As written for the 9th annual BHHDF event invitation for April 29, 2018:
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!
Huntington’s Disease has been in Bev’s family for the past 19 years, when she learned of her biological father’s then battle with the disease. Soon after, in 1999, Bev was tested and learned of her positive results with HD.
Currently, the disease is progressing in Bev’s life. She can no longer drive and needs assistance from drivers and caretakers through many parts of the day. She is still very independent for self-care tasks, but it takes her a very long time to get ready and to start her day.
Some changes in the disease from the last 12 months include more challenges with word pronunciation and articulation. At times it can be hard to understand what Bev is saying, as it relates to an increased loss of control and communication between the nerves and muscles all over the body, including the tongue.
This also has an impact on Bev’s ability to chew and swallow foods. She needs her food cut or blended into very small pieces, so some of her daily regulars and easy-to-chew items include smoothies, cereal and pie. She reports that she eats pie every day….pumpkin or apple are her favorites!
To see Bev, her movements, called “chorea”, are continually progressing. She cannot stand or sit still and her arms may uncontrollably move quickly across or above her body. This has an impact on her balance and gait and her risk of falling is an ongoing concern.
Due to all the moving and imbalance, it’s not uncommon for people to approach her and ask if she is intoxicated, as was the case at a recent school choir concert. Bev’s hope is that people will have more compassion, less judgment, and an open mind to others who may be battling slow, silent diseases like hers.
Bev reports that HD is most trying emotionally as well. As she wakes up daily, her very first thought is the reminder that HD is eternally present. It’s not going anywhere and this is going to be a hard day. And the days will get harder as time passes.
Bev’s main priority is to be up early with her children as they start their day. She wants to be present and in every part of their lives while she still can. However, her biggest challenges beyond the physical aspects are having to step back from her roles as a mother and allow other people to step in to assist the family.
On the other hand, she will say that her greatest blessing to this point to assist her with dealing with HD is her ability to openly talk about her challenges and limitations. She no longer wanted to put HD “on a shelf” and worry about it someday. She decided to confront all aspects of it head on and living this out loud is helping her as she progresses along this journey.
Bev’s ultimate hope is that she will be part of science and research finding a cure for HD in her lifetime. Now in our ninth year of the “Bev Hartig Huntington’s Disease Foundation”, we have successfully raised over $1.4 million and funded eight research programs.
With your support, we will continue to educate, fund and believe. Thanks to you, Team Bev, for your ongoing support and generosity!
In great hope to cure HD,
The Hartig Family
Keep in touch with updates, pictures, and ongoing info about HD on our website and FB page:
Writers: Mindy Irish and Pam Barr