HD Awareness Month: Lisa's story

Hi readers,

Thank you so much for following my journey as I share my struggle Huntington's Disease.

This what started out as a little blog, has now raised SO much awareness and donating for a cure.

I am smitten with the emails, the comments, and the views I have received, and blog world. My blog has become a safe place for me to share my heart  and story with the world. I am so grateful for YOU, and your encouragement.

I have made some new friends in the blog world, and one of them is Lisa. Lisa is also part of the HD community, and I am so grateful that we found each other. She understands my story. Lisa has been brave and willing to share her story with you, in order to raise awareness of Huntington's Disease.


Here is Lisa's story:

I really want to get more involved with Huntington’s and promoting awareness. I think for so long I have tried to ignore it. Mostly because people don’t understand how it works. No matter what I tell them. They always say things like don’t worry you probably won’t get it. Not knowing that everyday it’s on my mind. Every time my leg twitches or I mispronounce a word or do anything clumsy! It is a scary feeling knowing that there’s no cure just deterioration.

My story is rather long and not too exciting, but I am going to type away. I don’t remember much from my childhood before age 9. A therapist told me it may be a mental block to cover up my pain. I dont know.  My parents had me in ca and divorced when I was two. At that time my mother took me and moved back to Pa. Where all of her family lives. She did drugs before me and after I was born.  Mostly marijuana and speed.   I remember most days I played alone while she slept all day. When she was around she always had these weird jerks and motions (HD symptom). At the time everyone would say it’s because your mom does drugs. I never actually saw her do them, but everyone put the image in my head. So I lived with her until about 7. Then my aunts started taking me on weekends and more frequently. My mom was becoming "sick" and no one knew why. Again, blaming drugs.

So my aunts told me I would need to live with them. I would see my mom occasionally, but no one ever really explained what was wrong with her. After hearing that drugs did this I began to resent her. I would visit her from time to time in a hospital. At some point she contacted my father in ca and told him she was sick and to get me, that my aunts had been raising me. (Mind you he hasn’t seen me once since I was two). My dad immediately goes to court and gets custody of me and within a month I live with my dad.

I hated living with my dad. I was 9 and had no connection to him. He had a wife and three kids.  Imagine adjusting to that…My aunts and my mom were 3000 miles away. I cried every night that I wanted to go home, but it wasn’t happening.  I stayed in contact with my aunts and they would try to talk to me about my mom, but I didn’t want to know. I was so mad I had to be in California and felt like if she hadn’t done drugs, she wouldn’t be sick and id be with her.

It was around high school (1997) that my aunts started really trying to talk to me about my mom. Telling me she’s getting sicker and I need to see her.  They also taught me about Huntington’s and how I was at risk.  I didn’t want to hear it. I was 17-18 and thought I knew everything. After I graduated high school I moved to Washington with my boyfriend.

In the summer of 1998. My aunts called me to update me about my mom. I knew she had Huntington’s disease, but still didn’t want to talk much about it. I guess I was scared and hurt. They told me my mom was getting really thin and has a hard time swallowing and she jerks a lot. I remember my cousin telling me she saw my mom and the hospital and that she kept saying Lisa. It broke everyone’s heart to see her this way.  I said I would get out there soon.

Soon wasn’t soon enough!!  On September 20th I came home from work to a full voice mail. My aunt was calling and it was really important that I call her back. She left like 3 messages. I knew something wasn’t right. I called her in PA that night after listening to the messages. She told me my mom passed away the night before. I threw the phone. I was so UPSET. I think my mom had choked In her sleep and eventually went into cardiac arrest.

I went to my mom’s funeral which was open casket so I could see what she looked like. I sat with her after everyone was done saying their part and I just cried and stared at her. So many thoughts in my head.  Why her??  Why didn’t I get to say goodbye?

A couple years passed and I decided to learn more about the disease. I educated myself enough to decide whether or not I want to be tested.  I have also learned that it wasn’t drugs my mom was sick from, it was this stupid disease. :( I wish I would’ve listened and visited her. I hate myself for being mad, when it wasn’t her fault.

So many people have said that if my mom hadn’t done the drugs she did the HD may not have kicked in so early. Regardless it was her time to be in heaven.  It just hurts that I don’t have my mom.

My mind often wonders which one of my grandparents had HD to pass it on to my mom. Sometimes I think it’s a misdiagnosis. Today I am at a point in my life where I realize life is too short and I may start having symptoms. I want to live my life to the fullest and educate anyone I can. I also want to raise money, so maybe one day there will be a cure. I have a beautiful son and he is my everything.  I need to show him how great life is, while we are here together.

Please join us for the walk or the 5k run.  If you can donate it would be appreciated more then you know!  We need to find a cure!!

Thanks for listening. ♥ lisa

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As always, thank you for reading,

Alex