When a parent or loved one becomes ill, we know that we have some information or at least have medical experts who will help our loved ones through the most common diseases. But, when your parent or loved one becomes ill with a rare brain disorder, what do you do?
In 2016 my mother, Martie Mattish, became ill with CJD – an extremely rare, degenerative brain disorder.
At the time, my mother Martie was seventy-five years young and still driving herself to work every day. She enjoyed life and would even have a glass of pinot grigio with dinner. At first, she began to forget words or could not get the words out of her mouth. Then, she started to lose her speech altogether while also losing partial mobility in her arms. She was visibly frustrated because she would try to speak and move but could not. Oddly, she absolutely understood everything being spoken to her. After multiple hospital stays for what we thought were stroke related symptoms, we were told the devasting news – she had Sporadic Creutzfeldt-Jakob Disease – CJD. At the time, I was teaching biology and taught all about genetic mutations and common diseases associated with those mutations. I had never heard of anyone having CJD!
Watching my mother decline to CJD was not easy. One day she was driving to work and cognizant of the world around her and the next she could not speak or move. Unfortunately, we were given the horrible news that CJD is terminal. Six weeks later, my mother passed away.
Martie Mattish, my mother, is deeply missed but dearly remembered…
My hope is that with everything else that time, money, and effort is spent on that one day soon, in our world of advanced technology, CJD will be eradicated. In the brain, CJD literally teaches the prions in the genes to attack themselves so the cells can no longer replicate. Please join us and the efforts to help further the research on CJD!
Sami Achkar