Huntington Disease Warrior

Good Morning, My Boys.

Good Morning Boys,

I just woke up and figured I should type while I’m still fresh. At this point in the disease, my cognitive and motor skills have started to decline. You both know I’m a stickler on proper spelling and run on sentences. I now do both. lol I apologize for my many typos.

I thought about last night what I may miss with you both, as time progresses. I may miss the first time you fall in love, go off to college, and other important events. I just want you to know that I’m with you in spirit always. I also want to offer my advice for you both as you will be getting access to this blog when you both are young adults.

So here goes my two cents. Treat all women with respect. I don’t care if it’s your grandma or a girl that you’re seeing. Enough said. Respect yourselves. Easier said than done, I promise. I know you both are going to experiment with alcohol. If you ever get wasted (of age, I hope) or at a party, please just call your Dad’s or your Stepdad. That’s all I ask. T, your Dad, Stepdad, and I all have a pact that when you need help and ask then we will be there right away without judgement. Moving on, always put God, family, school, and work first. T, I know you struggle with this and I get it, but I pray everyday that you do regain your faith again. God. is what has given me the strength to continue to fight this disease. Family, is crucial. Always, always, always, remain in contact with your brother. You two were raised together and will be each other’s best friend. When it feels like the world is beating you up, family will be there. School, is so important. You both will be the first from your parents to go to school. I’m so proud of that! Continue to make this a priority as it is very important. Everything is changing and now jobs like to see Masters degree. The workforce is becoming highly competitive. Lastly, your job. I don’t care if you’re an engineer or working at Mcdonalds. You always give 100%. Your work ethic is very important and says a lot about your character. You’re both highly intelligent young men and understand your character is very important. Character, either makes you a man or doesn’t. Make sure you have a good one.

Ok, so I ranted enough for today. I’m going to exercise with your Bebe. The Dr. said it helps with the symptoms of the disease. So gotta go work on my fitness, kiddos. I love you both to the moon and back.

Love Always,

Mommy

My New Life with Huntington Disease!

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). I’m taking a ton of medicines which between them and the disease, I’m just exhausted. I used to work out with one goal in mind. To be thin, toned, and burn the most calories possible. I’ve actually gained 15 pounds with my new medicines. The old me would’ve 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 I’m 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 haven’t been able to talk to God about my disease nor for myself in general. I have still been saying prayers for others, but couldn’t dare speak to him yet about this. Until today. I asked my Mom (who’s my numero uno) to come with me. She held my hand while the songs played. Then the sermon began. I’ll be damned if it’s 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. I’m 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, I’m 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, he’s been here in the background all along. My Momma (sorry, I’m southern), said to me that there’s 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. I’m 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 don’t even matter. I’m finally at the stage of acceptance. I’m at peace. I maybe slower, more tired, and bigger, but those things don’t define me nor does my Huntingtons! I am just a newer version of me and that’s all I can be! Everyone have a wonderful Funday Sunday!

Dear Boys, Always Have a Kind Heart!

Hello Dears,

It’s early and T, I just sent you off to school. I’m very tired today. I had two naps yesterday and still feel like I need more rest. Damn Huntingtons. T, you told your grandma last night that you know how she felt when she lost her Mom in her mid 20’s. That broke my heart. I’m not really sure how to even address this with you, as you’ve been pushing me away. Now, I know why. I know you’re a teenager, but I also know now that you’re scared. That is why I wanted you both to have this for when I’m unable to communicate or something happens to me. Please know my sweet baby, that I will be with you at all times. Whether, it be in this world or in your heart. I love you and I wish I could take your pain away!

Boys, today I wanted to explain to you the importance of having a soft heart. Do not let this big, scary, and at times cruel world harden your heart. There will be times when bad things happen and we simply don’t understand why. It is easier sometimes to not do the right thing in life or to just give up. However, you boys come from a strong blood line of fighters. Please remember that. Bebe, beat cancer and has excelled although she’s blind. We as a family unit have beat the odds. T, we made it even though I had you at 15. T and J, I left an abusive relationship after almost 8 years so that you would no longer be around that type of life. I didn’t want you both to think this was the norm and that this was how you treated women. J, you may never know how bad it was and I thank God for that! T, I’m so sorry you were ever subjected to that. I’ve made many mistakes in life, but I’ve never given up. Neither, will you two. I don’t care how much adversity you both face, please continue to be good people. Wonderful men whom are productive in society. Please always do the right thing. I know it’s often the easy way out to do what is wrong. Don’t allow the world to let you think this way. There is karma and it always catches up to you. Be kind people. Do not ever become jaded. Help the community and always thank God for your the good in your life. Again, I repeat please don’t ever allow anything or anyone to change the good in you. Always, keep the soft and kind hearts you both have. You’re amazing people and can do so much good in the world. You’re both my everything. I love you with every bone in my body. I’ll talk to you tomorrow.

