a huntington's disease warrior dream trip

Hello all, I am Melissa. In March 2023 I was diagnosed with Huntingtons Disease. Huntington’s Disease is a genetic fatal brain disease. There is NO cure or treatment for Huntington’s Disease. Of course this disease is terrifying and my time-line is unknown. So my husband and I have went on a whim and left our jobs to travel the world for 3 months. We will be in europe for 6 weeks and then we will road trip around the entire USA for the next 6 weeks.

We are doing this now for me and my diagnosis. We want to spend these good days celebrating my life in the best places while I am still able to move by myself and to completely able to fully enjoy the experience. Instead of waiting until the end of my disease. When the experience would be less enjoyable and require more care. This whim is almost as scary as the disease itself. We don't have a large amount of savings and I have already pulled out my entire retirement for the trip. It is nerve-racking to be out of work for 3 months and we all know that reality doesn't stop. It would be an amazing feeling to be able to leave the stress behind on our adventure.

This is my huntington's disease testimony:

This past month has been the most difficult month of my life. As much as I wanted answers this is not how i thought things would play out. huntington's disease is a genetic fatal brain disease that I have been diagnosed with. For the last 3 years I have been facing the biggest battle with the neurologist and my body.

I spent 2 years with my first neurologist and he couldn't figure anything out. After, 2 years they finally referred me to University of Colorado Anschutz Medical Campus. Where at my very first appointment 2 separate neurologist ran the same tests separately and compared notes. At that moment I was diagnosed with Chorea. What the heck is Chorea?! My thoughts exactly. My neurologist explained Chorea is typically the first steps of huntington's disease, then the neurologist explained huntington's disease completely to me. Talk about a devastating drive home. At the end of my appointment my neurologist ordered what felt like a million blood tests and an MRI. I returned to the University and the neurologist ran more tests and decided this was definitely Chorea.They explained again that it could be the first step of huntington's disease and suggested the genetic test. Afterwards, the genetic counselor pulled us aside and asked questions about my family. Then she explained genetic testing is the only way to have a 100% true answer if i have huntington's disease or not. She said that the blood test is optional completely up to us. And explained how devastating and emotional it can be depending on the results. After much back and forth debating.

I chose to opt in for the genetic testing because I was certain that the neurologist was wrong there is no way that I could have a fatal brain disease. I was approaching the situation with 100% optimistism and confidence.I am a young, healthy 31 year old, it definitely does not run in my family etc. On March 7th, Tristian and I drove to University of Colorado Anschutz to see my neurologist to get the results of the genetic test. On the drive down we commented that, "we were hoping to have a happy drive home for once." My 2 neurologist and the social worker walk in the room, he said, "Do you want to know the results it is completely up to us. We said, "yes" and that was the moment I was diagnosed with huntington's disease. I remember crying, confusion and devastation... and eventually anger.

It had been a long time coming. Have any of you ever been unable to walk, walk straight, falling over, and losing weight? I even faced a lot of issues during my first year of teaching. It was during covid because of my "drunk movement" (now called chorea) and no one could smell my breath because of the mask mandate. I recall sitting down with the assistant principal trying to explain myself. Have you ever been kicked out a bar or been cut off after one drink even in several different states? What about being denied life insurance from 3 different companies? Have you ever felt so weak to drive and you have somewhere to be and you just pull over and cry, or even just putting on your jeans or leggings and realizing they are huge? These are the things that I face almost everyday. These are the things that absolutely devastate me and make me cry most days. But, for every uncontrollable tear I have shed. I try to find one thing to make me smile. As, selfish as is it is for me to say. I wish so bad this was cancer because at least I would have a fighting chance. I am trying my hardest to get into a huntington's disease clinical trial.

I hope none of you have had this experience. But this is my experience and these symptoms are real not exaggerated and this terrifying fatal brain disease is real. The scariest part for me is that there is no time-line or manual. There is no direction or a start date. No persons experience with huntington's is similar. This has been my life the last 2.5 years. I am not complaining I have an amazing life and everyday has it's difficulties but every person has difficult days also. I cant promise what the future holds, but right now I am going to celebrate everyday because I am alive, I am able, I am strong and I am motivated!!

This is my story If I can pass on hope and knowledge to even just one person I have done my job.