I love writing and telling about my story more than anything. It may not seem that way since my posts are so sporadic, BUT I’ve been trying to find my place back out in society and get back on my feet after my mom’s passing. We are almost 6 months in to her being gone, and things are just starting to feel a little bit normal again.
If there is one thing that I have learned in a half year it is to never give up and push on. There were plenty of days where I did not want to do anything. I did not want to be seen, or heard or move. What I’ve learned is that it’s normal to feel that way. I have realized that if I just sit there and do nothing, give up and dwell on the fact that I physically do not have my mom…I will accomplish nothing and I will never meet any of my goals. Of course there are days where I am sitting around and get bad or depressing thoughts, but I have taught myself to relax in those moments, talk to myself and breathe. It’s the simple things that are getting me by. So here is my guide on how to get through this and never give up:
Friends. It does not matter whether you have five, ten, or even just one really good friend. Make sure that you are not spending all of your time alone. Occupy yourself, go out when you can and you feel good enough to. Also, talk to them!!!! There’s nothing better than having someone you can vent to no matter what. Remember, not all your friends have to be people you know personally/live near. THAT’S WHAT THE HD COMMUNITY IS HERE FOR!! Talk to people through the Facebook groups. (I find the best support in people I have met at the HD camps/convention!)
Family. They are going through this fight with you. Don’t be afraid to talk to them when you are upset, scared, realizing changes or just need someone to listen. I talk to my dad all the time. I text him when I need(I don’t live with him), he’s my shoulder to cry on when I’m home, and just the person I turn to when I need a good laugh. Just don’t hold everything in, be honest with them and yourself.
Research. I know for some knowing everything about Huntington’s Disease can be scary and you’d rather just know what you know and call it a day, but honestly researching and understanding more about the disease helped me out so much. (Make sure the stuff you read is credible though, one that is:****HDBuzz***** check it out!) Hearing all the good news about gene silencing trials, Enroll HD, Conventions, Camps…it all makes a difference and good news is always great, right?!
Do Not Stop Living Your Life. I thought that when my mom passed I would never be the same, never be able to move on in life, but you know what? You have to. It’s cliche, but that is not what your loved one would want for you whatsoever. So, keep doing what you were doing before they passed, before they got diagnosed, before they had a bad fall, before they got Hospice or admitted to a home. Take time that you need to heal, but never stop living your life. Live for the now, and know that you are making your loved one proud, and you should be making yourself proud to. You can do it. I didn’t think I could, but I am.
My fight is not over yet. I cannot say that I am one hundred percent healed and accepting of what had happened. But in March I was at zero percent, and now I’d say I’m at fifty percent. Happiness, acceptance and healing does not happen over night. Let your mind and body have that time to reflect and heal.
Never give up, XOXO
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AtRisk4HD 
This was an excellent post full of good advice. I had a question for you about the friends thing.
I recently got back in touch with an old friend and discovered that he’s had HD for ten years. He’s in amazing shape for having it that long, but you know, how good can you really be after ten years?
He’s been isolated all these years. Once he was diagnosed, he decided to hide in his brothers basement. When I met up with him the first time, he could barely speak because he wasn’t used to having conversations. After a day or two, he was speaking clearly and responding much faster. So it wasn’t HD, it was loneliness.
His brother barely speaks to him, and he has one friend out of state who calls once a month, but that’s it.
Anyway, my daughter has been in school and I haven’t gotten a job yet. So I’ve been hanging out with with him every day. We go for coffee, lunch and watch Netflix in his basement. It’s been really fun.
I was texting him the other night and everything was going fine. But as soon as I mentioned I was taking a part time job, he told me that he never wanted to see or hear from me ever again. He said he never enjoyed hanging out but he felt sorry for me.
I know it’s almost certainly not true. I’m fairly certain he regrets saying it. But I don’t want to “stalk” him and demand that he change his mind every few days or so.
I think he was worried that I’ll stop hanging out with him after I start work. But I deliberately worked out my schedule so I’d have time to see him for a few hours every day. I enjoy his company. It’s not a pity thing. I just want to spend time with him.
Anyway, sorry this is so long. I just want to know what someone with HD and have had family members with it would want.
I found so much advice about how people with HD should react to getting rejected by friends, but no advice about how friends should act when em they reject you.
Thanks for reading this long message.
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I apologize for such a late response! BUT, my advice to you give him the space he needs for the time being. He is most definitely going through a lot and it could be that he is going through and experiencing changes in himself that he does mot want others to catch onto. My mother was embarrassed of herself and the things she did, they have little to no control. Also, with HD they do tend to lash out sometimes and push people away. Not on purpose but because they feel like a burden and they do not want to rely on people for everything. It is a huge pride issue, my mom had this too. But I say he needs time. I know it may seem like he has had enough time since you have not seen/heard from him in such a long time before you reconnected, but it is a tough disease to swallow, it takes a lot out of a person mentally and emotionally. I definitely think after some time you should check in, and see if he will allow you both to hang out again. Just know that sometimes it is the disease speaking and not the person! You are doing all the right things! We need more people like you, who stick by that affected person’s side no matter what!! 🙂 Stay strong!
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