JKR Updates

Lorri Carey is a local woman living with ALS who started a podcast called I'm Dying to Tell You .  Recently, she interviewed Kevin and three other individuals with ALS to answer questions submitted by listeners.  You can listen to Part 1 here: https://imdyingtotellyoupodcast.com/episode/what-you-want-to-know-but-were-afraid-to-ask-part-1/

It is a noise filled world out there. So much so, that our brains are literally wired to filter out most of it. And by "literally", I mean really, really, actually, no bruh srsly. Not the "figuratively" that my kids keep trying to redefine it to. (If Webster's  teenagers take over the family business, we're doomed, ain't we.) So much noise. Internet. News. Media. Commercialism. All in contention. All sewing dissension. Bloggers and vloggers all monologuing in tension. With youtubers and tiktok-ers all starved for ascension. Everyone preying on your precious attention. It's almost straight out of a Dr. Seuss book. Remember when spam came in a can? My spam folder, dare I open it in search of lost emails, reminds me of the bathroom stall walls from school or rest stops. Daily robocalls and texts and a snail mail box full of junk ... well, junk and charities. Wow! There are a lot of charities. So much need in the world. I hate to classify charities as j...

I had clinic last Wednesday. My previous poems had been shared with the clinic team, and so, Dr. Neel, my neurologist, challenged me to write a poem about "bolus formation". So after Google-ing what that was and a few other medical jargon-y terms that I thought he'd appreciate, I sent him this as a medical follow-up question through MyChart. [I included the glossary here so you don't have to look everything up, but I sent only the poem to doc Neel.]   Subject: Regarding my bolus formation  I have a problem with bolus formation That train isn't leaving the station  My tongue won't move food  Lips aren't in the mood  A disaster in the mastication It's not a problem with lubrication  I produce saliva like a new occupation  Coughing fits of hi-jinks Plague my oropharynx  Now swallowing causes consternation  My dysphagia is so hard to swallow  Leaves an oropharyngeal hollow  With digestion below us  Disintegration of bolus Is n...

 by Kevin  It's been a while since I've posted. Thought I'd do an update on my progression since people are probably curious, and there really is no casual way to ask, "So! What can't you do today?" I generally don't like to dwell (privately) on my physical disability too much because it draws my mental state down. Self pity is a deep dark hole, and a mercilessly difficult one to climb out. [That's not to say that I don't like sharing triumphs or empathy with others fighting beside me.] I do gain strength trying to help others out of their well. Whether they have ALS or are collateral victims, we're all climbing out of something. Just best to keep an eye on my own footing. I had tried to do this awhile ago and even had a longish post typed up where I tried to articulate my physical and mental struggle unfiltered. Kind of a raw, uncensored, director's cut, if you will, of what I feel like I'm dealing with every second of every day. ... T...

 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...