Right to Choice

Ataxia , along with other diseases and disorders, has found no cure. The suffering , can be either physical or emotional. pain. You do have options! But your choice may bring moral and ethical questions regarding this situation. You need to be legally informed. Your choice has legal consequences for your physicians and caretaker in the country you live in. It’s your life – your suffering – so what are your rights?

Only some options are legal in some countries. ( the Netherlands, Belgium and some states In the USA ) have embraced these measures legally. You have the legal responsibility to be informed about the choices you make. The Right to Die with Dignity group of your country can inform you of your current rights.

Your options: Euthanasia, Assisted Suicide, Palliative Care – pain management

Blog – Story

I chose everything in my life! But not Ataxia!

At 38 years old , Cerebellar Ataxia gave me no choice. Since the neurological disease is genetically pre disposed due to it’s hereditary DNA – the generations before my birth are responsible for its movement through my family. This is not a critical judgement of the generations before me – it’s just a fact !

The decision of my opera house employers labeled me as a genuine threat to other people on stage. The doctors and neurologists were telling me to change my profession and retrain for something else. But what ! They couldn’t say !

Call it karma or the luck of the lottery! But if you know anything about the disease, you wouldn’t choose to be connected to it yourself. 25-30 million people worldwide have some form of Ataxia that affects their lives. Being one of the millions of others also affected by this rare,  incurable neurological disease, I have spent most of my lifetime trying to cope with the progressive nature of the disorder . It has been a necessary learning experience but I have managed to cope with the situation.

My type of cerebellar ataxia is Spino Cerebellar Ataxia type 6. Having this neurological disease is NOT something I would chose on my own. It was thrust upon my sister and me by my parents who made the uninformed decision to have children and carry on its hereditary DNA. Research wasn’t so knowledgeable as it is today. My sister made the informed decision, knowingly, to have children. So the hereditary nature of the Ataxia might go on with her. That was her decision!

I on the other hand – decided NOT to have children. So with me the buck stops here. You do have a choice ! My DNA gave me this condition of Cerebellar Ataxia. But having it has given me a first hand perspective of the neurological disease so that I may inform people about Cerebellar Ataxia in the future.

The Ataxia awareness website :   https://miracle-answer.org.   gives people an informed tool to cope with the situation.

Blog-Story

Blog – Story

Biography

Biography

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