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  

videos: www.youtube.com/daddyleer 

fun times off the sidewalk

Long term care certainly needs a toolbox of resources such as in the upper right hand corner of this blog. Yet in reality, eventually you both are going to find yourselves where the sidewalk ends and accepting that long term care becomes more about connecting the dots between moments in time.

When playing in the snow becomes more wheelchair friendly through a gift of a Buggy Bag wheelchair lap blanket from one friend then that snowballs into a unexpected visit when another friend who happens to be driving by the park pulls over. Children of the North Wind seem to find each other.

Watching Patti laugh so hard that tears run down her face and she can barely catch her breath transcends a movie outing. To be able to quip in my best Robert Di Niro impression, “Are you ready to be the god focker?” for days afterwards and watch Patti dissolve into laughter, I could hug the writers of “Little Fockers” and of course Patti's brother for the gift of movie passes.

Sure I could discover a wheelchair smoker’s apron but when a friend sends a gift of packets and packets and packets of exotic flavored hot chocolate,  well … there is simply no place that can compete with home right now for Patti’s favorite wish for ‘a ciggie and a hot chocolate’.

Yes, and even after all this time sometimes I still stumble into awkward moments. Picking Patti up from her care facility for an outing she was still wearing her knee orthoses for MS knee contractures and fuzzy socks. Removing the orthoses while talking out loud to myself I remarked “we need to get some shoes on, in case” and paused. Realizing both how dumb my ‘in case’ was and how long the pause was extending I could only sheepishly smile up at Patti. We both laughed as Patti completed my sentence, “in case I want to kick somebody” and agreed fuzzy socks were just fine.

Moments in time are the why. And why is the keystone of caregiving.

It is not impossible to dream that where the sidewalk ends you will find a little help from your friends.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com
videos: www.youtube.com/daddyleer 

wheelchair smoker’s apron

Multiple Sclerosis is a thief. Stealing abilities crushes choices. Whether good, bad, or indifferent – choices are part of quality of life.

I am not a big fan of jackbooted caregiving so I try to find safe paths even when a choice may not be the best.

Smoking is just such a potentially hazardous choice. Beyond the health risks of smoking, there is the clear and present danger from progression of Multiple Sclerosis physical and cognitive symptoms that Patti may drop a lit cigarette or hot ash on herself.

Enter discovery of the smoker’s apron, constructed of flame retardant fabric much like fibers used in fire fighter’s suits. 

While certainly not a substitute for supervision it does improve safety and I do not have to actually sit there and stare at her while she smokes. Win-win scenarios no matter how small or strange are rare in caregiving.

Speaking of thieves, MS is not the only thief out there. Some medical equipment and homecare supply companies sell the identical product, brand, and model for as much as 3X what you can purchase it for through on-line retailers such as amazon.com

When MS has stolen so much from Patti, if she wants a ‘ciggie’ now and then so be it; if having a ‘ciggie’ can be made safer then even better.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com
videos: www.youtube.com/daddyleer