Tuesday, July 19, 2011
summertime with multiple sclerosis
Summertime is just plain ‘enshrined’ in our culture.
Summertime is also the time of the greatest disconnect between living with Multiple Sclerosis and living without MS, the parallel universes are furthest apart.
Beach, backyard bbq, pools were particularly challenging in our past decades because I needed to juggle MS spouse caregiving and parenting our daughter, kind of like dodging heat for MS while trying to keep up with a heat seeking missile. – and hey, somewhere in there I love the surf myself.
“How’s Patti doing?” is not only polite and well intended but logical when meeting old friends or new people in the more sociable summertime.
You have to do an instant audience analysis of the inquirer’s MS knowledge and experience, but frankly after 21+ years of caregiving most people just want a short social answer. “Patti is safe” has been my summer 2011 response. Inquiring minds can always continue.
Heat exacerbates MS symptoms. Uhthoff’s Phenomenon can get so pronounced in Patti that if she is talking while I push her wheelchair out of an air conditioned building her speech will start slurring within yards of the door.
Sometimes you never really know if it’s summertime or progression. Until this summer, I would sit in awe of Patti’ apparent immunity to brain freeze as she would suck down a milk shake or slushy; yet now days she physically struggles to hold a cup and manages at best several sips and is done.
Admittedly an unconventional medical barometer, but last summer she could hold safely a cigarette now she wears a fire retardant smoking apron.
Recent studies have demonstrated that outside temperatures trump even air conditioning. MS fatigue and fatigue in general leaves Patti wanting to “just go to bed” on most nights around 7:30 PM. Yet since June if I do not call ahead I increasingly find her already in bed immediately after dinner at .
Or, I can always answer “Patti has an EDSS greater than 8 and her MS symptoms are exponentially multiplied by heat intolerance” – say what?
She’s safe – surf’s up dude!
Pictured in over a quarter century of 'summer-time', my Dad died 14 yrs ago and Patti has not walked in 15 yrs – you ride the wind and surf as long as you can.
Caregivingly Yours, Patrick Leer
web site: caregivinglyyours.com
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