Huntington's Disease Society of America
Where do I begin? I am Jo Hines. More importantly, meet my mother, Jeanie May. My hero, my strength, my superwoman, my drive and passion, my humor, my confidence, empathy and attitude. I am her voice. And the voice of my grandmother & uncle who passed away from HD, for my sister who is becoming symptomatic, and my nieces, great niece & nephew who are at risk. My cousin who has dealt with HD all her life too, and all of my family and friends that have been touched by HD.
I don’t ever remember a time in my family without it. My maternal grandmother had it and I was scared to death of her as a child. Everyone just thought she was crazy. They didn’t know HD back then, but they sure knew Effie was nuts! My mom was diagnosed in 2009, but we knew long before that she had “it”. The elephant in the room. When my dad passed away in 2001, my mom started to really become symptomatic. Since then, it has been a very difficult and tumultuous road. I don’t know how many arguments we have had, how much patience was lost, how many I’m sorry’s have been given. It’s been a lot. But there have been way more I love you’s and I am proud of you’s so that’s what matters most.
Mom is now in the late stages of the disease. She recently fell and broke her hip at her assisted living facility, and the cognitive and mental issues make it just that much tougher to recover from a hip replacement. But, she is. She is now in the nursing home at the same wonderful facility, and she will remain there. But she is just so darned tough! You cannot keep this woman down. She is still a mother. The other day I was so sad, and told her I was so scared for her. She just looked at me and said “Joey, don’t be sad for me. I don’t want you to be sad. So I will walk…for you” And she did! She will get right up and walk even though it is painful and hard. She is so lucky, if you can call it that, but lucky that she can still speak, walk and swallow, although that is becoming more difficult every day. So many families have loved ones that can’t communicate at all. I am the luckiest girl in the world. I still hear “I love you Joey”, every day.
It has been so difficult to see this bold, beautiful, funny woman become this shell. We will fight it together and my family and extended family will fight it for her! She still continues to amaze me. This is a despicable, disparaging, hateful disease that takes so much from everyone. After all that is said, I just want people to know NOT to give up. And reach out. You can’t fight it alone. There are too many support groups and fundraisers and people that KNOW. HD is so unknown, it’s hard to explain to someone who isn’t around it. So don’t give up your fight, either. I have not been tested, nor do I choose to be. I choose to live my life knowing I might have it, as opposed to knowing I do. I have too much fighting to do to worry about that!
If you are close by, please consider joining our first ever team hope walk in Morgantown on May 31st! www.hdsa.org/thwmorgantown