Ataxia has defined most of my life. I was born with hereditary spinocerebellar ataxia and I am a third generation ataxian! All of the girls in my family are affected. The progressive nature of this disease has affected my speech, balance, fine motor skills, swallowing, intestinal movements and my mobility.
About ataxia is a term for a group of disorders that affect coordination, balance and speech.
Any part of the body can be affected, but people with ataxia often have difficulties with:
But the greatest personal loss was my operatic career at the age of 38. After my diagnosis I was deemed a risk to be on stage, which left me devastated and feeling forced out of not just a career but something that I truly loved. Living in Germany, I was given a disability pension and offered a retraining programme in theatre management. Sadly, in time, ataxia forced me out of this programme too.
My partner was a huge support to me during this incredibly dark period. In fact, we even moved from a cold Germany to the warmer climate of Spain to try and help with my quality of life. As the disease progressed, we bought a mobility scooter to aid me.
To keep myself busy and active in Spain I threw myself into a project. I was involved/started the first palliative care hospice service on the Costa Blanca called Sweet Charity Hospice Fund. Unfortunately, due to stress and health issues (I had breast cancer and a mastectomy; my ataxia also continued to progress) I had to step away from the project and the service was discontinued.
Driving change and helping others with ataxia
At the age of 70, it is highly improbable that the wonderful new stem cell and genetic research into ataxia will benefit me, but leaving a legacy is important to me. My daily needs have helped me to understand the needs of others, and I want to help create a brighter future for people with ataxia.
It is through my experience, knowledge, passion and commitment to help that the idea for the Ataxia Care Project grew. The project aims to support people with ataxia through crowdfunding, making a difference to their living situation by funding home improvements, providing equipment and care assistance.
The Australia challenge—a virtual mapped mission from Melbourne to Sydney
Raising funds for ataxia care and research inspired me to develop a virtual fundraising challenge. The challenge combines sports, climate change, raising disability awareness and charity work, all of which are important issues to me—you could say I have found a way of joining the dots and combining my passions in one virtual event!
The Ataxia Care Project have utilised the expertise of Zento Event to create a special fitness virtual mission to raise funds and global awareness for ataxia. The event has been created to be inclusive for all ages and abilities. You can do it your way—run, bike, walk by yourself or in team of up to 10 people. The virtual mapped mission from Melbourne to Sydney, along the golden south west Australian coastline gives, participants access to Google Street View along the entire route.
The challenge is to virtually complete the route between now and 1 September. That’s a mere 1,250 kilometres!
Not one to shy away from a challenge I am taking part in The Challenge and I’m hoping to inspire others of all abilities to do the same. Due to my health and because of the weather, my participation is limited, but my caretaker is my nominated person to help me complete the challenge, and so far between us we have completed 120km since the 15 February.
Participants pay 25 euros to participate and after the 7 Euro admin fee to the website hosts, the fee goes to raising funds for care and research into ataxia and we are also working with the organisation One Tree Planted who will plant five trees for each participant who complete the challenge by the 1 September.
“Since hereditary Ataxia made having children genetically impossible on my own - the One Tree Planted organisation has given me the opportunity to create a new living legacy. These five trees planted for every participant of the virtual fundraising challenge are my gift to climate change and make a living legacy possible.
Rare Revolution Editor