Checklist for losing the use of your arms

[nunhead_man]

Good afternoon all

As you will know I have arm onset MND, which means I am slowly losing use of my hands and arms - perhaps 50% left on my left, and 90% left in my right just now - still have a bit of a pinch grip there.

For those of us that a slow onset we have the time to think about what next, which came up in the conversation over my usual early morning hand massage session with my wife this morning as she tries to keep my left hand from blowing up as it is not particularly active and swells up.

So, I went hunting for a checklist to see what things we might have forgotten as we come to plan how we proceed with the development of my disease.

I had a poke around on the inter-web and could not find anything particular that was sensible by way of such a list.

The MND Association publications are not much help in this regard and the same goes for the guide to disabled accommodation provided by my OT which can be found here:

https://www.housinglin.org.uk/_assets/Resources/Housing/OtherOrganisation/SELHP-2013.pdf

The kind of thing I mean is that what partly bought up the conversation I mentioned was that I went to get some tickets from the local station automatic ticket machine to attend the September meeting of the MND Association trustees - I suddenly realised that I had not got the strength in my right hand to get the credit card out of the slot I had put it in to authorise the receipt.

To be best use to me this checklist needs to preferably be ordered to list the things that I gradually lose as they gradually lose my arms - so things that need use of 2 fully functioning arm start with running down to the things that I will not be able to do once I lose complete function in both arms

So, there is one thing for my checklist - take a pair of pliers with me to get my credit cards out when drawing, cash et cetera.

Obviously, there are some other things about using the toilet, getting dressed, closing window catches, holding a book to read, opening doors .....

Does anybody here have such a list or anything to add to this list?

Warmly

[Terry]

Hi Andy,

I had this made over five years ago for locking and unlocking those disabled loo's that have a little bit on to turn.

1566488780928964951472.jpg

There are robotic feeders and robotic arms but both are expensive, especially the arms.

I also use a small long armed paint roller for reaching and pulling things and a extending magnet for picking things up and altering car switches etc.

You can get remote controls for windows curtains which can be operated from a door I pad or using eye gaze.

Love Terry

[Gillette]

Hi Andy,

I can no longer put my card into an ATM, neither can I enter my PIN.

I cannot reach to post a letter in a Royal Mail post box.

Writing is a challenge because my arm won’t move along as I write.

I need to use an earpiece with my mobile as I cannot hold the handset to my ear.

Were these the sorts of things you were after, or were you looking for the solutions people have come up with.

[Sheila]

Hi Andy, Dina.
I am the same with the atm machine. Can't take the card out or money. Writing is very bad. No grip, my mnd nurse said use a fatter pen. All these things I use to take for granted.
Love Sheila

[JAY TEE]

Andy I was formally diagnosed with MND 5yrs ago and luckily mine all down my left side but can still move left arm and leg a bit. I am in my wheelchair all day. The controls on right so can get out and about and looking forward to start of Rugby season. I have not used my card for years but after reading your story going to have to see if still works. Best wishes John

[Sueb]

Steve started with his arms and hands going first. He couldn’t dress or undress himself. I put Velcro on his trousers, he wore Velcro shoes. His balance went because his shoulders dropped and would fall because he couldn’t put his arms out.

Steve got stuck in the toilets in Mac Donald’s because he didn’t have the strength to open the door and had wait for someone to come in.

He couldn’t pay at the car park ticket machine then couldn’t put the ticket in the slot at the barrier to get out the car park when he went to have a blood test at the hospital. A passerby helped him. Stopped driving not long after that.

Has to use Siri on his phone to make phone calls. When I went out he had his phone on automatic answer.

That’s just a few of the things he couldn’t do.

Sue

[Ellie]

Hi Andy,

A comprehensive list would make for sombre reading, I’m afraid, and wouldn’t cover half the things one could imagine will be impacted by having useless hands & arms

From using your arms to get yourself out of bed first thing in the morning, to pulling the bed covers up on you last thing at night, you will use your hands & arms for practically every single thing you’ll do throughout the day - our upper limbs are far more useful than our lower limbs.

Teeth come in handy, as do grips of various forms. You’ll find ingenious ways to adapt and conquer.

And not all muscle groups will be affected to the same degree necessarily - you’re already finding differences between flexor and extensor muscles. Even though my arms are practically useless, I’ve still got differences in clinical tests of extensors and flexor muscles in the same area.

