JKR Updates

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...