Making life easier

Since being diagnosed with MND I have had to learn to adapt continuously to the changes it brings. Sometimes this just means learning to do things in a slightly different way, for example remembering to place one hand underneath a bottle or cereal packet when picking it up so that it doesn’t slide through my fingers. But quite often I will need the assistance of a piece of equipment and during the course of this year I have begun to amass a little collection of gadgets that are making life easier and which help maintain a degree of independence. These gadgets have slowly woven themselves into the fabric of my life to the extent that I am now so dependent on them that I could not function without them. Another point I would wish to make is that the progressive nature of the disease often means that some gadgets may only have a limited life before the disability moves on to a point where it is no longer usable. Here then are some of the most useful pieces of equipment I currently use.

Shower board – This is one that Marion, my Adult Services Occupational Therapist obtained for me when I started to experience problems getting out of a bath back in July. My arms are so weak now that they just cannot support my body weight any longer. Although it’s true to say that this is not designed to be a replacement for taking a bath (I have a separate less used piece of equipment for that), but instead designed to make showering easier when legs start to weaken, it is nonetheless an invaluable piece of equipment as I take far more showers then baths. The big advantage this offers me is the ability to make washing my hair much easier as I can sit down on the board and rest my elbows on my knees whilst bringing my head down to meet my hands. Before I had the board I would have to crouch down in the bath and perform a similar action but with water pouring down and my eyes closed there was the increasing danger of rocking backwards or forwards into the bath and not being able to get up. The shower board then increases my safety and reduces the energy I need to expend.

Shower board

Long reach bath sponge – I bought this back at the beginning of May in my local Keep Able disability and mobility shop. By this time it was becoming very difficult to clean my own back. The weakness of my shoulders and the slowly spreading paralysis meant that I could no longer perform the necessary arm movements to hold a sponge and move it around behind my back. Now I use it in conjunction with the shower board by resting my elbows on my knees whilst sitting down and bending forward whilst sliding the sponge along my back which is now in a horizontal position. It’s quite a time consuming operation and it’s a fair bet that I’ll loose my grip on the handle and drop it several times but at least it does the job for now anyway.

Long reach bath sponge

Raised platform – An invaluable aid for working in the kitchen as it elevates me 6 inches higher and makes it far easier to use the kitchen work surfaces now that my arms no longer fold at the elbows (unless I rest them on a surface and apply pressure). I’ve now been using it since early March and have Roger, the craft technician working for Adult Services to thank for this one. Portable in nature, I can kick it around the kitchen as needed. Oh yes, and it does a wonderful job of scratching the kitchen floor tiles, hehe…

Raised platform

Culinare OneTouch can opener – It does exactly what it says and amazingly it works too! All you need to do is place it on top of the can and press the button and stand back and watch as the hands free electric can opener makes neat work of slicing the top off the can. It even shuts down automatically afterwards. A very useful gadget to have for all those cans that still don’t have a pull ring, especially now that my hands are so weak and incapable of using a mechanical can opener or being able to hold things very steady. Good value too at only £15 and another gadget from the Keep Able shop.

Culinare OneTouch can opener

Flexible drinking straw – Yup the humble drinking straw! These are the sort of gadgets I like best: cheap, simple and yet highly efficient. I lost the ability to raise a drink to my lips not too long ago as my shoulder muscles had weakened too much. Since then I have become totally dependent on straws. But they save me so much energy and have removed all the stress (and risk of spillage) of trying to lift a mug. I’ve also now started to carry a couple with me at all times in case I should find myself someplace where none are available.

Flexible drinking straw

Key turner – A £1 gadget from the Keep Able shop that makes the difference between being able to get in the house and not! It actually pivots around the fastening screw and can therefore be used in a crank handle-like fashion. My hands and fingers are now so weak that I just cannot find the strength to turn a key without the extra leverage that such a device offers.

Key turner

Extended inside door handle – Actually there are two new pieces of equipment here that collectively make getting out of the house or opening the door for deliveries so much easier. The first is a new Yale lock assembly mounted much lower down the door as I could no longer reach the original Union lock. Previously I was having the throw my arm up towards the lock and just hope that I could wrap my fingers around the tiny handle. Quite often though my fingers would slip off as soon as I turned the handle. The new lock alleviates much of this problem but still only offered a small handle that didn’t allow me to get much grip and trying to pull open a heavy door with just one weakened finger was a bit of a struggle. The extension handle kindly fitted by a member of REMAP, an organisation of retired engineers, gives me additional leverage and space to wrap my whole hand around. It’s now very easy to open the door.

Extended inside door handle

Outside door D handle – a companion to the above and also fitted by a REMAP member. As can be seen in the photo the new Yale lock offers no grip to pull the door shut and my hands are too weak to close the door by pushing my hand through the letterbox and pulling it closed. This new handle is just the right height and makes life much easier a I don’t have to struggle to raise my arms up to try and hold onto the grip on the old lock.

Outside door D handle

Velcro fastenings – I owe a debt of thanks to my friend Linda from the Motor Neurone Disease Association for this one. She has kindly modified several of my shirts so that I no longer have to fumble with buttons with half paralysed fingers. But cleverly she has modified the shirts in such a way that to an outsider they look completely normal because the buttons have been sewn on the outside. Well done, Linda, and thank you so much. I’d already experienced several episodes of walking around the house half undressed because my hands were so weak and unresponsive. This adaptation gives me the freedom to choose shirts that suite my own taste rather then have to choose from the extremely limited styles available from specialist suppliers of disabled clothing.

Velcro fastenings

So there we are just a few things that although inexpensive and for the most part very simple in nature, have been proven to have a tremendous impact on my quality of life and my efforts to maintain as much independence as possible. Oh and a quick word on the photography for this blog article. When I lost the ability to raise a drink to my lips recently I also lost the ability to hold a camera to my eye so taking hand held pictures now is almost a no-go. I did try attaching the camera to a tripod bush but found that I neither had the strength nor the dexterity in my fingers so consequently I had to resort to some rather desperate measures to get these few pictures including the use of a chair so that I could raise my left leg up whilst trying to balance the camera on my knee and peer through the viewfinder at the same time. In other cases there was no option other then to ‘shoot blind from the hip’ which of course resulted in numerous duff shots. In fact I took over 70 photos just to get a few useable ones because so many were poorly composed or un-sharp as I found it difficult holding (what seemed to me) a heavy camera. What would have made life easier is an articulating LCD screen on the rear of the camera. There are models that offer this feature but unfortunately (to my knowledge) none from Canon. Anyway, although a frustrating exercise I still have the satisfaction of getting there in the end and being able to illustrate my own blog article.

Mark

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