Greetings Friends and Family: The 2020 event is our 11th annual celebration and much has changed since our last update. Thank you for being such loyal friends and supporters and for your support in this journey to cure HD!
A few notes about this update: Bev is no longer able to participate in the interviews due to the progression of the disease, so this info is provided to us by Bob. Before we talk more about the presence of the disease, it’s important we get a reminder about Bev’s life before HD became such a focal point. This is who HD is robbing and who Bev really is.
Bob tells us, “Bev was a great athlete at many sports. She was the house organizer and set up all our gatherings and social events. She earned ‘Sales Person of the Year’ and was professional at all she did. She was the life of the party and never forgot a birthday. She always wanted to be everyone’s best friend.” She is also a loving wife and wonderful mother of two.
Bev’s timeline with Huntington’s Disease (HD):
1998: Bev learned that her biological father was in the later stages of Huntington’s Disease. She got tested and received the dreaded news she is gene positive.
2009: Bob and Bev chose to have a “coming out” party, inviting 50 friends and family to receive their announcement. Bev asked friends to help in the fight against HD and the first steering committee was formed for a fundraiser.
2010: The first event was held in April and 200 people attended, raising an amazing $80,000 towards finding a cure! By 2016,
TBHHDF hit the $1 million dollar mark of cumulative funds raised to date for research for a cure to this disease!
2013: HD had progressed and Bev was no longer able to drive. From that point, she needed a driver for anywhere she wanted to go. This was one of the first steps in Bev’s loss of her independence.
2018: Multitasking and higher-order thinking skills become difficult. She is emotionally challenged with the impact of the disease, as depression and loneliness set in. She reports, “My greatest challenge is having to step back from my role as a mother and allow others to assist them and me.”
2019: Bev needs more hands-on assistance to maintain her balance and walking. She falls frequently and needs help getting ready daily. Holding a conversation is difficult. She sleeps on the main floor to avoid using the stairs.
Here we are in 2020 and the disease has made a devastating, progressive turn for the worse in Bev’s life. These are the grim facts and this is the ugly, yet very real face of HD:
At a recent doctor’s visit with the physician who has followed Bev from the start, she asked Bev to make decisions while she still can regarding a feeding tube. Bob is leaving it up to Bev, and at this point she doesn’t want one. However, statistics show that without a feeding tube, patients with HD run a higher risk of aspiration and choking. Currently she can chew and swallow well, so that’s hopeful and encouraging!
Her balance is very poor and she can’t walk alone or she will fall. When in public, she and her assistants use a wheelchair, but when she’s out with Bob, he walks her arm in arm. Sadly, she has had multiple falls and has received 12 staples in her head in the last six months.
Bev’s anxiety levels were beyond control recently, so much so that she could not focus, sit still, or even concentrate to watch a TV show. Her meds were changed to manage this and have slowed her brain down to keep anxiety at bay. Thankfully she has gained six pounds in six months….and still loves to eat cookies and pie!
She can no longer talk on the phone or hold a conversation. She now receives weekly speech services for the life skill of, “My name is Bev. I have HD.” She also receives occupational therapy to give her physical exercise and safe movement in her day.
How they are coping: There is full-time help for Bev with three shifts of assistants during the day. The AM staff help with getting her showered and dressed for the day. The day help takes her to appointments and lunches with friends, and the night help assists Bev with dinner and the needs of the family.
With Bev, life goes on: They have weekly Saturday dinners out with the family and Church and brunch together on Sundays.
Bob tells us the hardest part: “She knows what’s going on and is fully aware of everything. She doesn’t want the help, but she knows she has to take it. In all reality, she just wants to be herself, but she can’t….she is trapped in this body of hers.”
The good news: Bob promised Bev she will stay at home and will not be put in a care facility in the later stages of HD.. When asked how she’s doing, Bev always, always smiles, hugs and says, “I’m great!”. Even in the darkest of days, she still chooses joy!
In great hope to cure HD, ~The Hartig Family