An Update From Bob

Dec 10, 2022 | Blog

As we start 2023, The Bev Hartig Huntington’s Disease Foundation remains grateful and humbled by your generous support!

Over this year, we have seen many changes in Bev and her battle with HD. She continues to fight against this horrible disease and often lets us know that she is still here, and not giving up!

Since there is no treatment for HD, the whole goal is to keep Bev calm and happy. This balancing act can be very difficult at times, because if she is not calm, she can injure herself or the caregivers. Her involuntary movements and her anxiety have presented many challenges. The main challenge has been her breaking her wheelchair again this year in August. We have been using a rented chair since, and she has been battering it severely for the last 3 months. We have now moved Bev to the couch in our great room for the majority of the day. It seems to be a good solution to keep her safe as we continue to wait for the repair of her custom wheelchair (thanks Covid).

Bev usually wakes each day with a bunch of nervous energy. It now takes two people to change, dress, bathe, and transition Bev each morning. She has almost completely lost her ability to walk. As we administer her medications, Bev slowly begins to calm down as the day progresses. Herein lies the challenge. We need to keep her calm, but also lucid for feeding. We seem to be in a good routine lately, because luckily Bev continues to eat very well. All of her food is blended and fed to her by a helper, very slowly, to avoid choking. Bev continues to lose coordination and is having a lot of difficulty speaking these days, but she is still able to communicate her needs and wants to those of us who are with her daily. She loves and appreciates all of the incredible ladies who take such great care of her each and every day. And she loves visits from friends, she has always been a social butterfly and it makes me sad to see her trapped inside of her own body.

Although genetic, Bev and I did not grow up with HD in our homes. As her journey progresses, our family is witnessing the severe decline of a great woman, wife, mother, daughter and friend. Anger now turns to determination, to continue our battle against this terrible disease. We so appreciate all of the well wishes and support from everyone! It is our hope that 2023 brings new evidence of medical breakthroughs, so we may put an end to Huntington’s. We look forward to seeing everyone at our annual charity event on April 29, 2023! All funds raised from the event go to funding research to find a cure for HD!

With sincere gratitude!

Bob Hartig