MUSIC: There are many people who could not get to the benefit concert in Amherst or were not free to watch on ConcertWindow as it was happening. It was a huge success and I was humbled by the love for Kathy that was shown and the respect that was shown for my caregiving. I’ll talk more about the benefit, what happened and… Read more →
Huntington’s Benefit: Web Broadcast
MUSIC: The benefit concert that Mike Orlen and my friends are giving for Kathy and our UConn Huntington’s Program will be web broadcast on a site called ConcertWindow.com. If you can’t make it to the actual concert in Amherst this Sunday, 7pm you can watch and hopefully donate online. The broadcast is “pay what you wish”. The new flyer about the show with… Read more →
Venturing outside for the first time
CAREGIVING: Sometimes the biggest reward from taking care of Kathy is a smile. Just knowing that she is enjoying something makes me feel like it is worth it. Since she can no longer really speak it isn’t easy to tell. Almost always it is something simple. I wet her lips with cold water. Clean her teeth. I give her a taste of… Read more →
A Benefit Concert for Kathy and the Huntington’s Clinic at UConn
MUSIC: I am humbled and grateful. Some of my musical friends are giving a concert to benefit Kathy and the Huntington’s Disease Program at UConn Health Center. That is where Kathy gets treated for HD (and I get support). The concert will be Sunday, July 27th at the Nacul Center, 592 Main Street, in Amherst, MA. Bruce King is a wonderful singer and guitarist. He holds the distinction… Read more →
Getting back into a schedule
CAREGIVING: The following few weeks in June had their ups and downs but at least it wasn’t the roller coaster that it was when Kathy was in the hospital. There is a routine that we got into and although there are always changes and tweaks, a schedule helps a Huntington’s Disease patient. It is one less thing to get anxious about,… Read more →
So, where were we?
June 23,2014: Things are getting back to a vague sort of normalcy now. I’ve kept notes on what happened on this day or that day to fill in the blanks in this blog. I’ve posted a few little updates on Facebook but many friends don’t loiter there. If you blink it rolls right past you. Just like life, I guess. In case… Read more →
First days home
CAREGIVING: The first few days home were generally pretty good. I guess anything was better than pneumonia in the hospital. But this is still Huntington’s and we are biding time. The first morning was my first poop clean up since the feeding tube started. Took some getting used to but it wasn’t bad. Some of the neighbors called to… Read more →