When I was a young girl maybe about 6 or 7 years old in LA, I remember my grandmother coming to California from Mexico. My grandfather had just passed away and her children had decided to bring her to the states . My grandmother was in her late 30s early 40s. I remember she did not know how to speak any English.
I remember seeing my grandmother sit on the couch and have mild shakes in her hands and feet . I remember she could never sit still. When I ask my mom what was wrong with her she would just say, “Grandmother is sick.” She seemed ok overall and I could communicate with her very well her. It was just mild shaking.
As a years progressed my grandmother got worse and worse to the point she could no longer remain still. She got to the point where her movements got worse and worse. My grandmother needed assistance to bathe, get dressed and to do simple things such as feeding herself. As I got older I asked what was wrong with my grandmother and I was finally told she had Parkinson’s disease. As I got older I did some research on Parkinson’s disease. For years most of the family thought my grandmother had Parkinson’s disease.
Unfortunately, my grandmother did not only have mobility issues she also exhibited many psychological problems such as depression, anxiety and mood swings. She seemed almost childlike in some of her behaviors. She was also a very heavy smoker which did not make things easy on her health. I remember every time I visited my grandmother I was confused about her situation, but I never got involved as I got older I separated myself more and more from the family. It was very hard for me to see my grandmother this way and I didn’t understand the disease. I would visit her periodically and every time I saw her she was worse.
After a few years I got a call from my mother saying that her uncle had passed away. It was this day that I found out what had tormented our family. After the funeral of one of my oldest cousin’s and I started a conversation. I made a comment about my grandmother and mentioned that her Parkinson’s had gotten worse. He looked at me and said, “Eva, your grandmother does not have Parkinson’s disease . Everyone in the family that has had these symptoms has Huntington’s disease.” I replied in shock, “What do you mean it’s not Parkinson’s? What is Huntington’s disease?” He said he was not sure what Huntington’s disease was exactly but he knew that everybody in our family that had shown symptoms like my grandmother had Huntington’s disease. This was the first day, over 10 years ago, I remember hearing the word Huntington’s disease.
That same day I went home and I googled Huntington’s disease. I could not believe what I was reading. I was in shock, disbelief and anguish. I immediately called my mother and my sisters and explained to them what I was reading. As I read the description on Huntington’s everything else became more and more clear. My grandmother had all the signs of Huntington’s disease, both physical and psychological. When I found out that Huntington’s disease could be carried on from one generation to the next I was instantly afraid.
“Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure.”
If my grandmother HD, my mother had a 50-50 chance of carrying the gene. Unfortunately, after multiple requests, my mother refused to get tested. After my research regarding HD I was almost certain my mother was positive . I started noticing some things with my mother both physically and psychologically. Over the years my mother have not made good decisions, those decisions strongly impacted my life negatively. She also struggled with depression and an array of other issues.
Given that my mother had refused to get tested, I was inclined to get tested myself.
This was the first time I heard about Huntington’s disease. This forever changed my life.