This is written from my own experience of living and caring for a loved one with ALS.
I have written on more than one occasion over the past few weeks about the gadgets that can make your life easier, as well as sharing with you some of the things we did in terms of making or adapting equipment, to allow Craig independence for longer or to help him cope when his mobility was lost.
You must forgive me if I touch on some of those things again here.
Craig spent quite a lot of time on the computer. He also did a lot of selling on eBay something that was a passion of his. He was a great collector of car memorabilia including classic car radios and head lamps as well as book and magazines. His intention was that he would sell these to fund our retirement. I am left with now having to sell them in his memory.
As the disease progressed it started to restrict his use of the computer. It sounds like a small thing but it wasn’t, he was starting to lose freedom in so many other ways, so to not be able to look at news stories or research something he was interested in, would have been just another blow. The Occupational Therapist arranged for someone to come and adapt his computer so he could still use it.
The enablement centre who dealt with all the technical side of things came and assessed his needs. To begin with they installed an arm rest on a pivot, that moved very easily. He rested his arm on this to be able to move the mouse around. Unfortunately, this was only useable for a short time. He very quickly reached the point when he had no movement in his arms or hands apart from a slight movement in his index finger. So, to make the controls easier to use they gave him a mouse mat, that he could tap with his finger when he wanted to confirm something. They also installed a foot mouse which he could use to scroll back and forth and up and down. They came back several times changing different things as his illness progressed. All these adaptations meant using the computer was still slow but doable. He still preferred someone to sit with him and help him navigate, simply because it was quicker.
We invested in a baby monitor, one of the best things we did. My hearing unfortunately is not good, so sometimes I didn’t hear him call, especially as his voice was changing and losing its strength. We had them set up in the study and the living room, so he was always in contact with me. I wore the monitor around my neck so I could always hear him. It was two-way, so I could check on him as well, if I needed to. This came about not just because i was struggling to hear him but because he fell in the study once and couldn’t get up and I didn’t realise for a while. The incident upset us both as he was hurt and needed to go to hospital and I hadn’t been there. I blamed myself.
One of the most difficult things for Craig in the early days was having to do a voice bank for the eye gaze. The speech therapist came to see us and explained what would happen over time with his voice and his ability to swallow. The loss of his voice was the most terrifying thing for him because he was a communicator, someone who loved to talk, he had an opinion on everything! He frequently went on local radio to debate current affairs or would spend hours talking to his friends on the phone.
He told me from the onset that once he lost his voice, he didn’t want to be here anymore. Once I could no longer understand him, that would be the end for him. Luckily, I could understand him, even in the last weeks. Others couldn’t, but he didn’t mind me translating what he had said, so we got by that way most of the time.
He did have an eye gaze, which was useful in some respects especially when they programmed it so he could turn the TV on and off or change channels. He found the eye gaze slow and difficult to use. He stopped going out with his group of friends because he got lost in the conversation, he couldn’t keep up with them, once he’d typed a response, they had moved on to the next topic. He preferred to just meet with one friend at a time.
The eye gaze is an amazing machine and can give you so much freedom and independence. You can pre-program responses if you know you are going somewhere or just add common phrases or questions. I have seen others use it and they seem to be much quicker than Craig was. I think he was reluctant to use it as it was acknowledging his voice was going. It was strange hearing his voice come out of the machine though. I did record some of the phrases from the memory bank before I returned the machine, so I could hear his voice later.
The eye gaze needed practise and patience to get the full benefit from it. I think because of Craigs reluctance to use it we didn’t really get to appreciate its many benefits.
The enablement centre was brilliant and it never ceased to amaze me the adaptations they could provide. I’m not very technical so didn’t really appreciate the things that were available. I’m sure now, five years later, there are even more things on the market such as Alexia and similar devices that can turn lights on, control the heating and Tv and so on. I think it would be easy enough to find out if there was something specific that you needed.
I’m of a generation that isn’t constantly tied to my phone or social media (although that’s changing) so it wasn’t a natural reaction to keep taking pictures and videos of Craig. I did take some and I’m very glad I did, especially early on when you couldn’t really tell there was something wrong but also to track his illness. Now I’m starting to enjoy looking at them, one in particular where he is giggling, his voice has changed but in some ways that made it funnier. I wish I’d taken more pictures and videos of him and of us. I cherish the ones I have. I would definitely recommend it, even if to begin with you aren’t able to look at them, at some stage when you are ready you will be glad you did, especially if you have children or grandchildren.
Author: Anita Newton