What is your name? My name is Crystal Collinsworth.
How old are you? I’m 48 years old.
Where are you from? I’m from Northern Kentucky
Which one of your parents has/had HD? My daddy was diagnosed with HD in 2007. He was a police officer in Dade County, Florida, at the time, and he was forced to retire due to an incident that took place in which he was violent toward a female co-worker.
Do you have any other family members who have/had HD/JHD? My paternal grandmother also had HD. She took care of my grandfather, who had a disease and lost his ability to walk. She bathed him, dressed him, put him to bed. He went from using his cane to being in a wheelchair. Then she was diagnosed with HD. She suffered for several years. Once, a woman was always on the go, to work, to church, out shopping, to a woman who was completely and totally dependent on others. She lost all of her abilities, all of them. It was difficult to watch her decline. Her journey with HD was awful. My daughter, daddy, aunt, and home health nurses, took care of her. Everyone took turns in shifts pretty much. She passed away peacefully in her sleep in 2008.
When did you get tested? I got tested in April 2017.
Why did you decide to get tested? My sister Valerie got tested when daddy was diagnosed in 2007. She tested negative. I’m the only other biological child. After losing my grandmother in 2008 and losing my daddy to suicide in 2013, I knew I had to get tested for the sake of my girls. However, my neurologist diagnosed me with clinical depression in 2013 and wouldn’t let me get tested until I had taken the time to grieve my father’s death. He wanted me to be in a better place mentally and emotionally.
What was the testing process like for you? Honestly, I had a wonderful team of five people at UC Neurology in Cincinnati, Ohio. They were understanding and amazing. I spoke with a counselor, a social worker and went through different testing with two neurologists. At the end of the discussions and testing, they agreed to let me go to the next step, which is the blood test. I was really nervous, but the decision to get tested felt right to me.
Did you have family or friends there with you when you received your results? My ex-husband was with me when I went back to get my test results. He was completely beside himself.
How did you cope after receiving your results? I think I knew in my gut that I had it just because of the 50/50 chance of it being passed on to my sister or me. But, I was experiencing a few things that my doctors couldn’t explain, and HD is the only diagnosis that would have made sense. I did better than I thought I would. When I asked what my CAG was, the neurologist said 41. I took a deep breath. I didn’t cry at the time, but I could certainly feel a heaviness in my heart. I said, “Well, ok. We’ll treat symptoms as they come along. That’s all we can do. And today, everything is ok.” However, my main neurologist couldn’t believe it. He was certain I didn’t have HD and didn’t really want to order the testing.
Have you enrolled/thought about enrolling in a clinical trial? I’ve tried but have yet to become eligible for any of them.
Do you have any children? I have two daughters, ages 30 and 32. Thankfully, my children tested negative. That means the curse stops with me. HD ends right here, and that in itself is a beautiful thing, knowing that my daughters and grandchildren will never have to worry about HD for a single second of their lives.
Are you part of any support groups online or in your local community? I am a part of Help 4 HD International. I love this amazing organization. I also follow a few other online support groups, as well as AFSP (American Foundation for Suicide Prevention). I try to participate in a few Out of the Darkness walks every year and do fundraisers. I’ve also started “Cosmetics for a Cure.” I’m a beauty influencer for Farmasi Cosmetics. 10% of all proceeds go to Help 4 HD International. I would love to be able to find girls and women who have JHD/HD and do free makeovers for them. I know how it feels when we start to lose our sense of self and are no longer able to do things that make us feel beautiful.
What have you found in your life that helps you get through each day? Staying active in the HD and Suicide Prevention communities really helps me cope. I’m an artist too, so I stay very active with my art; photography, painting, writing. It helps me stay sane. After my daddy passed, it felt like the only thing that kept me going was to write. I love spending time with my grandboys, too, so I try to do that as much as possible. Being open about having HD and not feeling ashamed that I have it is a very freeing feeling. I’m grateful for each day of life.
How much did you know about Huntington’s Disease before you got tested? Between watching my grandmother suffer with it physically, and my daddy’s anger, depression, and taking his own life because of it, I knew pretty much, but I wish I had educated myself more. I didn’t know that it was the HD that was taking place with my daddy in the beginning. I’ve seen both sides of the disease at its worst. I continue to educate myself and participate in events that are educational and informative. I try to stay up to date with current clinical trials.
What is your biggest strength? Staying focused on what’s really important which is spreading awareness. Continuing to educate myself and others about HD/JHD. I try to stay hopeful that a cure is on the horizon.
What is your biggest struggle? My biggest struggle is not getting stuck in the "what if's". Because of what I’ve experienced with HD, I know what I’m up against and what it’s going to look like, how it’s going to end up. I try not to allow myself to feel like I’m in a race against time. My daughter decided we’re not going to live like that. We’re just going to keep going, is what we always say. Just keep going. I have other diseases, autoimmune and connective tissue, so I’m in pain a lot, and there are days when I’m unable to use my hands and days when I don’t get out of bed much. It’s definitely a struggle.
Are you symptomatic? Yes. I trip over everything, especially rugs. I’m clumsy and always running into things. I’m having issues with my memory as far as forgetting where I’ve put things. I have mild tremors that my PCP originally thought were Restless Leg Syndrome. I’ve been instructed to go ahead and handicap my home now. Talk about a hard blow. I’m 48 years old!
How do you describe Huntington’s Disease to people? The ugliest disease known to man. The worst of the monster diseases. I describe it as a fatal progressive neurological degenerative disease that is like having Alzheimer’s, ALS, and Parkinson’s simultaneously. There’s a 50/50 chance that the disease can be passed on to a child from a parent with HD.
How has knowing you have HD changed your life? In different ways; sometimes I’m really sad that this is happening to me. I’m in the prime of my life, really. Then again, I have understanding and compassion like I’ve never known. There is a calmness about me that I can’t explain. My appreciation for life, family, friends, and most of all, time runs very deep. I’ve accepted the fact that I have HD, but it doesn’t define me. It’s just a part of me.
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