I have always been a big dreamer. I dreamed to get out of poverty at an early age and I set very high goals for myself. Although I grew up in a bad neighborhood, full of violence and abuse, was married off at the age of 14 and was a teen mother, I still beat all the odds. All decisions were made for me for a very long time, but one thing I refused to do is give up! I survived. I made it through. I found peace and my faith. I found my purpose and pushed through it all. Honestly, I thought that I had been through so much in life that I thought nothing worse could possibly happen. Well, I was wrong. I now face the unexpected, most challenging thing I have encountered in my life…Huntington’s disease in my immediate family.
“Huntington’s disease 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. Every child of a parent with HD has a 50/50 chance of carrying the faulty gene that causes HD…Today, there are 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. Many describe the symptoms of HD as having, ALS, Parkinson’s and Alzheimer’s diseases – simultaneously.”
I am now caring for my mother, only 58. I began caring for her about 3 years ago. She had been homeless from place to place in Los Angeles, my birth city. My mother had been unable to work for many years. No money, no resources and no one willing to take her in. No one. This was hard for me to see. Although, I was never really close to my mother, I knew the right thing to do. This has been one of the hardest things to see and experience. How this disease takes your life slowly in your prime years. I believe she started to become symptomatic at around 35 years old. She never really made the best decisions or was the best mother, but I never thought this had much to do with HD. I am still unclear as to how much of her decisions were impacted by her HD.
Now I see the same fate with my older sister, also HD positive and symptomatic and only 40 years old. Never once planned this. The unexpected with no cure.