Our Friend, Alan, has contacted us following his ataxia diagnosis. Here, we bring you a story of his diagnosis, his daily life, struggles and coping mechanisms. If you find yourself in a difficult situation, our Helpline is here for you. Call 0800 995 6037 or email help@ataxia.org.uk. The Helpline is open Monday to Thursday 10.30am until 2.30pm.
I started experiencing symptoms and was diagnosed with Spinocerebellar ataxia (SCA6) in 2018. This is a progressive (genetic) neurological condition that has been passed down to me. It mainly affects my balance and speech. It is a progressive condition and there is no cure at present. The symptoms i.e. the stiffness and my speech have got progressively worse over the last few years. As a result, I have struggled to find work and have not done any paid work since June 2022.
My overriding emotion is fear, fear of not having enough money to survive, fear of how I am going to get through the next few years, fear of the impact to my wife and children, fear of the impact on my wife as I rely on her so much. I also experience the emotion of anger, anger that I am suffering this condition, anger that this has been passed on to me, anger that I only seem to experience support from my wife and no one else, I have asked several people to provide support specifically for my wife and it hasn’t been forthcoming. Anger that people do not really understand the condition and do not appear to understand the problems I go through every day, as a result people do not seem to ask me how I am doing. If I try to talk about the feelings and symptoms, I am experiencing they change the subject. As I make my way in life outside, people tend to give me a wide birth. Naturally, in trying to cope with the way I behave, my wife has to take out her frustrations, this worries me, in terms of how all this is affecting her.
The other main emotion I feel is guilt. Guilt, for forcing my wife and children to cope with this, guilt that I am not the same person they knew several years ago, guilt and frustration at things I used to automatically use to be able to do such as jobs around the house, mowing the lawn etc.
These are personality traits I am exhibiting. I feel I don’t support my Wife and leave her on her own for everything. My daughter is thankfully now at university, but my son is in his GCSE year at Secondary School. I deal with most of the emails, but my wife has to take him to parents’ evenings and check on his progress. I am just worried about these exams for him, probably without reason?
I am “emotionally numb” for example when I see pictures of conflict in the news, I know I should feel terrible, but I feel absolutely nothing. I am too focused on my day to day struggles to think about anything else, regardless of the suffering of others.
I do not seem to be able to follow anything through. Here is a good recent example. I volunteer 2 days a week for the RSPCA. About a month ago, I went with my wife to their head offices at Horsham for a 2-hour meeting. At the meeting, they gave me a brand-new second screen, to make my life easier. I took it away and it is still in the box. I have not put it together. I find the things I have to do overwhelming, so end up doing nothing.
My main coping mechanism is to keep busy, and I currently do some volunteering. Also, I find having something to look forward to i.e. a theatre trip or football match etc helps.
