This is written from my own experience of living and caring for a loved one with MND/ALS.
We are all well aware that everyone’s journey is different but there are communalities between them and my experiences may be helpful for you at different stages.
As the disease progressed, we started turning our attention to trying to maintain some movement in Craig’s joints and limbs to ease discomfort.
There are different schools of thought around how much physical exercise you should do, some articles I read said that the more you do the stronger the good muscles will become and the longer they will last, whereas another article said that the muscles will wear out quicker with physical exercise. We consulted our physiotherapist, who basically said it was down to us to decide.
We thought it would be good to try to keep moving and keep his core strong for as long as possible, so we asked for exercises to do around that idea, of not allowing Craig to seize up and get uncomfortable. The exercises changed as he became weaker. He could do them himself to begin with, then I helped him and then later it was really just me doing the work.
I did exercises with him all the way through his illness, usually in the morning before getting him out of bed. I would stretch out his legs, move them around and massage them, similarly with his arms and hands. In the later part of the disease when his skin was thin and delicate, he could only cope with gently rubbing.
It helped to flex his hands and fingers regularly as it stopped them hurting. Using baby oil is a good way of massaging gently without pulling the skin. Keeping his hands warm also helped to make them more comfortable. He sat with a pair of socks in his hands when at home. In the earlier days he would squeeze the socks to try to keep his hands mobile but when they stopped moving altogether, he used the socks to stop his hands closing up any further.
Another good tip, using everyday objects, is using rolled up towels to support their head whilst sitting, to stop it moving around. The chair he had supported his head from the back but didn’t stop it moving from side to side. We also used a travel cushion for this when we went out, especially in the car, because the car made his head loll about more. We turned the travel cushion around, so that it supported his chin, keeping his head relatively still. We also used this at night. Craig sat up in bed to sleep so his head needed support. You can get specialist neck braces which we did try, but Craig didn’t get on with them and preferred the travel cushion or towels.
It is important to get good advice from professionals, ones that you trust. We had a team working with us, because the hospital Craig went to had a specialist ALS unit. We had an occupational therapist, physiotherapist, psychiatrist, speech therapist, dietician and at the end a community nurse.
In this instance covid worked in our favour because lots of people opted not to visit hospital or have outsiders in their homes, so we had easy and fast access to all of these. Whether we would have had in normal circumstances I can’t say for sure, but we never had to wait long to see anyone if we asked to. Equipment was always delivered quickly and sometimes the next day, all of which made it easier for us, especially when at times things changed so fast.
This team of professionals were lovely and built up a good relationship with Craig and myself. This for us was important, as Craig didn’t work well with people he didn’t like.
There are lots of alternative treatments available and we like many in this situation were happy to try anything we thought might help. There was some discussion at the time about stem cell therapy and I looked into this as I’d seen that someone else had opted to go down this route. However, it was very expensive, covid had stopped lots of treatments and there was no concrete proof that it would be of benefit. I think maybe when you are desperate you are willing to try anything. I can’t tell you that is wrong but what I would say is make sure you consult professionals, your doctor and your specialist, before making any decision. I’m making these comments based on what I looked at 5 years ago, so things may have moved on by now. We did ask our doctor and he said that he wouldn’t recommend it for various reasons, many similar to those I’ve mentioned.
We were hampered with finding alternative therapies that were open. Because of covid a lot of places had closed and there was nothing on the NHS that was available. We probably would have had to wait too long to get any help this way anyway. The only option was to go private.
We visited an acupuncturist, to help with the pain he was having in his limbs, which helped for a little while. We stopped going as Craig was unable to get up the steps to her practice or get on the table for treatment. If we’d realised this would be an issue, we could have asked more pertinent questions before choosing this acupuncturist but it wasn’t something that we had even considered. We were a little naive about the illness and how it would affect him.
Similarly, when we did eventually find a hydrotherapy pool that was open and they could fit us in, we were in the end restricted because the pool didn’t have a hoist. Craig only managed a few weeks before he was unable to get out of the pool. If we had had more choice, we could have found one that had a hoist, which would have allowed us to keep going for longer.
The hydrotherapy pool was great as it allowed him to move. He was able to stretch out his joints and with the help of the physio move every part of his body, something of course he couldn’t normally do. He loved it. The warm water was also soothing and relaxing. I would definitely recommend this to you.
The only drawback was the facilities for getting him changed again afterwards. I was on my own, so there would have come a point when I couldn’t manage to lift, dry and change him without the help of a mechanical lift. If there is more than one of you then obviously this might not have been a problem.
We did go swimming a couple of times too but I had similar problems, the pool did not have a working hoist and the changing facilities were not really suitable for our needs. He did enjoy it though when he was in the pool.
I did also consult an herbalist, who was a friend of mine, who suggested different natural remedies, herbs, vitamins, and minerals to take to help with cell activity and energy. I had already researched this aspect myself so Craig was already taking a concoction of tablets that I’d read would help. Whether they did or not I have no idea but he diligently took them until he was unable to swallow them anymore. The herbalist also recommended removing all electrical devices, but of course this wasn’t practical, as his bed and lifting equipment needed electricity.
We looked into getting involved in trials but because of covid they had closed down and they couldn’t tell us when they would be up and running again. Craig was very keen to get involved in any trials in the hope that something might help but also so that he could hopefully benefit someone else in the future. This was very important to him and one of the reasons I feel so strongly about sharing my own experiences, in the hope that it helps someone else. In the end any trial group that did respond to us said that Craig was too far advanced to be able to participate.
The ALS association will have information about trials and so would any other organisation that supports ALS sufferers. Equally googling it will tell you what is available and who is eligible. If it something you feel you would like to do, I think it’s very worthwhile. I always think that if no one volunteers then how are we ever going to find a cure. It might not benefit you directly but might benefit someone else in the future.
Author: Anita Newton