I have to comment on those Housing Guidelines: honestly, who on earth will have the space & finances to adapt or build a house to those standards?? And most of them are just ridiculous for everyday living - who needs 900mm width internal doors for starters? My wheelchair isn’t narrow but still comes in at 620mm and easily fits through standard doors (without even slowing down ) They’re aspirational for sure…

Love Ellie.

[Jer788]

Hi folks, I have to say I so admire you all. Your strength and acceptance of this bloody thing is amazing. Where would we be without hope and imagination. Jerry x

[slp]

Hi Andy

I have been trying to remember the things that helped me as various parts of the body ceased to function as they should
It is is quite hard to recall but as my hands and arms stopped working well I used a headset for my phone and the laptop was replaced with an I pad which I used for a long time at the table with someone positioning me and just using one finger
Now I use an eye gaze controlled tablet which is amazing and very easy to use
Eating was tricky but a lot of adapted cutlery and gadgets are very useful and worth a try
I used a neater eater for a while and now I am fed by whoever is here
Things like shoe horns and things to put socks on are helpful and I have a wash and dry toilet which is great
Everything I have had has been provided by the NHS and via my OT
I am not sure that this is what you really wanted but I prefer to concentrate on what I can do not what I can no longer do so I hope it is useful x
There are some wonderful people on this forum who are so good at sharing tips and experience and it has helped me so I hope it helps you too
much love
Sarah x

[Catsparkle]

Scoop dishes are awesome for one
handed eating, and i use cheap camping cutlery as its light and easy to hold(my elbows
Work but my shoulders don't)
I found i could cook with a soupmaker when pans were too heavy, the handle is easy to grip and the body of it incredibly light

[nunhead_man]

Hi Sarah, and thank you all

I have been trying to remember the things that helped me as various parts of the body ceased to function as they should .......I am not sure that this is what you really wanted but I prefer to concentrate on what I can do not what I can no longer do so I hope it is useful

This is indeed the kind of thing I wanted and I realise that as Ellie says it makes a sombre list - but then I sometimes do feel really sombre.

I hear what you say Ellie about those space requirements, but probably misquoting somebody on 1 of the Facebook groups – MND Warriors – occupational therapists are quoting the Rolls-Royce standard to which we should aspire although I agree it seems that developing wheelchair standards, especially those that turn in their own space, and using a smaller wheelchair inside and outside. make make for less of a space requirement.

Here are some of the links from that group, including some I posted;

https://www.sunrisemedical.co.uk/powered-wheelchairs/quickie/power-wheelchairs/q700-up-m?fbclid=IwAR17HUOqaWf5VS8w9By2HfrxyFMq-LycEWgS8QS_rIdVaLs34F0ROPT9OJU

https://blogs.3ds.com/perspectives/improving-accessibility-and-mobility-with-3dexperience/?utm_campaign=201907_GLOBAL_socialalwayson_OP51316_Labelium&utm_content=201907&utm_medium=paidsocial&utm_source=twitter&fbclid=IwAR31aEyU0MT0DW_MD-y7K7a7wMKzY5OWcPPpBVoH1sr2bg_QesdzYKmoUc4

https://www.sunrisemedical.co.uk/powered-wheelchairs/quickie/power-wheelchairs/quickie-salsa-m2-mini

And somebody mentioned keys and that sort of thing - I was thinking today as I lose proper use of my other hand about how I would be able to get myself out of the house by turning keys and wondered if some sort of adapter was available to allow me to use these hands that have become paddles.

Obviously, as we are now thinking about moving we do not really want to rig the place up with voice-activated door openers or whatever if are we going to be moving in the spring of 2020.

Warmly

[Catsparkle]

You can look up key turners, they work well. I found clothes/pants etc that were a bit big for me gave me a bit longer before carers,as did thumb splints, helps floppy thumbs!
I found playing zelda helped keep my left thumb going a bit longer.
I think we lose in different ways, eg my shoulders are gone but i still have a little movement in my left fingers and thumb where it started 2 years ago, so your ot is probably the best source of ideas for kit
On a more sombre note, while i was panicking about what i should draw or make while my hands failed , i assumed my voice would be ok to rerecord my songs. It wasn't.
So if you dream of doing something that depends on your body , consider prioritisingCB them by importance rather than body area xx
Lots of love, Lisa

[Charlescic]

Checklist for losing the use of your arms

Alrightty It seems when Rome was burning, there was a citizen that posted likes in Youtube for Neros fiddle music. How dare they ignore that music I say?