Meet the members of the National Ataxia Foundation, Northeast Ohio area support group - Ernie Green

Meet the members of the National Ataxia Foundation, Northeast Ohio area support group and the organizers of the 2017 Northeast Ohio Walk n’ Roll to Cure Ataxia. Find out who some of the people with Ataxia in Northeast Ohio are and find out the stories behind the disease and donate at http://www.ataxia.org/walk/NEOWalk to help them and others.

Below you can learn a little information about Ernie Green, a member of the National Ataxia Foundation Northeast Ohio support group.

My name is Ernest Green. I was born in Fall River, Massachusetts on May 3rd 1951. I retired at the age of 62 in May 2013, after 32 years of service with the Department of Defense. My career consisted of 14 years of military service and 18 years as an Information Technology Specialist (Networks); which included all subdivisions of computer management. I have been married to my spouse for over 45 years. We have two adult children and seven grandchildren ranging in age from 2 to 21. I was diagnosed with Machado-Joseph disease (MJD) otherwise called Spinocerebellar Ataxia Type 3 (SCA3), December of 2010.

Ataxia was a major factor in my decision to retire. Even though I was able to complete my daily routine assignments, retirement was not even a consideration. The day I decided to retire was the day I lost my balance and fell while holding my new grandchild in my arms. Since then, the battle with ataxia began.

When I wake up in the morning, the first thing I do is thank God for another day. Now comes the fun part, lying in bed with my legs feeling numb, wondering if this is the day I will not be able to stand and walk again. I struggle daily with the constant pain and weakness in my legs, hands and arms, balance control, walking, muscle contractions and neuropathy. I cannot open those plastic bags that meat or cheese comes in and my wife needs to button my shirts. So, how do I describe my day to day life – challenging!

But my positive outlook on life is based on my faith; “I live in the fullness of God.” And even though you may see me as being disabled; my God sees me as being perfect. That is what drives me to continue my daily fight to live. I believe in God our Father; I believe in Christ the Son; I believe in the Holy Spirit; Our God is three in one; I believe in his resurrection; He will rise again; I believe in life eternal; for I believe, in the name of Jesus. And one day I will run again and feel no pain. My inspiration to go on comes from the book written by John Ortberg: ‘When the game is over, it all goes in the box.’

If I had to choose a soundtrack that describes my life it would be; ‘Warriors’ by Phil Driscoll.

I inherited the genetic condition known as Machado-Joseph disease from my mother. Her mother (my grandmother) also had symptoms; she inherited the disease from her father (my great grandfather). He emigrated from the Azores in 1903 and passed away in 1915. There was no formal diagnosis back then based on DNA; but family members told stories of his lack of balance and inability to walk. His neighbors all thought he was drunk when he staggered home from work.
Researching Mother's family history revealed a common thread among her ancestors. Many had ataxia-related symptoms. We now suspect that this mutated gene has been passed from generation to generation. I've read that when a parent has children, 50% of those children are at risk of inheriting SCA3.

Mother passed away at the age of 85 in June 2011. She was wheel chair bound and had ataxia in both her hands and legs. Of her six children, three have been diagnosed with the Machado-Joseph disease. And I am one of them.

Ernie is participating in the 2017 Northeast Ohio Walk n’ Roll to Cure Ataxia this year, and you can donate on his behalf at -https://ataxia.donorpages.com/WalknRoll2017NEO…/ErnestGreen/