Here is a blog post from Martha, Ataxia UK Friend, where she talks about her ataxia story and ataxia care.
Hi, my name is Martha, here is a piece I wrote in support of Rare Disease Day 2025.
My 2 main avenues of interest were singing and golf. From 1971 – 1988 I sang opera in Europe. All the while in my off time I pursued golf to relax and enjoy. In 1988 ataxia changed all that!
The opera houses in Germany declared me a threat to others on stage. My contracts singing were cancelled and I got a disability pension. A new offer of training was given to me by Germany in theatre management. My balance and stability were affected by my progression of ataxia. Golf was impossible!
This bad situation moved me from the wet and cold of Germany and my luck changed in the warmth and dryness of Spain. Spain is now my permanent residence. It is here that I learned to change my disappointments into ataxia advocacy!
Ataxia, in the twilight stage of progression, requires a caregiver that can deal with the harsh realities of everyday living. It is not an easy thing to experience someone losing their capacity for functioning.
The degree to which someone loses control over their mobility, bowels, speech, dexterity, mood swings and swallowing abilities is hard to watch and deal with. Unfortunately, late-stage Ataxia puts the patient in such a position. But having to deal with all this is beyond depressing – especially if the caregiver is a family member you know and love.
Great understanding, comfort and having knowledge of this condition predicament needs a very special person. It’s a 24/7 job! But there are great websites available to help you cope on a daily basis. Visit website: miracle-answer.org. It is a great information hub for all things having to do with Ataxia
Being a caregiver for someone with late-stage ataxia makes you Rare and Remarkable!
Thank you to all those people who help people with late-stage ataxia. Without a cure you caregivers are our last line of defence.
