JKR Updates

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...

A quick thanks to all who offered to help with the grass!  We feel very blessed to be surrounded by such love and support.  Last night, I was feeling a little stressed by some of the household tasks for which I am under-prepared.  Kevin has always been the resident handy-man, groundskeeper, jar-opener, and spider killer.  I clean things, manage appointments, drive places, and make sure we eat everyday.  It has been a comfy division of responsibility that has worked well for us.  So as Kevin's disease progresses and I imagine myself having to wield a power tool or update software, I break into a cold sweat.  Last night was one of those moments, but Kevin reminded me that sometimes, God "speaks"... by sending people.  And then as if to drive home the point, I awoke this morning to a shower of texts and emails from you all.  💗

Well, it seems that I have successfully procrastinated in finding a lawn-care company long enough that now Zach is back at school and our yard is beginning to look rather wild.  I do have someone coming to give me a quote soon, but in the meantime the lawn needs some attention now.  If any of you has a teenager who knows how to drive a rider mower and is looking to earn a little extra cash, let me know!  We do not have a push mower, unfortunately.  Thanks in advance!

 Friendship, laughter, boat rides, sunshine, and delicious eats!  That's what we did last week in Michigan!  Thanks to Paul and Deirdre for going out of their way to make sure that we were comfortable.   It was such a joy to see friends, re-visit memories and make new ones.   An Evening Boatride

So today, we bought a van!  Kevin wanted to take a picture to send to a friend, and that turned into a video.  So I casually suggested that he use his fancy head-mouse to set the video to music and then, well, this happened:

We've had a couple more appointments at Perlman Center since my last post.  In case you were wondering, the Aaron W. Perlman Center at Children's Hospital focuses on helping people with physical limitations access different kinds of assistive technology and equipment to help them move around, communicate, etc.  Dr. Neel doesn't necessarily send all of his patients there since the ALS Clinic at UC Hospital staffs its own physical, occupational, and speech therapists.  But once he discovered that Kevin is a techy, he knew that the ability to access a computer despite loss of hand strength and dexterity would be a top priority. These are some of the questions that we were trying to answer: First, what kind of technology, eye-gaze or otherwise, exists for allowing Kevin to access a computer at the level he would like (e.g., writing code, not just point-and-click)?  When Kevin sits down in front of a computer, he uses the keyboard heavily, with multiple keystrokes at on...

Thanks to all of you who helped clean out our garage!  Everything pictured has been claimed, but stay tuned, there may be more!  We have been out looking at vans and are in the process of deciding what features are a priority (side vs. rear loading, manual vs. automatic ramp, etc). I must say that Kevin is handling the whole process better than I am at this point.  I had always hoped, after Kevin retired, that he would be able to purchase for himself some kind of an obnoxious sports car.  Not a wheelchair, or a van to transport one.  But Kevin is resilient as ever and says, "It's only stuff," and then he gets busy comparing features and, oddly enough, getting excited about it.  And since they all look the same to me, I'm happy to give him complete control over this decision and get exactly what he wants, whether it would be something new or used or bought or leased or whatever.  We have had several very generous offers from people who are eager to ...

Hi everyone!  Kevin and I are beginning to re-organize the garage and clear out some things in order to make room for a side-entry handicap accessible van.  If there is anything that you think you can use (and can pick up from us), please let me know; you will be helping us create space and also saving us from loading it up to donate elsewhere.  You can comment below or email me at janer7591@gmail.com.  Thanks! Ramps, jack stands, wheel chocks, oil recycle container, oil pan (oil is 5W20 full synthetic, unopened) Like new, from Ikea Floor jack, bench grinder, grease gun, circular saw Gas-powered trimmer with edger attachment and blower attachment Specialized mountain bike

Our remodel is finally 100% finished!  Thanks to DeVol Design, Build, and Remodel for taking such good care of us.  They were true professionals--courteous and sensitive to our situation, and everything looks beautiful!  I'm still marveling at the hardwood floors; in several areas they had to take up flooring, either to widen a doorway or because they removed walls.  They were able to save spare flooring from the old bathroom and replace the hardwood so that you can't even tell the flooring was touched! New cabinetry and mirror in the bathroom: *** Here are the new "barn doors" leading into the spare room adjacent to the bathroom.  You can't see it in the picture, but a pocket door was added between these two rooms so that the bathroom can be accessed either from that room or the hallway.   We're still struggling with what to call the spare room.  It used to be the "piano room," but nothing fits in there now but the couch and I d...

