The Huntingtons Mom

The Huntingtons MomFollow me through my journey of the good, bad, and ugly of Huntingtons Disease.Http://Huntingtonsmom.com

What is Huntingtons Disease?

I Have Been Diagnosed With Huntingtons Disease.Hi, Im a 31 Mother of two that lives in Nashville, TN. I went into the Hospital for inappropriate sinus tachycardia and left completing a DNA test for the same disease my Father passed away from. I got the results from the test two weeks ago on this coming Monday. I was staged and signed up for research this past Wednesday. My whole life and plan has changed. I was just recently married to my high school sweetheart in April. We went from discussing future vacations to whom will be my Power of Attorney. I decided to document everything from now until my memory allows me to no longer do so. I want to educate others on my rare, genetic, and deadly disease. When I would tell people the disease my Father had, they a. didnt know what it was or b. would look at me with such sadness. As if, I didnt know that I could soon have this same fate. It is a combo of ASL, Parkinson's, and Dementia. Only 35,000 are diagnosed in the US, but over 200,000 at risk of getting. One person can affect 20 in their blood line. Unfortunately, due to my Dad being adopted and there being no medical records, we dont know where it began. Bless his heart, he was misdiagnosed as bipolar for many years until his chorea (shaking and jerking) began. We had no idea of his diagnosis until after my first son was born. I did know after my second son was born and I was in my early twenties. They didnt have the embryo implantation genetic testing at that time and they knew my family history not saying anything further. I feel extreme guilt knowing that my two boys are now at risk. My oldest who is sixteen is already displaying chorea and they believe he may actually have juvenile Huntingtons. We are still deciding as a family if we should go forward with the testing next week. I will explain the difference between Juvenile Huntingtons and Adult Huntingtons on another blog. The onset is different and progression is, as well. We have been misdiagnosed for many years. Typical onset for an adult is slight mood and depression changes for up to ten years before diagnosis. Typically, getting much worst a year before genetic testing and suicidal is also highest due to the changes in the brain at this time. I have had every disease known to man according to many different doctors and on every antidepressant known to man for the depression and mod changes. How I knew I had it, wasnt the fine tremors, because I also had an overactive thyroid for many years. But the depression and mood changes changed who I was. I had always been very successful being an Account Executive for eight years at a huge technology company and was also very happy as a whole. I had always had a small amount of seasonal depression, but I could shake it off with a nap and never needed medication. I quit my job in April due to being too depressed to manage and my moods were all over the place. I knew something had to give. I decided I had to figure out what this was before I let it take over my life. While, I had another episode with my heart rate being 170, the hospital did a nerve test. I googled it and saw that it was related to Parkinson's and Huntingons. My heart dropped. I knew that my memory had been hugely declining, shaking, and other cognitive functions were also declining. I knew then, even before I called the case manager I had it. I called and thankfully the hospital I was at was a Center of Excellence. The Case Manager and Neurologist on call had me tested and the rest is history. It seems so long ago, but only three weeks actually. Writing and sharing is actually therapeutic for me. I had my first apt to enroll in research this week. While there, the amazing Director did his exam I was placed in stage two. Which is early stages, by their standards. Where the cognitive and motor skills are starting to decline. I am on a cocktail for my Huntingtons and I go back next week to meet with my actual Neurologist. So it hasnt been said what my prognosis is, but it goes without saying. Im a realist and I know that essentially Im dying. There is no cure and nothing to slow down the process. I have hopefully tenish years. I was told that I should do Physical Therapy to help with the shaking and that thirty minutes a day to exercise. It adds years to the disease. So Im doing just that. Im working out everyday, taking meds, and getting into the new norm for my body and disease. Where, Im a realist, Im also very positive. The dr and I said the goal is just to stay in stage two as long as possible. Thats a real goal that I will work towards by any means. Im no longer able to work, probably not going to drive after my next apt, and take it much easier on my new body. The great news is that I van volunteer at the Hospital. Which, as corny as it sounds gives purpose.My family, friends, and making new memories are what matter now.Everyday is a brand new day. While, its inevitable that I will die from this disease, I will go out kicking its ass! Sorry, to write so much. My other posts will be much shorter, I promise! Feel free to ask and questions!

