Name: Alison Love
Age: 46 years
Where do you call home? Paisley, Scotland
Education degree(s): BA (hons) Community and Youth Work
What is your relationship status? I am single (divorced) living on my own
What's a typical day for you? I live on my own in an adapted flat with daily support from carers who help with showering, cooking, going to the gym and going to meetings. My routine can be quite monotonous but is broken up with the many meetings I attend. I have regular meetings in London with Ataxia UK, as I am currently a trustee. I am the treasurer for a local disability arts group. I also do some work around neurological issues, locally with a group Neurological Voices and nationally (within Scotland) with the National Advisory Committee for Neurological Conditions.
How long have you known you are living with FA? I was diagnosed in 1996. I went to my doctor to find out more about my wobbly walk after a policeman arrested me for driving under the influence as he did not believe that I was sober (which I was). This began a year of tests before I was diagnosed with Friedreich’s Ataxia. I was 24 years old when I was diagnosed.
Are there any others with FA in your family? I am the only one in my family with FA.
Describe your transition from walking to walker/wheelchair. I probably started using a wheelchair too soon...about 6 years after diagnosis. I walked using two sticks and fell a lot. At the time I worked with children and was always worried that they would accidentally knock me over. I gained a lot of peace of mind when I started – secure in the knowledge that I couldn’t fall over. I stayed in my job for another 7 years and believe that I helped a lot of children to understand that people who use wheelchairs are not too different from everyone else and are not people to be scared of. For them, I made using a wheelchair normal.
What do you like to do to stay active and what type of exercises work for you to stay strong? I go to the gym twice a week. The gym has a lot of equipment that I can use without transferring from my chair. I do a lot of arm and upper body exercises. I’m very aware that I need to do more work with my core and my legs in order to weight-bear for as long as possible.
Do you have any hobbies or special interests? I’m not sure that I do. I enjoy the usual reading, TV, eating out, shopping, traveling, and going to the cinema. I especially enjoy going somewhere (anywhere) to ‘people-watch’ with a cup of tea and a slice of cake!
When FA gets you down, what do you think/do to feel better? FA does obviously get me down but I’m not sure what I do to make me feel better. I try to do at least one thing a day to make me happy. Having a ‘win’ each day is vital for my mental health. This can be as simple as wearing my favourite colour, having tea and cake or my having my favourite food for dinner.
What is one way living with FA has POSITIVELY affected your life? Living with FA has made me a stronger person and I care less about what people think of me. I honestly think that I would’ve found some things in my life much harder to deal with had I not had FA. I have been to a lot of new places, met a lot of new friends and had a lot of new experiences and opportunities that would probably not have happened without FA.
What is a favorite motivational quote of yours? ‘The way I look isn’t who I am’
What is the best advice YOU could give to a person who has been newly diagnosed with FA? You can do anything - you might have to really put your mind to it or do it differently but keep doing what you love.
"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? I wouldn’t be who I am if I didn’t have FA, but I am me regardless.