hidden symptoms of MS

MSAA (Multiple Sclerosis Association of America) has IMHO an excellent article in their Winter/Spring 2013 "The Motivator
…

The Hidden Symptoms of MS

Managing the symptoms that those around 

you may not easily see or understand

Along with stories on Pain with MS, Coping With Fatigue, Sleep Issues, Cognitive Changes and Visual Problems. MSAA Winter/Spring 2013 is one of the best I’ve read

In our story, hidden or ‘invisible’ symptoms were not really a factor except to isolate from the beginning any kind of support groups for Patti because others with MS were about as different as those without MS.

I appears if you do not receive their twice annual magazine then you can download a PDF version from the MSAA 'Motivator' web site.

Patrick Leer

Health Activist:

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

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

Multiple Sclerosis is exhausting

Unquestionably MS caregiving is both physically and emotionally demanding and exhausting … but “living with MS” itself now that is the ‘mother of all’ exhausting, like having a tank looming over you just waiting to run you over.

A fellow MS caregiver blogger whose spouse has also progressed to the care facility era of Multiple Sclerosis recently shared a touching entry, Too Tired for Lunch.

“We were supposed to be going out for lunch today … But when I arrived he was still in bed and sound asleep … he woke up but still groggy, and said he didn’t want to go anywhere…”

Reading Barb’s entry I was reminded of how many times I arrive to find Patti in one variation or another of “I just want to sleep”.

When this happens in late afternoon (our usual outing time) I just hang out while she sleeps, use the opportunity to track down physical therapists etc, or catch a little tube with Patti, and help out by feeding her dinner in bed, etc.

None of which I confess tends to make it into many entries to this journal. I am guilty of wanting to share our successful adventures more than when MS wins. In reality a whole lot of both 'living with MS' and MS caregiving is about being “too tired”.

Even when out and about, every outing has its breaking point when that tank of MS fatigue rolls right over Patti.

Monday I had Patti home for another caring and the culinary arts experiment using haddock tenders and shoestring french fries for finger food friendly fish and chips. While the culinary experiment went quite well I was also in these cooler Fall temps trying to stretch the outing as a kind of training exercise for upcoming October Halloween parades.

Trying to guesstimate when that MS fatigue breaking point will happen and getting Patti ready for bed just before it hits is the never ending ‘art of MS caregiving’.

Patrick Leer

BLOGS:

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

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

multiple sclerosis 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 

through MS 'symptom D' glasses

Not unlike 3D glasses at theatres sometimes it’s easier to ‘see’ living with Multiple Sclerosis when moments in time such as an outing to the movies are viewed through “symptom – D” glasses.

Getting ready is all about non-ambulatory which means transfers and assistance with dressing and changing Depends. Incontinence is best understood in terms of continence. How often do you visit the commode? Now just replace the word commode with - transfer from wheelchair to bed, change Depends, and transfer from bed to wheelchair.

Once ready to go, it’s onto wheelchair accessibility.

Considering all that’s involved with optic neuritis, I have my suspicions about 3D glasses, though this outing is 2D and visual impairment is more about proximity of accessible seating to the screen.

Whether jerky or simply lack of muscle coordination, spasms and/or spasticity means no bucket of popcorn goes on Patti’s lap. I hold the popcorn between us resting on her wheelchair rim.

Most dangerous of symptoms is dysphagia. Short circuiting of the muscles involved in swallowing can equal choking under the best of situations. Sitting in the companion seat at a theatre is the equivalent to the lifeguard chair at the beach.

Unlike garden variety fatigue, MS fatigue is more severe, a sudden lassitude.  In Patti’s case the odds increase as the day wears on, therefore matinees are preferred over evenings.

Sometimes you get a cocktail of symptoms. Dysarthria is all about the short circuiting of nerves controlling the muscles involved in speech. Pseudobulbar affect is all about inappropriate laughing/ crying.  In other words there is no way Patti is going to turn to me and ‘whisper’ something about the movie. More likely she may abruptly and unintentionally loudly interact with the movie dialogue.

Here again less attended matinees are helpful though I confess I’ve grown to enjoy Patti’s interactive MS dimension to the movie going experience.  

Ahhhh and alas there is always memory loss. Tucking Patti into bed at her care facility after our outing to see “Rango”, the nurse asks her where she went. “To dinner at my parent’s house!” J

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer

Mother's Day 2010

With lilacs scenting the morning breeze I sipped the morning’s first cup of coffee and greeted the day.

J & T were in Boston preparing for their on-the-road  Mother’s Day living with teen autism.

I dialed Patti’s care facility. People are never carry-out. Calling ahead to any care facility is a courtesy, especially if I want to hope that they can find the time to get her up, changed, and dressed. Most often they can however sometimes the physical home caregiver skills come out of moth balls.

Once we resolved her first cigarette she was one Mother who was ready to roll.

Big family meals can be choking risks for Patti, all the conversation and distractions magnify MS related swallowing challenges and dysphagia. However a little cozy 'assisted' dinning aside with “moi” safely resolved eating and maximized socializing.

Family time with her parents, siblings, our daughter, and cousins was both enjoyable and exhausting for Patti. Drawing on more heart and effort than most mothers and daughters, sooner than later MS fatigue kicked in and all Patti wanted was to take a nap.

With the dinner hour looming, I worried that the clock might work against her. Fortunately short staffing in the assisted dinning room meant Patti would be fed in her room when she ‘wanted’. A good long nap and her dinner tray when she wanted was a Mother’s Day godsend.

As for me … well I went home and opened a special book. Once upon a time, my Mother gave me a book of poetry I never even opened for over 20 years, and years after she had died. To my wonder, throughout the book, I found handwritten notes from her in the margins of poems such as, “If I could have written something, it should have been this”:

When I hear you laugh, more softly now, I remember

The excitement and inflection of a happy child

To see you grown suddenly, unmistakably older, saddens me

But I know that somehow beyond all words, beyond

Time and pain and the mystery of death

We will walk again amid the flowers of spring

........................................

"Whatever else is unsure in this stinking dunghill of a world a mother's love is not." James Joyce

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Multiple Sclerosis & Family: Mother's Day

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 

videos: http://www.youtube.com/daddyleer