Love Always,

Mommy

Always Be Kind!

I 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 they’re 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, I’m learning this is a tight knit group and you don’t 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 I’m not sure how my self esteem would take this hit.

I know with my progression, I look quite normal if you don’t 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 couldn’t 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 life’s many woes. We may not see it on the person’s outward appearance, but they maybe struggling.

Moral of the story is, be kind to everyone for one doesn’t know what they’re going through…

I have been Diagnosed with Huntington Disease.

Hi, I’m 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. didn’t know what it was or b. would look at me with such sadness. As if, I didn’t 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 don’t 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 didn’t 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 Huntington’s. We are still deciding as a family if we should go forward with the testing next week. I will explain the difference between Juvenile Huntington’s and Adult Huntington’s 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, wasn’t 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 Huntingon’s. 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 Huntington’s and I go back next week to meet with my actual Neurologist. So it hasn’t been said what my prognosis is, but it goes without saying. I’m a realist and I know that essentially I’m 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 I’m doing just that. I’m working out everyday, taking meds, and getting into the new norm for my body and disease. Where, I’m a realist, I’m also very positive. The dr and I said the goal is just to stay in stage two as long as possible. That’s a real goal that I will work towards by any means. I’m 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, it’s inevitable that I will die from this disease, I will go out kicking it’s ass! Sorry, to write so much. My other posts will be much shorter, I promise! Feel free to ask and questions!

Help Adrienne Battle Huntington Disease!

Help Adrienne Battle Huntington Disease!

My name is Adrienne Lovett and I am battling Huntington Disease. The disease consists of Dementia, Parkinson, and Als. I’m on permanent disability, due to the nature of the disease being terminal. Due to the rarity of the disease, as it is rare and currently no cure or medicine for the disease and extreme of the expenses that come with such an extreme diagnosis. I am looking to raise money to help me pay for medical equipment, medical bills (which is currently 20,000), medication, and other expenses such as living expenses. My husband works and is also my caregiver. I’m being referred for palliative care at the present moment.

Any donation such as, food, medical equipment, money towards living expenses would be such a blessing to our family. We barely are getting by with my ssa and his job salary. We are currently behind on all bills and constantly overdraft. I have been denied long term insurance and life insurance. .
I’m writing to ask you to support me and my family whom are barely getting by and will have so many expenses now and going forward. I am currently using a walker due to my muscles deteriorating . Before, I was finally granted ssa after years of denial (even though it’s on the compassionate allowance list) My husband worked two job at 80 hours a week just so we wouldn't lose our home. He doesn’t know I’m doing this, as he is a very proud man and doesn’t believe in asking for help. I don’t want him to have to go back to working two jobs, as he recently suggested. Just a small donation of any kind can help me and my family with the transition and progression of my disease.

Your donation will go toward accessibility equipment, medical bills, living expenses, food, medical equipment, and making our home disable friendly.

I know you probably get these request all the time, but I’m including a link to more information about my disease and just grateful if anything for awareness and your time,
Thank you in advance for your contribution. You have no idea how much it means to me to have your support.
Here are the ways you can make a donation:

https://www.gofundme.com/huntingtondiseasewarrioradrienne
— Send a check, food donation, or medical equipment to the address at the top
— I also would be so grateful for gift cards to grocery stores or the likes and also have a medical equipment wishlist on Amazon.
Thank you again!
Sincerely,
Adrienne Lovett (sorry unable to sign, due to muscle deterioration)

Live your Best Life

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 wasn’t expecting it. I was at the hospital for sinus tachycardia. The doctor asked my family history. I told him my father had died from Huntington’s 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 I’m 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. I’m only 31. Well, apparently this disease doesn’t 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. I’m 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 5–10 years to live. I’m going to accept my fate and enjoy life with my loved ones. I’m not going to stay in despair. I’m 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 isn’t over. Maybe, it’s truly now beginning. I’m on a mission and have a Bucketlist to make.