Since we last saw many of you in 2019, 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. She has had multiple falls and has needed 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 medication was adjusted to manage this and has slowed her brain down to keep anxiety at bay. Thankfully, she has gained back six pounds in six months, and still loves to eat cookies and pie!
It is increasingly difficult for her to hold a conversation. She now receives weekly speech therapy for the life skill of saying, "My name is Bev. I have HD." She also receives occupational therapy to give her physical exercise and safe movement in her day.
