Huntington's Disease SUCKS

Blog Post created by tibbetsethan on Sep 28, 2020

As most of you know by now from my last post, my mom passed away yesterday from Huntington's Disease.

Huntington's Disease is the same disease that took my Grandpa, my two Aunts, and now my Mom. One of my aunts has it as well and one of the Uncles is suspected to have it too. Then out of the kids, myself and my cousin most definitely have it except my cousin has chosen not to get tested. My brother also refuses to get tested. Most of us kids live in fear of the Disease whether we will have it or get it, many of us have chosen not to get tested because of the knowledge of exactly how bad the disease is. 


I was diagnosed at 21 with the gene and early the next year (still 21) I was diagnosed with the actual disease due to muscle spasms and twitching. I am 27 years old now and on walking assistance, have several mental problems that we are trying to manage with medication including Schizoaffective disorder, Anxiety Disorder, and Major Depressive Disorder. I have lived with mental problems since I was 14 so they have officially diagnosed me with JHD but are still technically on the fence about it because they really don't quite know "when" I first became symptomatic, it was sometime between 10-14. The average lifespan for someone with Huntington's Disease is 10-15 years from onset of symptoms, which would put me 13 years into the disease (if) it was onset at 14 years old. 


I want to mention that NO ONE can put a TIMESTAMP or EXPIRATION DATE on your foot. But that is the general consensus of how long people with HD last. I have declined drastically in the past year, especially in the last two years and live in fear every day that it won't be too long before I am like my mom... I fiercely try to keep up hope and try to keep strong, but as my body has started to fail me some, it's gotten more disheartening.


The pain I go through is pretty severe, especially down my neck and spine. I have muscle spasms all the time and wake up in severe pain every night multiple times. I am trying different routes with pain management right now. 


My mom originally started complaining of her back when she was about 27-30 I can't really remember, and it got so severe she had to quit working and lay in bed all the time, which people just labeled as "oh she's just lazy and doesn't want to work" I can honestly say I am pretty sure that wasn't the case at all since I'm going through that too. She was on Fentanyl patches (I guess she had a good doctor or a very bad doctor lol, whichever you want to say depending on the pain you've been in haha). I am only thankfully on Baclofen, Meloxicam, and Gabapentin and was trying to use CBD oil to help but the CBD oil ended up making me sick at my stomach and made my headaches worse. 


My mom and I are not the only ones to suffer though, my Aunts lost their minds first just like my Mother, a lot like SOME dementia patients can where they have severe delusions, where they don't know hardly what's going on or have any tangible connection to reality at times. My Great Grandma and Great Grandpa had Alzheimer's and Dementia in general, so that's the only thing I can compare it even remotely to. It's not so much that they go "crazy" but just very delusional and detached from reality, forgetful when it comes to "losing their minds" One of my aunts ended up in a mental hospital, diagnosed Schizophrenic and later Dementia and at death Huntington's Disease (strange how that works right?) until she died in 2015. My aunt Connie was cared for by her daughters until her death 3 months ago in hospice from brain injury and blood clots that went to her brain and heart from being in bed for so long. At the time she was unable to move or know anything due to Huntington's Disease.


My Aunt Cathy also suffers from and goes to the same Neurologist as I do but I haven't talked to her in months. Apparently all our CAG counts have been 43 or around that. She is around 45 and was not in the best shape mentally last time we talked.


My uncle Jimmy is also suspected but we are unsure on that as he has self-medicated quite a bit.


Out of us kids, my cousin Nate is 30 and he falls a lot, he's very clumsy and hurts a lot. He doesn't want to get tested because he is very scared due to watching his mom be sick. There are quite a few of us kids, over 15 of us actually who are now at risk or have it. 


I will tell you Huntington's is not a pretty disease and it has taken almost everything from me, my brother, and my cousins. It's taken the lives of our family, it's ruined marriages, it's awful. From start to end, it's nothing but pain, heartache, and no one should have to go through what the disease does.


I will leave you to do your own research on what Huntington's Disease does and is, but this post is in memory of the fight that my mom, my aunts, my Grandpa and everyone else out there who is dealing with this disease, around 30k people have it in the USA and 200k+ are at risk to develop the disease due to genetic inheritance and the VERY rare genetic mutation. 


I believe fully that this disease will be cured someday and that mine and my family's pain will not be in vain, in the mean time. No smoking, no vaping. It's going to be okay. All we can do is live day to day and keep up hope and faith.


Thank you all for the support and love you guys have shown since I've been here and I'm sorry if I'm not on as much over the next few days, I have doctor visits and have to make plans for my mom and stuff with my family. I will try to update as much as possible.


God Bless 

- Ethan 4 DOF 


Oh yeah, I had missed things by a day, sorry, my brain isn't exactly at it's best point right now or the past few days, I only have 4 days but will have 5 days tomorrow. My date is 9/24/2020.