JKR Updates

 Well, the Christmas cards didn't seem to happen again this year, but here's hoping that you all had and are having a very joyous season!  Kevin and I received a special blessing at Mass on Sunday for our 26th wedding anniversary (which is this week), and it was beautiful.  Thanks so much for all the continued prayers and support and meals!

Surgery to place a PEG tube (feeding tube) was "uneventful" and successful.  We have since both developed headcolds, however.  A parting gift from the hospital?  In any case, the feeding tube has already been a blessing as it relieves the pressure to rely on chewing and swallowing for nutrition.  Kevin has been getting about half of his calories through the tube at this point.  Thanks to everyone who stepped in the take care of the kids while we were gone!

 Hi all, I realize that when people ask about Kevin, they are wondering at least in part about his physical condition and the progression of the disease, so I wanted to provide a brief update. Kevin has almost completely lost the use of his arms at this point, although his left hand moves just enough to be able to drive the wheelchair with a joystick.  Every day (well, almost every day 😏) we keep his shoulders loose by stretching his arms up over his head and then out to the side.  If his arms aren't moved then his shoulders could lock up and that would be painful. In addition, just this month we have decided to use the patient lift for all transfers, rather than having Kevin stand and pivot.  His right leg was starting to feel too shaky and unreliable and we were afraid that a fall was imminent.  This means that we use the patient lift (Hoyer) to transfer from bed to wheelchair in the morning, in and out of the shower chair if it's a shower day, and from wheel...

 Apparently blogger is no longer sending people emails when a new post is added; they've stopped using whatever program allowed you all to "subscribe."  But Kevin has a work-around so hopefully we can start notifying you again. It's been a crazy summer.  I wonder what we'll remember most later....Remember the summer the AC went out and they had to come fix it twice? Remember when we had water in the basement and they had to dig up our yard to solve the problem?  Remember when we went to Children's Hospital for X-rays three times?  Remember when somebody stepped on a nail and ended up in the emergency room?  Remember when our oven broke and they came out three times to try to repair it?  Remember the carpenter ants?  Yes, ALL that stuff actually happened to individuals in our household this summer. But, I hope in the end we remember this as the summer the kids got to go to camp, where they ziplined and "blobbed" to their hearts' content.  The ...

Ok so I haven't posted in a while. Here's a catch up combo cross post of some poetry I posted to the ALS group. For hoyer hangin' you may need to Google hoyer lifts images or patient lift videos to catch the meaning if you're not familiar with this extremely helpful and totally ridiculous contraption. I’m hoyer hangin' Hoyer hangin' Like a potted plant In the corner hangin' Knees up, bottom down Gently swayin' Hoyer hangin' Hoyer hangin' Catch 'o' the day I got no say in Cheeks spread, face red Feet just danglin' Hoyer hangin' Hoyer hangin' The birthday suit  And sling are chafin' Shower chair launch  With a lunar landin' Hoyer hangin' Hoyer hangin' Please don’t drop me  I keep prayin' Up here awhile now  I’m still waitin' Hoyer hangin' Hoyer hangin' Legs numb, drafty bum I’m just sayin' No rush but let’s push  The button for layin' Hoyer hangin' Hoyer hangin' Towel dried bottom ...

May is ALS awareness month.  As such, a few folks from the Facebook ALS group who are local to the area engaged local media about the struggle to acquire access to experimental treatments.  One member in particular, Patricia (or Patty) tweeted Sheree Paolello incessantly until Sheree set up an interview with Patty and her kids.  Patty got a few others involved to help tell the story of how the FDA and congress has let down the ALS community.  The following links to the story that aired on the six o-clock news: https://www.wlwt.com/article/als-patients-fight-for-more-trials-as-there-s-few-drugs-available-to-treat-deadly-disease/36562722 UPDATE: For a continuation of the story, including a full transcript and raw footage, use this link: https://www.wlwt.com/article/dying-waiting-als-patients-fight-for-more-trials-as-theres-few-drugs-available-to-treat-deadly-disease/36563451 If you would like to help us battle, you can contact your congressmen here: https://iamals.org/...

 by Kevin Another ALS group cross post ... Do not go gentle into that good night. Rage, rage against the dying of the light. These last two lines from Dylan Thomas's very famous poem have  been rattling around inside my head a lot recently. Being neither literary scholar nor poetry aficionado myself, I had to actually look up where they came from. I was under the mistaken impression they were Shakespeare. "Surely from Hamlet," I said to myself as if I could name more than a handful of his plays. Regardless, the words have been haunting me. As I sat and reflected on them, with an eagerness to know why they were put into my head, I was struck by three images or thoughts. In hindsight, after having to research the poem by Thomas a little, the first one seemed obvious to me. The other two however ... less so ... and are in fact the impetus for this post. Do not go gentle into that good night. Rage, rage against the dying of the light. The Pulitzer-winning Irish poet, Paul Mul...