A quick apology to those of you who have attempted to comment on this blog, only to have your words disappear into cyberspace.  Apparently the comments were set by default to only allow comments from people with Google accounts.  Oops, sorry!  I have changed it, so it should work for everyone now.

First of all, thanks to my brother-in-law Todd for selling our car!  We are enjoying having the cash sitting in our bank account so much more than the car sitting in our driveway!  😀 In other news, this week Kevin and I were able to visit the Perlman Center at Cincinnati Children's so that Kevin could try out some eye-gaze technology.  As muscles in his fingers deteriorate, typing has become hunt-and-peck, or texting with thumbs.  In addition, it is difficult for him to hold his arms up to the keyboard. Essentially, the eye-gaze camera sits at the bottom of the computer monitor and tracks where he is looking at the screen.  Then Kevin can "select" (or click) on something simply by "dwelling" there (looking longer) or through the use of some kind of a button, which come in different sizes and shapes so that people can use them in whatever way is most helpful--even with a foot or by moving a leg.  Kevin liked a smaller button that he could cup under his pa...

A great big THANKS to Kevin's sister Jen who arranged for us to have some professional photos taken recently, as a way to celebrate our family and always remember this time together!  (And thanks to Jackie, the talented photographer who was willing to mask-up and venture our way, despite the windy days and rainy days and other obstacles Mother Nature sent our way.) A number of family members and close friends also recently send short videos to be compiled into a "virtual hug" for Kevin's birthday.  Thank you to all the contributors!  It was a bit of an emotional day to be sure, but it was so great to see the faces and hear the voices of so many people we love. Another series of thank-you's to the anonymous givers who sent the kids calligraphy paper and pens.  Lia in particular has been spending a lot of time learning such skills as how to add "bounce" and "flourish," and the results are amazing. Other fun crafts that have been...

Our remodel of the bathroom is almost complete!  We are now able to use all the "important" features, just waiting on the cabinetry to come in, and the barn doors for the adjoining room.  In the meantime, no workers in our house for a while means that Kaleb can have his morning Zoom meeting with his classmates without the sounds of hammering and drilling in the background. Thanks to Kyle, Steve, and Terry for building our ramp out the garage door this morning!  It is exactly what we needed and looks fantastic!

We are in need of 2-3 nearby men to help unload the hospital bed from Tim's truck into our garage on Thursday afternoon (April 9), around 4 or 4:30.  Let me know if you can help by calling me at home: 755-0625.  Thanks in advance! -Jane

The remodel of our bathroom continues.  Destruction is over and drywall went up last week.  This week the walls were painted and they have begun the tilework.  We will all be "relieved" (ahem) to have a toilet on the main level again. Yesterday we were able to have a telephone conference with Dr. Neel about some new issues and symptoms that Kevin is experiencing.  Even though we never did get the video portion of the call to work, it was comforting just to be able to relay our concerns and get his feedback.  He is prescribing an additional medicine, one that will hopefully slow down the degeneration of Kevin's swallowing ability and also help alleviate pseudobulbar affect (increased laughter/crying), which is common with ALS patients.  Kevin has made the decision to discontinue the voice banking; he has a significant number of phrases already with which to "build a voice" and the task is becoming more effortful. Earlier this week we were very blessed to...

