This is written from my own experience of living and caring for a loved one with MND/ALS.
One of the things I found the hardest to get my head round was how quickly things changed and how I needed to adapt to those changes. I did get better at it and was able to plan ahead ready for some of the obstacles we would face. But at the beginning I was totally unprepared for what was coming and it took me a little while to get up to speed as it were.
Craig lost the use of his hands and arms first. The loss of strength in his hands, meant he was unable to tie his shoe laces, pull his zip up on his trousers or do up buttons. I started to help with these things a long time before he was officially diagnosed. We knew at this point something was seriously wrong we just didn’t know what.
Getting dressed was becoming more difficult. To begin with Craig was able to cope by himself by making small adjustments, like pulling his shirts on over his head rather than buttoning them up. He liked to wear proper shirts not T shirts. After a while though he had little choice, as T shirts became much easier to use. He also opted for track suit bottoms as they were easier to get on and off and he could manage those himself.
When he couldn’t manage on his own, I would help him dress before I went to work. T shirts and tracksuit bottoms or shorts became the norm. We got some smart looking tracksuit bottoms so that he didn’t feel he was too scruffy. He liked to look nice when we went out and I liked him to feel comfortable. It was just a small thing but it mattered to him that he looked smart.
Dressing someone who has limited movement is hard and clothes that would have been their choice may not be practical any more. Dressing Craigs lower half was relatively straight forward, as he was happy in the smart tracksuit bottoms or shorts. When he was sitting down, either in his chair or in his wheelchair, he tended to have a blanket over his legs so what he was wearing on the lower half wasn’t as noticeable any way. At home he would wear T shirts or a jumper that were baggy and therefore easy to get on. Trying to get him into a proper shirt was doable but very difficult.
I asked my friend who’s a good sewer to adapt a couple of his shirts. I explained what I wanted. I asked her to put an opening down the back, which closed with Velcro, so he could still wear a proper shirt on special occasions. It worked brilliantly, it was easy to put on and didn’t involve me trying to manoeuvre his arms into a normal shirt, which was very difficult to do. The shirt just slipped on from the front and did up at the back. A good tip if anyone likes to wear proper shirts.
When showering Craig found it difficult to hold the towel and dry himself at the same time. To help him maintain his independence for as long as possible we bought a towelling dressing gown, so he could put that on and it would dry him. In theory it was a good idea, but in reality, it didn’t work very well for him, as he had reduced movement and strength in his arms so couldn’t get it on as it kept sticking to him. As a solution I made a towelling cape for him, I put a piece of elastic in a towel with a Velcro fastening. You can get towels with elastic already in them, like the beach changing towels you may have seen. This wouldn’t have worked for Craig as they go over the head and he didn’t have the movement or strength in his arms to put it over his head, but he could manage the cape I made, for a little while anyway.
When we went out in the winter months, we had a wheelchair raincoat which kept the wind out as well as the rain. We also had what I can only describe as a large foot warmer, a bit like a small sleeping bag that was lined, which went round his legs keeping his lower half lovely and warm. We did use a hot water bottle a couple of times too but generally if it was that cold we didn’t venture out unless we had to. He felt the cold a lot more now that he had lost a lot of body mass and wasn’t moving around.
In the summer we had an umbrella like the ones you can get for baby’s prams to keep the sun off. We also had a fan that clipped onto the wheelchairs frame. He had a cooling mat which he lent on to stop him sweating so much. I had been told that getting a proper sheepskin lining for the chair was the best solution because it kept you cool in summer and warm in the winter. We never got round to trying this out but I’ve heard it works well.
In regards to foot wear there a few options such as slips on and Velcro fastening. These have developed over the years and you can get much more stylish shoes that are easier to get on and off. You can also get shoe supports or splints to help with drop foot and help to support your walking. These can be adjusted as the disease progresses. Your health professionals should help you with this. We got smart slippers and boat shoes that looked good. We bought a size bigger than he used to use as this made them easier to get on and off and as he wasn’t walking in them anyway so it didn’t matter.
Nowadays adaptive clothing is much more readily available with new companies starting up all the time offering a lot more choice. You can get some much nicer looking and more modern clothing with magnetic buttons or side opening seams for ease of access. If you want to look smart there are definitely more options available rather than just relying on baggy clothing.
Craig had a stretchy jumper that he liked to wear. Because it was stretchy it was easy to get on and off. I still have it and will always keep it as it reminds me so much of him. I was given an identical jumper by a friend and my cousin made a miniature jumper from it for a teddy bear. Its brilliant, every time I see it, it makes me smile. I’m also reminded of him if I see someone else wearing the same type of jumper - small things trigger big memories.
Some people take pieces of clothing and have them made into memory bears or cushions or even bunting. This is an individual thing and if you think this will help you then it’s worth considering. I still have lots of Craigs clothes so if I decide I want to do this in the future I still can.
Depending on which part of the body is affected first there are several aids available now to make life easier and to give independence for longer. Not everyone is happy with someone helping all the time and would rather try and do things themselves for as long as possible.
Several of the aids designed for older people are very useful and sometimes it’s a case of shopping around to see what’s available depending on your specific needs. For example, you can get a gadget that helps you put your socks on that was designed for people who have had hip operations or use a shoe horn to help getting shoes on. Some of these are short term solutions but effective at the time.
Craig wanted to appear as normal as possible so we always made the effort to make him look smart when we were out visiting friends or they visited us. It was important to his self-esteem to always be shaved and dressed properly, I think sometimes this can be under estimated, if you look good it makes you feel good too.
Author: Anita Newton