This is written from my own experience of living and caring for a loved one with MND/ALS.
In the beginning Craig was able to walk quite well but got tired very quickly. It was fairly evident that the disease was progressing, because the length of the walks got shorter and shorter.
He then noticed that one of his feet started turning inwards as he walked, drop foot I believe it’s called. This meant that he nearly tripped a couple of times. His foot felt heavy which added to the tiredness. He was seen by a specialist, part of the enablement team, who made a shoe insert, which fitted around his calf, helping him to walk properly. This worked for a short time before other issues arose.
He was needing to use the furniture for support around the house. We moved things to strategic points so he could navigate his way without help. He started to find it hard to get up out of the chair, he didn’t have the strength to support himself. He began to fall more often and he ended up in hospital more than once.
He was reluctant to use any kind of walking aid, preferring to manage by himself but eventually it became too dangerous. After a bad fall which landed him back in hospital, he agreed to use a walking aid around the house, which was easier and safer for him and less worrying for me. He wouldn’t however use it outside.
The next progression was to a manual wheelchair. He did occasionally walk a bit as well if he felt strong enough. He needed help getting up from his chair and into the wheelchair and vice versa. I had a lifting belt which I used. It fitted behind his back and had handles, so that I could use my body weight to lift him up. I was lucky that I was strong and fit enough to do this.
He still had some strength in his legs at this point and could stand a bit with my support. I could hold him with the belt and transfer him to the wheelchair. Over time this became more difficult, as the strength in his legs and core reduced. It was becoming physically hard for me and also dangerous for him, as his body needed more support. His head was much floppier as his neck muscles weakened. His head would loll forward without the support the chair provided.
We moved from the lifting belts to a mechanical lifting device. We had one upstairs and one downstairs. I strapped him in and then used the device to do the hard lifting. This was easier for me as not so demanding physically. It is important that you look after your own health in these situations. Lifting a large man is not easy and requires technique. I couldn’t have done it much longer as it would have been dangerous for both of us. If I had injured myself who would have looked after Craig then. You have to always have one eye on yourself as well as on them. You also have to be realistic about what you can manage.
We had a ceiling hoist fitted downstairs and in the bedroom, but never actually used them but it was there ready. Craig was adamant he wasn’t using it so he made sure he could manage with the other lifting device. His stubbornness helped here; I think! At the end he went downhill very quickly, if we had stayed at home he would have had to use it.
When we got the electric wheelchair, we had more freedom. I couldn’t push him far in the manual one as he was too heavy. He was able to drive the electric chair himself and it offered his neck and head support. We had to go back several times to have the chair adjusted as his needs changed. I had to put my foot down a bit with this, to make sure they saw him quickly and understood the need to make changes to the chair as he changed. I did learn that at times i had to be assertive to get the help I needed. Sometimes this felt like just one more thing to cope with and I wondered why others couldn’t understand how hard it was. If you have someone else to fight these battles for you, a child, sibling, anyone, it will make your life easier, its one stress that is removed.
The electric wheelchair had dual controls so when he got tired or was no longer able to, I could drive the chair. We got an adapted vehicle so that we could go out places. The wheelchair fitted in the back. As he became floppier as his core strength and the strength in his neck went, riding in the car became less pleasurable and I needed to stop every half an hour to adjust him, so that he was comfortable. The travel cushion I mentioned previously helped to keep his head still, but wasn’t fool proof.
In some ways I wished we had had the electric wheelchair earlier because it gave us more freedom. Covid restrictions were lifting and we were able to travel a bit now. If you can I would look into getting an electric wheelchair as early as possible, don’t wait until you really need it.
In fact, if I was to give you one piece of advice especially if your loved one is in the early stages or just been diagnosed, get organised straight away. Don’t wait, get things in place before you need them. The disease progresses so quickly and your needs will change often and rapidly. You will be surprised at how long things take and depends on where you live, you may have a good support system or a bad one. Unfortunately, you can’t rely on someone else to do things for you, you need to think about future needs and to plan ahead.
Author: Anita Newton