The Unexpected

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.





There are Good Days and Very Bad days

There are good days and very bad days when you care for someone with HD.

Today was a better day as I caught my mom smiling and laughing. I took her for a short short outing and she secretly bought candy. This is one of her major vices. She should not eat candy, but seeing her smile and laugh as she got caught, made me happy. These are some of the very few good moments of caring for someone with HD.
I currently care for my mother and sister, both struggling with HD. Both are in different stages of the disease. One of  most difficult things to deal with a person who has HD is how irrational they can be. This past week my mother wanted to move out of my home! I have been her caregiver for a few years now since you slowly started declining from HD. My mother can no longer take care of herself independently and she can no longer work and/or drive.
Currently she is struggling going up and down stairs and getting to her bedroom is an issue daily. So I made some alternate sleeping arrangements and I moved my mom downstairs. She about lost her mind! She was angry and she said she wanted to move out of my home. Mom has nowhere else to go, but she did not care. She had already made her decision to move out.
Earlier last year I designed a Murphy bed for her downstairs and I designed a space knowing that she would need a place to stay as her HD progressed. Mom knew this change was coming, but the next day after change she said she was moving out. She was moving about an hour away from my home with someone she knew from church. I explained to her that she could not move out and that I was her caretaker. She had a major tantrum. 
There are many times feel my mom is  being mean and stubborn, but I am slowly learning this is part of HD. It is very hard to deal with her at times. Mom is like a child at times, a very unreasonable child. She still thinks she can drive and work. I have to remind her daily that she can no longer drive and that she can no longer work. We talk about this often.
Everyday is a new challenge. Every person affected by HD could experience very different symptoms. Caring for my mother and my sister with HD, at the same  time with different
symptoms, has been one of the most challenging things I have had to encounter in my  life thus far.

Mom does not know Best! The struggles of HD

Today was a very challenging day with mom. Everyday is a different challenge with her.

Today, once again, my mom who can not care for herself anymore decided she wanted to move out of my home.  The first thing that came out of her mouth today, was ” I am moving out. I already spoke to a sister from church. I am leaving.” Why is she so upset? A simple change in sleeping arrangements in our home. This is for her own, well-being, but mom does not see it that way.  Mom can not go up and down the stairs anymore. She struggles daily. Yet, she decides she wants to move out whenever things do not go her way.

We had a  nice Murphy bed  built in my downstairs office for her. This would be easier for her, but she could care less about it. Today she threw a tantrum. Yes, at 59 years old, she has tantrums. She does not know what is best for her. Many times I feel like I am walking on egg shells with her. Will she be happy, sad, depressed, or what will it be today? With HD, things are so unpredictable. Over the last five years, my mother has gotten worse. One day she is happy, other days she is not. She has turned into a child in many ways. My mom is slowly teaching me more compassion and more and more patience. She has tested me so much in the last couple of years.  In her mind, mom thinks she can still drive. She is in pain daily. In pain of some sort. This year I started her on CBD oils. This has been super helpful. She is currently taking a few meds, but this is by far working with her.  Prayer has gotten me through days like this.

So when was the first day I heard about HD?

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.

Follow my story…

My life has not been easy, but whose life has? Getting married off by my mother as a newly turned 14 year-old my life was bound to change. Being a teen mom and living in some of the worst conditions growing up did not give me the best odds for success. But here I am. Through many challenges and struggles I achieved a level of success I never imagined. With back to back challenges I found faith. I also found the courage to fight hard. Fight towards survival of a better life. I survived and I was able to overcome some of the worst things imaginable.

I saw was able to see the light at the end of the tunnel and much happiness and peace was found. 

But now I am faced with yet another unexpected, life altering challenge. This I consider one of the toughest and hardest difficulties I have had to encounter thus far.

Something I did not ask for, nor something I planed for. I am now facing a deadly disease that now haunts my family, Huntington’s disease. “It has been called the cruelest disease known to man.” I would have to agree. Seeing the day to day struggles of this disease has been heartbreaking. Seeing my mother deteriorate before my eyes is painful. Now seeing my older sister has the same fate has troubled me. But I have HOPE. Hope for a cure. Hope for a better tomorrow. Hope that I can be a voice for my mother, my sisters and all those affected by this horrific disease.

I hope to share my life story. The battles I have to face day in and day out with this awful, deadly disease. With hope, I fight in faith, follow my story…