JKR Updates

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...

One of my favorite Christmas ornaments December 30, 1995 Some of you have asked what our day-to-day is like.  This disease has some crazy symptoms.  In addition to the muscle atrophy which has led to throat spasms and taken away Kevin's ability to walk, type, write, feed himself, open a door, scratch his own head, wear his contact lenses, hug his children, brush his teeth, shave, shower, or turn over in bed without assistance, he's also experiencing these weird symptoms: increased laughing and crying (it's a real thing--"pseudobulbar affect" or PBA), oily skin, tears that burn, fierce itching, and sudden muscle spasms in his legs (I call them "jumpy legs"). Sometimes these symptoms combine in demonic ways.  Imagine this scenario: you have sudden, intense itching on your scalp, but you can't lift your arms to scratch, so your spouse has to sit next to you and dig in with a hair brush while you give directions.  The ridiculousness of it all makes you l...

  Merry Christmas to all of you! Our kids gave us this amazing photo blanket!  Such a perfect gift!  They even included our high school graduation photos, ha! I looked at mine and said, "Wow, look at all that hair."  Then I looked at Kevin's and said, "Wow, look at all THAT hair." 😆

It has been a number of weeks now since we acquired Kevin's power wheelchair.  After a bumpy start (or failure to start, as it happened, one day after we brought it home), the chair was repaired and has been working flawlessly.  Kevin even convinced the tech who came to the house to add the "outdoor profile," which allows him to go up to 7MPH.  It has been since been suggested that the "Slow down for children" signs posted along the driveway might be directed his way. Because of the chair's amazing positioning capabilities, Kevin is able to be comfortably mobile for greater lengths of time.  It offers significant head and back support, the ability to adjust legs and back and seat tilt (he can almost lie flat in it), and a four-inch air cushion to sit on.  Kevin still has very good control of his head and neck, so the chair is equipped with a joystick and a head array, so that as he loses function in his hands, he can switch to controlling the chair with head...

It was a difficult week for me.  First there was news of the death of a UD student, and while I do not know his family personally, I feel a certain kind of solidarity with all moms who send their kids off to school with a goodbye and a prayer and a hope that you never get a call in the middle of the night with bad news.  How we wish we could protect them from, well, everything.... Then Kevin and I learned of the death of Tyson, a member of our ALS Association support group.  Tyson and his wife Kristen were regular attendees at our meetings.  We struck up a sort-of texting friendship, limited as we were by the nature of ALS and then Coronavirus, which kept us all in our houses.  Usually our texts consisted of me asking for advice on something--hospital beds or toothbrushes, and then Kristen answering with links and support and cheerfulness. Tyson was 36.  They have two young children.  Oh, my heart....  And yet, death is a tragedy no matter the age...

From Jane's brother Andy:  As many of you know, Jane and Kevin are involved with the Central and Southern Ohio ALS Association.  Their mission is "to discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest."  No doubt a good group of people doing good works.  The Association is having its annual Walk for a Cure on Sunday, September 20th.  This a chance for us to give back to this organization.   Here's how it works.  Usually, they have a physical walk.  Typically in Winton Woods.  With COVID, this year's event will be 100% virtual.  People are still encouraged to get off that couch and GO FOR A WALK, but participants are doing it individually, wherever they want.  (For example, I've decided to take my walk in New Jersey.)  I've registered and set up a team called "The Walkie Talkies."  If you are interested, please join our team, spread ...

Hey everyone!  I'm going to brag about Kevin's new project!  I understand that I'm writing to a varied audience here; some of you are very tech-y and some of you are more like me and just need the picture painted in broad strokes.  I think you know who you are, but if you need some help deciding, I offer this: When I say "Raspberry Pi, " do you think dessert?  If so, then you're with me.  Go ahead and cut yourself a nice big wedge of pie and read my scoop, the "tech lite" version.  And those of you already drooling for some details can just skip below to Kevin's own words!   The "tech-lite" scoop... Kevin had discovered, through his visits to the Perlman Center, that when people with motor disabilities need to be able to use their computers without using their hands (in other words, by using a head-mouse or an eye-gaze tracker), they are often limited in very specific ways.  Products are designed to work with one type of machine (for ex...