Living with Ataxia – Life Hacks

When we moved to our ‘forever’ home in 2013, we extended it to add a master bedroom with ensuite wet room. We future-proofed the bedroom by including a strengthened ceiling to accommodate a track hoist, moved in, and then forgot all about it…

Five years’ later, I was talking with a friend about the perils of falling. She had been caring for an elderly family member at home and had been told that following a fall, family members must not assist with the recovery (helping someone back up) due to the risk of hurting themselves or further hurting person who has fallen. She added: The person should be made comfortable, not be moved and the paramedics called. In most situations, this makes sense. It bothered me because I was falling about once every few months (not spectacularly) and Helen was helping me to get back up again. I didn’t want to risk injuring Helen, and I didn’t want to be calling paramedics every time I fell – surely they’ve got better things to do than pick me up! At my next meeting with my Occupational Therapist (OT), I asked her opinion.

The OT are agreed with the advice my friend had been given, but suggested I try a lifting chair. I had no idea what this was, but she explained that it was the same equipment that ambulance crews use. I agreed to try one. It is basically a thick mat which is deployed under the fallen person. A compressor inflates six chambers within. In a couple of minutes, a comfy and stable seat with back support raises you up to wheelchair height. The powerful compressor is powered by a rechargeable battery, so it can be used anywhere in the house or outside.

The lifting chair hasn’t stopped me from falling, it gets used when I need it. What it has done is improved my confidence when transferring around the home. Just knowing that I don’t have to struggle to get back up if I fall takes some of the stress away. It has also taken some of the strain off my wife who was finding that that lifting me was putting a her at risk of injury. I did try to record a video of the lifting chair in use featuring my son for Ataxia UK to use, but he was too light – he kept rolling off!

I rely on using my voice to control things around me. Like most people, I use my voice to compose text messages on my phone. As a writer, my voice is an important part of how I express myself. I have been using voice to text software since I was equipped with Dragon speech to text software to complete an Open University course in 2012. You can adapt the software to your voice and as long as you slow your speech down a little, it is pretty accurate. It sometimes misinterprets the odd word, and you always have to know what you are saying a sentence in advance. You also have two say the punctuation as you go – but you do get used to that. It works very well, as long as there is no shouting or dogs barking in the background! I have slowly used it more and more since, but still edit manually. My blog posts and most of my book have been written with it.

Helen bought me an Apple HomePod for my birthday last year. It quickly became indispensable. Music is a big part of my life; it enabled me to play it by voice command. I listen to podcasts and audiobooks while I have my lunch. I ask it to tell me football scores or fixtures, the time or date, the weather, which events are coming up in my diary, or to set alarms and reminders. I can use it to control my TV too. I like it when it complies with my name – “All right Richard, I’m on it!”. I interact with it more than real people some days! The only downside is that it will respond to anyone’s voice. Our kids thought they had to pretend to be me in order to tell it to play their music or answer their silly questions. They soon worked out that the HomePod only recognises me because my iPhone is connected to it, their deep-voiced impressions of me suddenly stopped. This connection to my phone enables me to send messages from anywhere in the house if I’m in distress. I haven’t used it yet, but again, it gives me extra confidence to be on my own during the day.

We have been trying a WAV (Wheelchair Accessible Vehicle) for the last couple of months. It was getting difficult for me to transfer in and out of our car, increasingly so since I was very ill with Covid in December 2022. Our WAV is a converted van, with a folding ramp at the back so I can just roll in and out. The balance of trust has shifted, it is taking some getting used to. I describe how travelling right at the back family car feels after having been a driver in a recent blog post.

With transfers generally becoming much more difficult, I decided it was time to get an assessment for a hoist. Thinking about using a ceiling track hoist and getting used to the WAV have presented further opportunities. A big part of my reasoning for doggedly sticking with a folding, manual wheelchair for everyday use was the relative ease with which it could be carried in the car. Now I travel in the chair all the time, the heavier power chair is finally more realistic option for me. At a recent wheelchair assessment, I took one for a test-drive and have ordered one. I have warned the kids and the dog that anything I run over in my new wheelchair will be completely destroyed! The more I think about it, the nicer it would be to move around my home effortlessly or tilt back to shift my weight. (I will still keep the manual chair for backup and off-road use!).

The first time we used the hoist, it reminded me of some friends we have who go climbing together. They have to have total trust in each other. Using the hoist, I had to trust Helen with my life. She said I looked “terrified”. The OT explained that it is easier to use with two single beds, one of which could be a ‘profiling care bed’. The OT carefully avoided calling it a ‘hospital bed’ because of the stigma of having care equipment in the home. It still touched a nerve. We’ve always had a double bed, for some reason, sleeping together as a couple has always been important to me. If we had two single beds, then mine could be a ‘profiling’ bed. I read recently in Still Me by Christopher Reeve (1998), that he and his wife slept happily in two single beds after his accident that left him with quadriplegia. Part of their evening routine was to spend time in his bed together sharing intimacy. Couples adapt, you don’t find love in the furniture you share, it’s already in you both. At 48, you’d think I would already know this. I wonder if I am once again at the point where fear and ignorance masquerading as pride is stopping me from embracing changes that would be difficult to get used to, but would ultimately improve my quality of life. Luckily, I’ve just written a book about how to recognise and deal with those situations!

It’s all about managing my fatigue as well as I can. Thinking even further into the future, using my voice for so many things has impressed on me the importance of banking or preserving my voice. Fortunately, Ataxia UK work with SpeakUnique to enable people with ataxia to create a personalised synthetic voice for use in communication aids. Although getting used to them may be difficult, I must not see any of these things as a loss of independence, just life hacks that bring extra freedom.

Richard C Brown MBE – April 2024