Update June 1, 2121. Weakness continues, muscles around elbows limiting arm movement to a point that getting my hand on the wheelchair (WC) controller is a struggle. Scheduled visit from WC supplier for advice on controller issues. Looking into availability of a hospital bed for sleeping. Fell forward out of my power wheelchair last week; few scrapes on forehead, right knee and shoulder, otherwise OK. Attitude and spirits are high thanks to wife, kids and grandkids.

Early, during the time of the clinical trial, I alternated between a walker and a power wheelchair whenever we went out to a gathering or dinner. It depended on the venue. However as I was becoming weaker and cleaning myself after going to the bathroom became difficult; my daughter Jeannie installed a bidet on my elevated toilet in 2015. Even though the connection to the hot water was not available it became a vital addition. Ambient temperature water, depending on the season, can be quite chilly but nevertheless necessary for cleanliness. I became accustomed to the winter spray.

As I got weaker I fell once getting into my power wheelchair from the bed in the morning. I also fell one time in the bathroom as it became more difficult for me to get myself up off the toilet or out of the shower. As a result I became acutely aware of the proper body position, how my feet are firmly on the floor and how much I could turn my body before sitting down or standing up or changing position.

Falling against the glass shower doors called for them to be removed and a curtain installed. my daughter Ruth got a ‘Shower Buddy’ that became a standard fixture for me to be able to shower. Ruth also got an ‘EZ Way’ battery powered, portable lifting device with a sling, that enabled transfer from wheelchair to shower chair with a wheeled base. Jan was able to push the shower chair near the shower, attach it to a ‘bridge’ that enabled the shower chair to slide onto a base within the shower. The wheeled base and bridge is removed, shower curtains closed and shower commences. As I became weaker, after I adequately sprayed myself and turned off the water, Jan would scrub me down, close the curtain and I would rinse myself. The showering process takes 30 to 40 minutes.

In June of 2016 after an ultrasound procedure on my carotid arteries the doctor suggested a stent in my right carotid artery. About a week later I was in the hospital being operated on and wide awake. Two doctors performed the operation while I watched the progress on the monitors they used to go from my groin area all the way up to just below my jaw to install the stent. During this time a nurse would keep talking to me and having me repeat things she would say to me. Supposedly this was to assure the doctors I was still coherent and none of the small clot they were trying to remove from the artery escaped into my brain. The doctors also talked to me, explaining what they were doing, what I would be feeling and reassuring me everything was going well. After the operation I spent one night in the hospital. My daughter Ruth spent the night sleeping in a chair in my recovery room. The next morning when I woke, I was entertained for a short time, visually, by some weird patterns when I blinked my eyes very fast. I was told it was probably due to local anesthesia I have been given during the operation. That afternoon I was released and went home.