The OT nurse mentioned one of these to Dave yesterday (he doesn't need it yet and is convinced he never will :-( ) but he was interested in how they worked and were fitted as he is a builder. So this shortcut has saved me lots of Googling!

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