As written for the 2017 Annual Fundraiser Invitation:
Greetings Friends and Family:
Each year we sit down with Bev to get an update to share with you on her year and progress as she battles HD. This disease is progressive and we thank you for being part of her story!
It has been 18 years since Bev learned her biological father had Huntington’s Disease (HD) and that there was a 50% chance of having it herself. She chose to take the test and the results were not in her favor. She has been living with HD since she got her results for testing positive in 1999.
HD is a slow, progressive genetic condition that runs in families, and to date there is no cure. Many with HD will die from falling due to lack of balance or from choking due to the inability to chew and swallow. Bev’s father later died in his mid 50s from the impact of a head injury after he fell while living in an assisted-care facility. She is forever grateful to get to know his story before his passing.
After the diagnosis, but without any symptoms, Bev and Bob lived in absolute silence about it for years. She was still doing all she wanted to do in a full life, having her children, and working full time as a successful sales rep, yet her “secret” was tearing her apart. She knew the only way to make it through this was to be real about her struggles, make her disease public, and help educate those around her with what was to come. They had a “Coming Out” party in 2008, the “Bev Hartig Huntington’s Disease Foundation” and board were developed, and the “Team Bev” collaborative battle to fight and bring awareness to HD began.
Here we are in 2017 and a lot has transpired in ten years. While there is no medication to slow down or cure the disease, Bev’s current medications help control her anxiety and depression. HD is often described as a mix of Alzheimer’s, Lou Gerig’s Disease, and Parkinson’s, so mentally knowing what is likely to come is one the hardest parts of the battle for all involved.
To paint a current visual, if you don’t know Bev and you saw her in public, you might think she was drunk, to be frank. Her movements are sharp, her balance is unstable, and she does not stand still. Most recently when shopping in a grocery store with a friend, a store manager approached her and blatantly asked, “Are you ok? Do you have something wrong with you?” Bev smiled and kindly replied, “Actually, yes. I have a degenerative disease called Huntington’s Disease.” The manager apologized and realized his approach was extremely inappropriate. This disease tears families apart. It is destructive and debilitating, but Bev’s life is bringing awareness to the impact of HD.
A typical morning for Bev requires she take two full hours to get ready for the day. The process of taking a shower, doing her hair and make-up, and getting dressed are daunting tasks, but she allows ample time for the routine. Choking is becoming more frequent as she attempts to chew her foods. The challenge comes from a combination of her tongue getting in the way and her oral muscles periodically failing to work in unison. To combat this, she slows down as she eats, takes smaller bites, and stays away from foods such as tortilla chips and steak, which tend to be problematic.
To assist Bev in keeping her days productive, she has four hired assistants that share the role in the morning and evening to aid her with starting the day and getting the kids off to school. She also has hired drivers transport her three times a week to appointments, grocery shopping, and errands. “Tuesday Tennis” is still a fantastic social and physical outlet she is so very grateful she can enjoy….and also brings a big smile to her face!
At this point in the progression of HD, Bev has many positive outlooks, but she is most sad that she has lost her ability to drive. When symptoms worsened, she discontinued driving back in 2013. As an adult, slowly losing your independence for necessary tasks such as this is at the point in the crossroads where humility meets frustration. Can you imagine? She didn’t realize how much she’d miss this life freedom, but she’s grateful to be able to enjoy her eventful calendar like she does!
The family has turned their pain into purpose and Bev’s disease is now rippling large waves of impact through the HD community and into scientific research for a cure. Since our start in 2010, now heading into our eighth fundraising event, the “Bev Hartig Huntington’s Disease Foundation” (BHHDF) has raised over $1,000,000, supporting three scientific studies and one Indiana program assisting other families living with HD! Your continued involvement in their lives and mission is making a tremendous difference for families struggling with HD now and in generations to come.
Thanks to you, Team, the waves of positive impact keep coming!
In great hope to cure HD,
The Hartig Family