Jay Patel is an All About Ataxia facilitator and shares his experiences of living with ataxia.
I have SCA28. Most of my motor functions are affected to some degree. The main symptoms for me are my slurred speech, I choke more easily when eating/drinking, I am unbalanced when I walk, I can get fatigue, I have less bladder control, my eye movements are impaired and I can’t read a road sign properly while moving. There is also the mental impact of these physical symptoms. There are days when I may not feel up to going to work or going to meet people and I may have days where I feel down.
Most of these symptoms are mitigated to some degree by taking my time and planning. It also helps to let others know, for example at a pub so I can ensure we are at a table on the same floor as, and not too far from, the loos. My employer, as they are required to do by law, has made adaptations that ensure I am able to continue doing my job effectively, and there is an open dialogue so they can keep reacting to my changing needs. In general it has also helped to share with friends and family that I see. They can help in certain situations (carrying a bag, walking in front of me in a busy venue, etc) and they can just keep my condition in mind when planning things. Early on I didn’t want to share with anyone, but it has helped a lot!
Living as healthy a lifestyle as possible is obviously good for anyone, more so for me than for someone without ataxia. This allows me to continue to have drinks with friends or eat out.
Having ataxia has actually made me more emotionally intelligent as I am more considerate of others, given that I understand that not all conditions are visible! I am more sympathetic towards other people especially when I am aware of their issue.
During my diagnosis journey, when the consultant was fairly certain I had ataxia, he referred me to the ataxia clinic at Queen Square in London. The nurse there provided lots of information about the condition itself and support that is available, including Ataxia UK.
I became involved with Ataxia UK, simply as a ‘friend of ataxia’, soon after being made aware of Ataxia UK. Ataxia UK has provided me with support ever since I was made aware that I have ataxia. When I was in a position to do so, I wanted to start giving back to the charity and be part of the effort to support others who live with ataxia.
All about ataxia helps those that are at the start of their ‘ataxia journey’ to see that life doesn’t end with the diagnosis. It helped to see and hear from those living with the condition for years how they manage their daily lives. They can also share a lot of helpful tips. It helped to put things into perspective and to step back from the initial diagnosis, and look at the bigger picture, which is much better. It just made me feel more comfortable with the whole situation, and made me feel less alone/isolated!