What is your name? Stu Hopper
Where are you from? Born in England, UK, I grew up in Connecticut and am currently living in Fort Lauderdale, FL, USA.
Who are you a caregiver for? Carlos Contreras, my spouse/ my best friend / my husband
How long have you been a caregiver for them? Let's go with four years, but he has needed help the last ten years increasing each year.
When did you first learn of Huntington's Disease? At his diagnosis three years ago, January 11, 2019
What's it like being a caregiver for someone with HD? Because of his personality and not having a mean bone in his body, he is a wonderful partner; however, he is in denial of his disease, which might be a good thing. This causes him to be unaware of how I'm on duty with him, helping at all times to keep us both smiling.
What do you use for your support system? (online support group) I have a strong group of friends that let me vent, and they suggest. I have my local HD group, who are wonderful, and our leader Laura, HD positive, is always available to talk. I'm on HD groups on Facebook and now getting closer and involved with Help 4 HD International, who are just such advocates, and for me, I've just touched on how wonderful they are and the HD community is. I'm honored to be part of this but let's get the cure today.
What sort of resources have you found in your local community? Support groups, PAP for medication.
Do you work a job separate from being a caregiver? yes, two
What is your relationship with your loved one like? He is my best friend; we could not do better together.
What symptoms of HD that your loved one experiences do you find the most challenging? Speach, denial, cognitive function, walking., swallowing food, and just so "clumsy and messy," but that's ok; it makes me love him more.
What are some things you enjoy doing with your loved one? Beach, travel, eat, TV shows, get older together in our journey called life.
What sort of precautions do you take to keep your loved one safe? (wheelchair, cut food, puree food) Always watching, adjusting, protecting with literally everything. Watch during eating.
Do you have any other family members at risk for HD or symptomatic? Carlos's side of the family, my in-laws: 2 sisters, no symptoms 1 of the sisters had three children also no symptoms, who had five children, all not tested.
How has HD changed your life? I have met the most amazing people. I am sad at how far medicine needs to advance; I am humbled and much more compassionate and emotional on nearly everything. There is not a minute that goes by that I'm not thinking about HD. I have researched HD near-nightly on google while watching TV. I never ever stop.
What is something you wish people understood about HD? It changes everything, and we must continue to push for trials and laws to keep research and resources available.
What do you do/find that helps you cope with caregiving for someone with HD? patience and close friends to listen and vacations
How would you describe HD? ALS, Dementia, Parkinson combined, and they are very clumsy, and they need so much help and deserve that help.
What is something you would like your loved one to know? I will do everything I possibly can to protect, find a cure and give everything up I have to find a cure. I will never stop trying for us.
If you could give any advice to a new caregiver, what would you tell them? (for example, ss, driving talking to children) Join groups, be ready to see some very difficult situations, always remember it's the disease and be thankful for the time we have now. I cry nearly daily, but my faith tells me there will be a cure, and then I can look back and say what a shame for tears. Be happy; that's what my husband tells me, and he is right.