Sharing the trial and error learned lessons of a MS spouse caregiver / carer about family, home care, and transition to the care facility era from 23 years of living with Multiple Sclerosis as a family ... a ‘warts and all’ picture of living with MS.
An evening of modern hunter-gatherer bonding is a change not a chore for Patti. Errands can make for a pragmatic and fun outing in the care facility era of living with Multiple Sclerosis.
Daily knee contracture therapy has so improved the ease and safety of transferring Patti we decided on some winter scootering at Walmart.
Visual impairment (legally blind) and navigating an aircraft carrier sized electric scooter is always interesting especially with small children darting between aisles like deer scampering across the highway, or colliding with shoppers with their faces in smart phones.
MS fatigue is always the trump card and began to ripple through other MS symptoms of attention, memory, and eye hand coordination. The scooter began to crawl forward ever slower.
I try to keep a running banter going masking verbal cues with conversation. Sometimes it goes astray. “Patti you are driving so slow - some snails just passed us - stuck their hideous naked butts out of their shells - and mooned me!”
We lost all forward progress as Patti dissolved into uncontrollable laughter, in intensity and volume. Walmart might consider adding a ‘laugher’ along with their ‘greeter’. Soon not only were other shoppers passing us and smiling but starting to laugh also.
Once settled down, she seemed re-energized and we were picking up speed toward check out. … So why couldn’t I just keep my mouth shut?
“Patti, you are doing great! Keep rollin’ I see the snails up ahead. When we pass them, slow down, so I can 'drop trou' and get them back.”
With a screech of laughter she let go of the control - the scooter stops abruptly and Patti shaking with laugher starts to slide out of the scooter. Literally she would have been ‘rolling on the floor laughing’ if I had not caught her and straightened her laughing non-ambulatory self back into the seat.
EDSS>8 and ADL<1 may be quantitative measurements of Patti’s living with Multiple Sclerosis - but quality of life or wellbeing is another story and well, sometimes it takes a little help from those damn snails.