Multiple Sclerosis Caregivers 2012

Last Fall MS caregivers throughout the US, including myself and readers of Caregivingly Yours, participated in a research study about Multiple Sclerosis caregiving.

The results of that study were published last month in a 62 page report available on line in PDF format at:

Multiple Sclerosis Caregivers March 2012

Conducted by National Alliance for Caregiving, National Multiple Sclerosis Society, Southeastern Institute of Research and supported by Sanofi US.

Block out some time, get yourself a cup of coffee (or favorite beverage) and discover statistically who we are, what we do and how we each stand in the new idea of normal. 

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer 

mooned by snails

An evening of modern hunter-gatherer bonding is a change not a chore for Patti.  Errands can make for a pragmatic and fun outing in the care facility era of living with Multiple Sclerosis.

          

Daily knee contracture therapy has so improved the ease and safety of transferring Patti we decided on some winter scootering at Walmart.

Visual impairment (legally blind) and navigating an aircraft carrier sized electric scooter is always interesting especially with small children darting between aisles like deer scampering across the highway, or colliding with shoppers with their faces in smart phones.

MS fatigue is always the trump card and began to ripple through other MS symptoms of attention, memory, and eye hand coordination. The scooter began to crawl forward ever slower.

I try to keep a running banter going masking verbal cues with conversation. Sometimes it goes astray. “Patti you are driving so slow -  some snails just passed us - stuck their hideous naked butts out of their shells - and mooned me!”

We lost all forward progress as Patti dissolved into uncontrollable laughter, in intensity and volume. Walmart might consider adding a ‘laugher’ along with their ‘greeter’. Soon not only were other shoppers passing us and smiling but starting to laugh also.

Once settled down, she seemed re-energized and we were picking up speed toward check out. … So why couldn’t I just keep my mouth shut?

“Patti, you are doing great! Keep rollin’ I see the snails up ahead. When we pass them, slow down, so I can 'drop trou' and get them back.”

With a screech of laughter she let go of the control - the scooter stops abruptly and Patti shaking with laugher starts to slide out of the scooter. Literally she would have been ‘rolling on the floor laughing’ if I had not caught her and straightened her laughing non-ambulatory self back into the seat.

EDSS>8 and ADL<1 may be quantitative measurements of Patti’s living with Multiple Sclerosis - but quality of life or wellbeing is another story and well, sometimes it takes a little help from those damn snails. 


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

activities of daily living / child of the north wind

While a snow storm may temporarily inconvenience “the things we normally do in daily living” imagine your personal activities of daily living (ADL) slipping out of your control permanently.

Multiple Sclerosis is a relentless and random thief of one’s abilities to perform ADLs. There is no thawing change in seasons.

Maybe it is because winter and snow have always been energy sources for both Patti and I that the unfairness of MS seems more outrageous.

Patti was an avid skier and with her long term memory more vivid these days than her short term memory well snow storms trigger recollections of slopes of powder. All the more I wanted to rail at the heavens when I went to pick her up for our pre-blizzard outing and watched her needing the assistance of three aides plus a Hoyer lift and sling to get out of bed, changed, and dressed.

Instead I found strength from her good spirit and laughter through it all. No lift tickets these days but instead a wheel chair accessible smoking lounge on wheels.

Heading back home it was time for me to take on Winter. Since Punxsutawney Phil saw his shadow on Groundhog's Day, 40” (1.02 m) of snow has fallen on our little piece of the Earth.

Piles of shoveled snow plus drifts are getting rather epic. Media talking heads claim we have more snow than the Vancouver Winter Olympics.

Conditions were so bad on Wednesday birds took shelter in our lilac bush shielded from blizzard winds.

While I battled to keep the driveway clear, township snow plows arrived as the storm was kissing us good bye. Trying to maintain our tradition of picking Patti up for a post storm outing I was foiled as Pennsylvania closed three major Interstates, which in turn transformed secondary roads into parking lots.

Alas! At least as a fellow child of the north wind, Patti knows that sometimes the mountain wins.

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

disability 'dashboard' gauges Multiple Sclerosis

Take a glance below at the image of Patti’s Multiple Sclerosis dashboard disability gauges.

EDSS gauge reflects Kurtzke Expanded Disability Status Scale (EDSS) a method to quantifying disability in Multiple Sclerosis from 0 = normal neurological exam though 10 = death due to MS.


ADL gauge refers to the Modified Barthel Scale to measure performance in basic Activities of Daily Living (ADL) from 100 = independent through 0 = totally dependent on others.


Running on empty might be a fair observation, though it would be both correct and incorrect.


Why should the victories and experiences of those who have progressed beyond independence fade into shadows or become invisible?


Too many stories of people with MS fade away or disappear as MS progression takes away the ability to tell their own story.


Stories do not end with independence they evolve as here in Caregivingly Yours, the caregiver blogs linked on this page and more out in the blogosphere. Those who care … caregiver, carer, spouse caregiver, family caregiver, well spouse, family, friends, aides or whatever become part of their story.


Pictured below are the exact same MS dashboard disability gauges just from a different view.

Behind this picture was support and care. It took multiple aides plus a lift at Patti’s care facility to get Patti up, transferred, washed, and dressed. I transported her in our wheelchair accessible van, assisted her with eating, and pushed her through the streets to the captured moment in time. In spite of heat, humidity, and dependency Patti supplied the intangible … her spirit.

While Multiple Sclerosis steals the body and mind, piece by piece, from the person diagnosed with MS it also steals THEM from YOU. Everyone changes.

Does everyone evolve? Isn’t that answer really up to you?

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