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...

by Kevin I took a stab at a limerick in my tribute to Steve Martin and really enjoyed it. Having never written poetry before, I wanted to try something else. I couldn’t really keep to a strict rhyme scheme or meter, but the words just started spilling out haphazard like. I guess that makes it an ALS rap. (Though I'm not a big fan of rap, lol!). I’d say that I won’t quit my day job ... but I already did, so ... if this ALS gig doesn’t pan out, I don’t know what I’m gonna do! Un-rapping Presence Amyotrophic lateral sclerosis, Not quite as bad as chronic halitosis. Ultimately total muscular paralysis With no means for any dialysis   Of the toxins, head to moccasins, Body permeated and breathing overrated. Amyotrophic lateral sclerosis, Short changed life at time of diagnosis. In constant danger of rash depression   A guilt filled burden disorients impressions   Of self worth, even life on earth, Self realizing found agonizing. Amyotrophic lateral sclerosis, Eyes clamped tigh...

by Kevin I am going to cross-post another entry I posted on the Facebook ALS group because it illustrates some of my story as a newly diagnosed person with ALS as well as how I’ve dealt with it since then. This was, in fact, my second post after receiving tremendous support from the group for my poem and honoring of Steve. I had started immersing myself in others' posts and felt myself drawn in. Sorry for the length. Guess Twitter would be a poor second choice for my social media break-out ... I hope you like it.

By Kevin Hello everyone. It’s been quite a while since we’ve posted and MUCH longer since I have. Ok, so this is only the second post I have actually written on this blog. Jane is much better at this kind of thing than I am. But to quote one of my favorite movies of all time: Jimmy : "I got something to say." Man : "All right, say what you've gotta say." Jimmy : "I don't know if it'll make any change, but I figured it's time for me to start playing ball." -- Hoosiers The past year has been tough on our family. I don’t know about you, but where we live, there’s been this nasty flu-like virus that’s got quite a few people concerned! If you don’t follow the local news like I do, google "coronavirus", or "COVID-19" if that doesn’t give any results ... you’ll see what I mean. I have two things I want to share. The first follows from Jane’s previous post about her "friend" Steve. Steve had ALS, and sadly passed away ...

To clarify, I've never actually met this guy.  But I do know something of his journey with ALS, and his lovely wife Chisa and their two children, partly because he has been very active on Facebook and partly because his posts about their family's journey rings familiar to me.  His posts are sometimes hilarious, sometimes inspirational, and always honest.  Lately he hasn't been doing so good, and there's been a lot more talk of heaven.  The length of time between his updates has me worried.  Yesterday his wife posted that she thinks the end is near.  Is it weird that I'll miss him?  I find myself wondering, will Chisa be ok? This is Steve's YouTube channel.  Check out his gorgeous nature photography. https://www.youtube.com/channel/UCi9Gslv8YoOypEzXl8RRmzg/videos

Last week the governor of Ohio added ALS to the list of qualifying medical conditions, allowing Kevin to schedule his first vaccine for tomorrow!   We are relieved to see things moving forward, and eagerly await the day that we will all be protected. Kevin's speech is noticeably slower and more effortful.  I can still understand him most of the time during the day, but when he is tired (or frustrated, or laughing), he is very difficult to understand.  We are awaiting the arrival of an assistive communication device through Tobii Dynavox, but it will likely be May until it arrives.  Essentially, it is a tablet with built-in eye-gaze technology that will attach to his wheelchair and speak for him when he "clicks" on buttons by looking at them.  The software is customizable, so he will be able to create buttons with frequently used phrases, like "Let's have tacos," or "What's going on with our internet?" or, more recently, "I have an itch!...

We had "clinic day," a couple weeks ago.  This is like four or five appointments all bunched together in one day.  We saw a physical therapist, occupational therapist, respiratory therapist, speech therapist, and of course Dr. Neel.  The main things that came out of the visit were a plan to move ahead with a device to help Kevin communicate, and an adjustment to medications that have alleviated some of his pseudobulbar affect (discussed in the last post) and...TA-DAH...sleep better!  Which led to this conversation at the pharmacy later that same day: Pharmacist: Has he ever had this medication before? Me: No Pharmacist: It might make him drowsy. Me: That would be so awesome. Pharmacist: And it starts working in 15 minutes. Me: I could totally kiss you. Actually, I didn't say that last part.  I was in the Walmart drive-thru and it would have been unfeasible, anyway.  But I think the clouds did part for a moment and maybe a rainbow appeared. In other news, we...