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 6 PM.

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  


  1. Peace Be With You

    "you ride the wind and surf as long as you can."



  2. I learn something new everyday ...finally what my sister experiences in the heat has a name - Uhtfoff’s Phenomenon. I wish more people understood that just getting out of the heat isn't enough for many PwMS. Thanks for this post!

  3. I have heard this with other people with MS and the profound changes during the hot summer months; yet one cannot relocate to a more temperate climate at the drop of a hat. It is fascinating why the heat has such the impact that it does. Your attitude to ride the wind and surf as long as you can is certainly a commendable one, as hard as it might be to do. (but if you lived closer to the beach, it could be more manageable, and the weather here is really so very pleasant compared to other summers we have endured). But relocating Patti 3000 miles doesn't seem doable, so you do what you can do and that is trying to work with what you have to work with the best you can.

    In saying that, taking a bit of a blog break. Too many hours of working and not getting enough sleep with reading blogs, so taking some time off; I'll check in when I can; but in the meantime, take care of yourself and Patti, Patrick!


  4. sailing safety clarification ... Patti and I both had life jackets on prior to that picture being taken after we beached our catamaran. When sailing I am a total Captain Bligh about life jackets.:)

  5. Your story is so touching. You seem like such a caring and dedicated person. Your wife is so incredibly lucky to have you.

    I work with an organization, Good Days from Chronic Disease Fund, and we work with chronic disease patients by helping them find the medical care they need at an affordable price.

    Your support for our organization would help us, help so many.



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