The back story!

Much of my life has been pre- determined by the neurological disease Spino Cerebellar Ataxia. My professional and personal life was been impacted by this situation. Only 36 years of my life had any sense of normalcy and routine. From child prodigy in Broadway musicals to classical music studies. On to an operatic career and theater / cultural management. A pioneer in hospice care and charity director on the Costa Blanca – Spain. Then on to new projects as a solution project seeker ! ( see the website biography )

All of these endeavors have been impacted along the way by the progression of the neurological disease Ataxia. But nothing has added more satisfaction than the knowledge that the impact of my efforts with the Solution Project and my website in 2020 has affected many people in a very productive way.

Now at 70 years old much has developed in the research of Ataxia and the Spino Cerebellar Ataxia types. Since the timeline of my Grandmother and my battle with this disability – much has changed ( for the good) in the research area. Genetic studies and treatments have advanced the understanding of Ataxia and how we can cope with this neurological disorder on a daily basis. But there is still no cure! We will see what the future holds.

Biography The Back Story

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 !


Blog – Story



The Caretaker

The Caretaker

A Cure?

A Cure?

Ataxia – a tale of survival and hope

A Member of the Solution Project

“The doctors stood around my bed as they gave their diagnosis of the neurological tests. They were all unanimous in their decision. They all said I would need to give up my singing contracts and start to retrain for a new profession. But what that should be, they didn’t say. This was a scary pivotal moment in my life. “

A Member of the Solution Project