My New Life with Huntingtons.I wanted to write while I was having a good day and felt up to it. My new life consists of lots of naps (took three yesterday), working out (at a very slow pace), and making peace with God (which has been a hard battle). Im taking a ton of medicines which between them and the disease, Im just exhausted. I used to work out with one goal in mind. To be thin, toned, and burn the most calories possible. Ive actually gained 15 pounds with my new medicines. The old me wouldve died, but it just seems so trivial now. Now, I work out at a very slow speed and burning hardly any calories with one very important purpose. To live. My Dr. told me 30 minutes a day could possibly help my disease and maybe give me a few extra years. The peace with God and Im sorry if I offend anyone or their spirituality, has been the hardest for me. I actually went to church last week and left during the first song. The lyrics hit me and I realized I was upset with God. So I left. I havent been able to talk to God about my disease nor for myself in general. I have still been saying prayers for others, but couldnt dare speak to him yet about this. Until today. I asked my Mom (whos my numero uno) to come with me. She held my hand while the songs played. Then the sermon began. Ill be damned if its not about Joseph and how he was sold to be a slave. How he still had faith during adversity. Right there, I broke down and started to pray about my disease and how it was affecting me and my whole family. I was in tears. The ugly type of cry too. Im not the type to go in front of a congregation and ask for prayers. Something came over me and with my Momma in hand, I walked up to the preacher and he prayed for us. Yes, Im upset and pissed that now not just myself is affected, but also my first born baby. However, I know now that although I have pushed God away, hes been here in the background all along. My Momma (sorry, Im southern), said to me that theres noway that I could find the strength to fight this if I had been all alone. God is a big God and can take a lot. He knew I just needed time and space to think this through. Btw. This was only my second time being at this church and I really enjoyed it. I may even join. So two good things happened today. Im back on track with my faith and I may have found a church to call home. All of the other things that I have been worried about, such as my shaking, typos, and jerking dont even matter. Im finally at the stage of acceptance. Im at peace. I maybe slower, more tired, and bigger, but those things dont define me nor does my Huntingtons! I am just a newer version of me and thats all I can be! Everyone have a wonderful Funday Sunday!

Dear Kiddos, Mommy is Sick.Dear Loves of my Life,I was diagnosed officially and unfortunately with the same genetic disease my Daddy had. We found out on this past Wednesday that I was in stage 2. It pains me to tell you this for 2 reasons. You both have the same odds of getting this that I had now. Which is 50/50. The second reason is, its likely that I will miss so much in your life. I feel extreme guilt. You both will never know. My life has always been you boys. I live and breathe for you both. I know Mommy has been different this past year and a half, but the Dr. said that was the disease working on my brain. They said it affects your brain up to 10 years prior to the actual testing. I dont want to discuss statistics and medical talk. My goal with this blog is to let you know everyday until my brain and body no longer allows how much youre loved.My first born, how can I begin to tell you how much I absolutely adore you. I had you so young and i feel like we have grown up together. Youre so brilliantly smart. I always say to people that it doesnt come from me. We know you mustve got from my Dad or your Dads side. lol Can I tell you how much I admire your strength and unwillingness to compromise who you are. You stand up for whats right, non-judgmental, and know where you stand at all times. I didnt have a clue who I was until I turned 29. Youre hilarious and at times inappropriate. But I wouldnt have you any other way. Im in awe of your conviction everyday. Youre my best friend and dont you ever forget it. Even though youre now 16 and hate being around me. lol I love you beyond words.To the baby of the family, I melt whenever youre around. Im like putty in your hands. One day you will know when this custody battle is all done, that I never left you. Thats a discussion for another day. Please just never forget that the time weve had apart has destroyed my heart and I havent been the same. I have fought tooth and nail for you. Truth is, its a David and Goliath fight and unfortunately Im on the losing end. Youre my baby, my heart, and both you and your brother are the reasons I breathe. I had you much older then when I had your brother. It was a different type of relationship. I had grown and morphed into a different parent. Everyone grows with time and age. You were my ace, my twin, and we were connected by the hip. Just remember when youre older and read this is that everything isnt what it seems. Also, remember that youre flesh of my flesh. Your smile is mine, as well as those beautiful bright eyes. Dont ever let anyone try to change your quirky personality. My dear sweet son, youre wonderful and beautiful just as you are. I love you more that life itself.Im sure I have bored you both to tears. I love you both very much. I will post again tomorrow.Love Always,Mommy

