Update on Kevin's health

 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 wheelchair to bed at night.  Kevin spends all day in his power wheelchair as it is by far the most comfortable chair for him to sit in.

Kevin's breathing, although weakened, is still fairly good.  He has just acquired an AVAP (average volume-assured pressure) machine for use at night.  This is a form of non-invasive ventilation that supports breathing by just giving a little boost of air when it senses the patient is taking a breath.  Generally the issue with ALS patients is not a lack of oxygen, but a weakened diaphragm which leads to poor gas exchange and a build up of carbon dioxide in the blood.  

At the end of September, Kevin is scheduled to have a PEG (percutaneous endoscopic gatrostomy), whereby a feeding tube will be placed through his abdomen.  While he can still eat most foods on his own, chewing has become effortful and meals take a long time.  In addition, the doctors want to get this procedure done before breathing becomes too compromised, even if we aren't relying on the tube for nutrition right away.  It will also be much easier to keep Kevin hydrated and give medication, as swallowing thinner liquids and taking pills has become more difficult.

Lest you think the losses characterize our day, we do have other things going on!  Kevin and I are part of a wonderful "book club," reading and discussing the book Searching For and Maintaining Peace by Fr. Jacques Philippe, and we will be starting another one soon on St. Joseph.  In addition, Kevin (who still has very good head control and accesses his laptop and tablet with either a headmouse or eye-gaze technology), has been asked to serve on a technology advisory committee through Team Gleason.  The Accessible Technology Enhancement Advisory Members, or A-Team, is comprised of several members of Team Gleason in addition to volunteers around the country who, like Kevin, have ALS and also a strong interest in and knowledge of technology.  They help guide the larger efforts of Team Gleason as to where to focus efforts in order to best serve the ALS community.

Incidentally, if you are interested (and feeling a little brave), there is a movie about Steve Gleason on Amazon Prime, simply called Gleason.  It is very good, and honest, if a bit hard to watch at times.

Thanks, as always, for all the meals and rides and favors and prayers that you continue to pour out on our family.  We are blessed!

Jane