not just your everyday Saturday afternoon

"Pack Up Your Troubles in Your Old Kit-Bag, and Smile, Smile, Smile"

Saturday was not a MS friendly afternoon with temps sweltering at 94°F (34.4°C) and we had been invited to a graduation party by Patti’s niece and her boyfriend’s family.

First let me give a shout out to the Heckendorn family, your accessible home and hospitality ‘in our world’ was so much more than appreciated.

Uhthoff's Phenomenon seemed suspended as Patti was unaffected for almost 3 hours outdoors. Yes, her NMSS keck cooler helped plus the fan someone positioned near our table blowing gently across Patti  … frankly sometimes I gawked in disbelief.

Over the years these rare brief suspension of MS symptoms always create a MS time travel moment. Nothing changes Patti’s physical dependence but an ‘ascendant’ Patti engaged and enjoyed the party.

Even when feeding her I noticed MS dysphagia symptoms were asleep and not affecting chewing or swallowing.

When ‘MS speech’ finally broke through jumping into a pause in her brother’s toast … it was a sweet remark to make.

Personally finding a bowl of  'atomic fireballs' on the desert table was the pièce de résistance. 

Sometimes when lung cancer pushes multiple sclerosis up a hill, there is a smile waiting at the top.

-- 
Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

Uthoff’s Phenomena and summer fun with MS

As a caregiver it can be hard to shake the feeling that the person you care for is always better off when you are around.

Earlier this week I arrived at Patti’s care facility to take her for a push and roll and some dinner. Instead I was surprised to find her sleeping.

Reflectively I put my hand to her forehead to check for a fever. Her eyes blinked open, “I am trying to sleep because I feel like shit - I do not have a fever, you idiot man”. … Hi there and nice to see you too Patti!

Laughing I go get her a cup of ice and ginger ale with a flexible straw. Playing around with bed adjustments we settled in to watch the end of “Ellin” followed by “The Simpsons”.

Glancing above her bed I noticed the oversized room thermometer is near 80˚F(27˚C).  May is the time of year Uthoff’s Phenomena annually rears its pain in the butt head.

Opening her windows, her room cools rapidly toward 70˚F(21 ˚C), assisted dinning staff detours her tray to her room and I become her personal room service waiter as she enjoys eating dinner to the “The Simpsons.”

Living with MS as a family it’s not always about putting my hand on Patti’s forehead but checking the room and outside temperature.

Again, I would like to thank MultipleSclerosis.net for inviting me to share longer versions of our story: 

Uthoff’s Phenomena and summer fun with MS

Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

caregiving care giving care facility

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 

transfer, cluster headache, MS, et al

I believe I know why I write, but I was surprised at what people read the most according to Google over the last 12 months.

              

Caregivingly Yours Top 10

one-person transfer technique, the hug  (March 2010) … there was nothing explaining simply and briefly how to transfer someone by yourself. Associated You Tube video, wheelchair transferring Multiple Sclerosis caregiver, has been viewed almost 12,000 times. 

cluster headache: brain writhing on a corkscrew (May 2009) … originally posted two years ago this entry and associated cluster headache entries are read so regularly I created their own page on my web site cluster headaches 

a caregiver reflects on the R-Word (March 2009) … written two years ago as a commentary on spending of resources it’s seemingly grown cyber-legs.

hope, liberation, and CCSVI (July 2010) … any and all things CCSVI and MS are worth talking about

monster truck wheelchair shopping cart (August 2009) … adventures with inanimate objects seem to hold their popularity J

respite care: teen autism & special needs (August 2009) … daily search results landing on this entry 18 months later have again spawned its own page on CY web site, living with teen autism 

fondue with Uhthoff's Phenomenon / Multiple Sclerosis (April 2010) … I suspect both the nomenclature and story telling make this entry interesting for those searching for affect of heat on MS

Multiple Sclerosis parenting nature vs nurture (May 2010) … no matter how trying the present, the future always trumps. 

teen autism: diagnosis, a hitchhiker's guide (January 2010) … a simplified thumbnail has continuing appeal

midget albino cannibals vs pilgrims and Indians (November 2007) … written over 4 years ago, obviously the Internet is a strange and wonderful place. What kind of a search leads to this?

Caregivingly Yours began as and remains simply our story of trial and error learned lessons. When ‘sharing with’ meets ‘searching for’ in cyberspace - it can get interesting. 


Caregivingly Yours, Patrick Leer 
web site: caregivinglyyours.com 
videos: www.youtube.com/daddyleer 

fondue with Uhthoff's Phenomenon / Multiple Sclerosis

“April is the cruelest month.”  A week of freakishly warm temperatures, 90°F (32.2°C), has turned Spring helter skelter. 

Pollen drifting like desert sand may be hyperbole, but mowing my lawn twice before April 6^th is not! Even our cat stuck her tongue out at me! 

Now let us add Multiple Sclerosis to a Spring afternoon in our backyard … 

Chilled fruit fondue is a light, fun, and easy to eat meal for Patti. Bite size pieces of fresh cantaloupe, honeydew, and watermelon can be pre-set with toothpicks for dipping into peach yogurt (her favorite).  

Patti can ‘feed herself’ and I have found this dysphagia friendly in that for whatever reason the combination of fruit plus yogurt tends to encourage Patti to chew and taste her food before swallowing. Any meal with less prompting is a good meal. 

Add some cheese and crackers and you feel downright special. 

Enjoying being on our back patio doing our best impression of trendy I noticed Patti starting to slow and become disoriented, fruit was suddenly missing both the yogurt dip and her mouth. 

As I expressed concern, Patti growled back “I’m all f#cked up!” 

Uhthoff's phenomenon is in the house! A pseudoexacerbation associated with heat and Multiple Sclerosis, Patti’s eloquent, succinct description is right on the mark. 

For inquiring minds that need more detail - from MS Society of Canada:

Managing MS Symptoms: Uhthoff's Phenomena (Heat Intolerance) 

“Demyelinated fibers in the central nervous system can be very sensitive to even small elevations of core body temperature …Because these symptoms disappear with rest and cooling, they can be confusing … Heat induced weakness presents safety concerns for people with MS … they may find themselves too weak to extricate themselves …” 

Fortunately moving both Patti and our meal inside and cranking up the central air conditioning Patti rapidly stabilized as room temps dropped and we returned to enjoying dinner.

Multiple Sclerosis never misses a chance to pounce. 

Though long ago I never advanced beyond my Wolf Badge in Cub Scouts I have learned that when it comes to caregiving, (Winter, Spring, Summer, or Fall) “be prepared” is always good advice. 

Caregivingly Yours, Patrick Leer

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