Always Be KindI read on Facebook a story about a gentleman who attempted to get into a bar and grille in London. The gentleman was in a later stage of Huntingtons than I am. He already had the drunken and gated walk. That is one stage after mine. Apparently, in Europe theyre given a Huntingtons Disease card in the event that they have a health complication or having to deal with police who think he maybe drunk. Well, this terrible establishment denied this young man entrance. They said he appeared overly intoxicated and proceeded to make fun of him. Even though he provided his Huntingtons card.His friends were appalled and shared the story to the Huntingtons group on Facebook. One, Im learning this is a tight knit group and you dont mess with us. lol Two, what a terrible feeling to not only be denied a night out with friends because of your disease, but to also be taunted is horrible. This could be in a couple of years and Im not sure how my self esteem would take this hit.I know with my progression, I look quite normal if you dont see my hands or feet trembling. However, my memory, cognitive, and motor skills have all been affected. Recently, a clerk was very rude to me because I couldnt remember if I paid him or not. I literally left in tears and called my husband vowing to never go back. Until, I remembered to be kind. That the rude clerk may be experiencing not only a bad day, but maybe trauma as well. We all have something going on in our lives. Whether it be illness, family issues, or lifes many woes. We may not see it on the persons outward appearance, but they maybe struggling.Moral of the story is, be kind to everyone for one doesnt know what theyre going through

Life and Acceptance.Have you ever heard of the 5 stages of grieving? They are denial, anger, bargaining, depression, and acceptance? I have gone through all stages multiple times since recently being diagnosed with Huntingtons disease. Life catches you off guard at the most inconvenient time. I have also been in a year long nasty custody battle. I thought for sure that nothing could get worst than that and then came the diagnosis. I wasnt expecting it. I was at the hospital for sinus tachycardia. The doctor asked my family history. I told him my father had died from Huntingtons complications. The Dr. then did an exam and he mentioned my fine tremors and other neurological symptoms that I had never paid any mind to. He seemed very concerned. I was then immediately tested for the gene and off they sent me. Let me tell you waiting for the results was the hardest thing I have ever had to do. Now thinking well what about my kids? This is genetic and if Im positive for the gene than they could have a 50/50 chance of getting it. Also, I tried to tell myself that I was too young for this. My dad was 50 when he was diagnosed. Im only 31. Well, apparently this disease doesnt care your sex or age. I did have it. I had a cag repeat of 43 and i was placed in stage 2 a month later. Im not able to drive or work a traditional job anymore due to the progression and quick onset. I knew for a while i was sick, but never knew what it was. I have been mad, I have cried, I have even had major depression due to this terminal diagnosis. However, yesterday it hit me that I still have 510 years to live. Im going to accept my fate and enjoy life with my loved ones. Im not going to stay in despair. Im involved in research and would love to become an advocate for the disease. I have accepted that is now my life and I choose to make the best out of it. I will write, blog, and would love to do a documentary on Huntingtons. My life isnt over. Maybe, its truly now beginning. Im on a mission and have a Bucketlist to make.The Huntingtons Disease Society has been an amazing resource and help so many. To learn more or to help the cause please go to:https://interland3.donorperfect.net/weblink/weblink.aspx?name=E5596&id=1Share this:Click to share on Twitter (Opens in new window)2Click to share on Facebook (Opens in new window)2Click to share on Google+ (Opens in new window)Sunday FundayOctober 16, 2016In "Family"Always Be Kind.October 16, 2016In "Family"Dear Kiddos, Mommy is Sick.October 14, 2016In "Family"POSTED INFAMILY,HEALTH,HUNTINGTONS DISEASE,MEN,MENTAL HEALTH,UNCATEGORIZED,WOMENCHILDRENFAMILYHEALTHLIFELIFESTYLE. HUNTINGTONSDISEASEMENMENTALHEALTHPOSITIVEVIBESWOMEN