My challenge and journey with Ataxia

I was born youngest in a family of 11. From teen I witnessed my father (who was about 50 at the time), physical conditions deteriorated and stopped work. My mother even thought he was lazy and wanted to just stay home. Better understanding his conditions now, it must be scarcely for him to cycle (he cycle to hawker for a living) on the road then. (1970s)

Looking back, I developed intellectually only after 18 years (although I studied very hard) when decided that I was not the study type and gotten ready to go work. I went on to complete my higher secondary and architecture in local university.

In my forties, one followed by another of my brothers (I have 4 surviving brothers) physical and mental conditions deteriorated (some more than others) and I started to be very concern. When my own conditions were affected, I promised myself to find out the root cause. Various medical consultation brought me to the Nero-science Institution of Singapore. A series of test including brain scan, led to a few rounds of genetic lab test. After 3 rounds, it was confirmed that our family condition was known as “Spinocerebellar Ataxia 08”, a rare genetic condition that has no known cure or medication.

3 years on since diagnosed, I am still active, working full time but feel tired at the end of each day however is not able to sleep well at night. I am fairly independent now but concern that I will soon be losing that.

I am divorced for 10 years and currently have a partner who knows and accepted my conditions. But I always felt that its unfairly for her- enjoyed only a few good years and having to are for me for God knows how long.

I had also spoken to my 2 grown up sons (from first marriage) about my condition and the possibility of them inheriting it. My counselor from Neuro-science Institute of Singapore was kind enough to offer her confidential counsel to both. Deep in my heart, I know I would not have them if I knew that I could pass ‘this’ to them (and had told them so). Having said that, it was comforting to know that with medical advancement, there might be cure in future or at least better care. It was also good to know that they have the option of ensuring that the genetic conditions are not passed down to their children with advance technology as we speak.

At the moment, I am most concern about losing my independence and intellectual capacity, having to stop working and needing care (unfair to my partner). Besides if I have enough savings for all to come.

By sharing, I hope to show that there are others like us and I would love to know about concerns that other individuals or families have. And of course if there are advise.  

I hope to be able to share more details of my conditions and challenges when able to put them into words.