The Ataxia Diet since 1986 !
Ever since 3 generations of women have been affected by Spino Cerebellar Ataxia – In 1986 my mother, sister and I took part in the research of Dr. Susan Perlman at the Los Angelos Ataxia Center. We were asked to be a family based study of the Ataxia Diet. The diet study is today the basis for further research into the nutrition of Ataxia patients. This study formed the basis of my personal commitment to finding everyday solutions to living with Ataxia.
Now that I and others have poured time into genetic studies, solutions and hope we are all interested in finding a cure for Ataxia. Being 70 years old – we still don’t have a solution to the issues facing Ataxia. Organizations and charities such as Ataxia UK, the National Ataxia Foundation of Minnesota USA, FARA – USA and FEDES – Spain, have struggled to find treatments and ways to deal with this neurological disease Ataxia. But after more than 50 years of my lifetime searching – we still don’t have a cure.
Maybe it’s time to add a new technologies like Grace the nurse assistant or Robear of RIKEN research of Japan to help with the daily issues of this progressive neurological disease in private homes and elderly care homes. We need to look at every phase of the disease progression . With elderly patients in mind – the Solution Project and I have expressed a willingness to find researchers to help in the search for solutions to the everyday issues facing Ataxia patients. The new technologies are crucial to the future of Ataxia. 🙏
Body betrayal – coping!
My mother told me a story about the beginnings of Ataxia.
#1 – Ataxia ( which she didn’t know about ) and how her body betrayed her at the age of 13 years old. Her brothers played a nasty trick on her while ice skating. She lost her balance a lot while skating and her brothers left her to get up from the ice all wobbly and out of control of her movements.
# 2 – She always was left sitting by a fire when my father took me and my sister sledding or skiing. Wet and cold slippery surfaces we’re not her thing ! My mother made sure that Southern California and South Florida was the place to live were regional areas of dry and safe walking conditions existed.
#3 – Ataxia being in her life was a hard adjustment. Back then ( 80’s ) the mobility services were limited. But one story of joy sticks out particularly when she lived in Florida . The Disneyland people had her lead the main street parade on a scooter.
You can choose to be miserable or choose to be joyous! CHOOSE !