Hi everyone, just wanted to let you all know that we are doing fine; no one in our household has any cold or flu symptoms at this point.  However, we are making an effort to self-isolate a little bit just to be on the safe side.  We have cancelled physical therapy appointments for this week, and are limiting visitors.  For those of you who have prepared meals for us in the past, thank you again!  But please take this opportunity now to focus on your own families for the time being.  We will be purchasing some frozen meals (perhaps even having the store deliver) and stocking our deep freeze. As of now, the workers are continuing construction on our house, but everyone is monitoring the situation and they have said that at some point they might need to stop for a while. I strongly suspect that Dr. Neel will be cancelling his talk on ALS 101 in April, or perhaps moving to an online format, but I will keep you updated as I hear more. Jane

The remodel of our house began last week, ironically on March "forth," which is what we are doing!  Demo seems to be progressing smoothly and steadily, but we are eager to see some construction.  Physical therapy for Kevin's shoulder has been providing some relief, both increasing range of motion and decreasing pain.  But he continues to experience quite a bit of fatigue during the day.  Also, we have noticed his speech is becoming slower and a bit more clumsy.  He will continue to voice bank as long as he can; the more phrases he can bank, the more authentic his synthesized voice will sound. Thanks again for prayers, meals, rides, etc.!  A special thank-you to our family members who gifted Kevin with a folding power wheelchair!  It arrived yesterday, and Kevin has already tested its off-road capabilities through the landscaping.  The kids think it is very cool, but the dog is not so sure. Thanks, also, to Aunt Suzanne for sharing her knowle...

From Jane Hi everybody, the remodel is scheduled to begin the first week of March or so.  Thanks to Maria for helping me re-organize (or, just "organize") my kitchen and dining room cabinets.  Thanks to Deb for her interior designing advice and to Kevin H, Jeremy, and Jonathan for delivering the exercise bike from Kevin's office for home use--I can attest to the fact that he has been using it!  And of course thanks to all of you who have shuttled kids around and provided meals and gift cards. Last week Kevin had evaluations for physical therapy, occupational therapy, and speech therapy.  He has lost some strength and dexterity in his hands, and suffers from some pain and loss of range of motion in his right shoulder.  So, typing on a keyboard is slow but he is still able to text-type on his phone.  Walking is still ok, if a bit unsteady at times.  We had a little show-and-tell during which we learned what an AFO is (ankle foot orthodic), which may ...

After sitting with the architect's sketch for a couple of weeks and talking with a realtor friend (shout-out to Terry Schneeman for offering his honest opinion and being an all-around good guy!), we have decided that moving ahead with a remodel of our home is the best course of action.  We have a few weeks to try to re-organize and de-clutter before they start tearing our house apart.  Naturally, that started us thinking about simplifying our life more generally and we've come up with a few things that y'all might be able to help with... Anyone in Butler County know where to discard electronics?  We have an old flat-screen TV that doesn't work, an old printer, etc.  If you wanted to volunteer to help us actually get stuff there (some of it's heavy), you get bonus points. We are looking to sell our 2006 Mazda 3 , so if you know of anyone who might be interested, note that it is a manual transmission.  Kevin is driving less and less and we are going to need the...

By Kevin The ALS Association is really an invaluable resource. When we realized that we would eventually need to address the issue of my being wheelchair bound and unable to do stairs, we started wondering whether we would have to move or try to remodel our current home. We reached out to Pinky at the ALS Association and she immediately responded with a curated list of contractors that have worked with other ALS families. At the top of the list was Jeff DeVol -  https://devoldbr.com/about/ . After reaching out to a few folks on the list, Jeff (personally), was not only the first to respond, but was available to meet right away. This alone was impressive since we had reached out over the holiday week. Jeff was great. He came over to meet us initially to get our idea of converting our music room, half bath, and laundry room (all situated in a block in the center of the house) on the first floor, into a small bedroom and full accessible bathroom. We showed him the space and he tho...

Hi everyone!  Kevin and I thought it might be a good idea to create an online "space" for folks to stop by and get updates on what is happening in our household.  Nothing fancy here, just posting news so that we don't inadvertently leave anyone out of the loop.  Please continue to text or email if that is what you prefer. For some background, Kevin first started experiencing weakness in his right hand in March of 2019.  Gradually weakness and other symptoms progressed until he was diagnosed with ALS in December 2019.  Over Christmas break we began to have conversations with the kids, essentially telling them that: Dad has a motor neuron disease called ALS. This is why his his hands/arms are not working. The doctors cannot make his arms better and eventually the disease will also other muscles in his body, including his ability to walk, but there is a lot we don't know about how or when that will happen. Dad has retired from work. We will be remodeling th...