Monday, December 26, 2011

reindeer flying drunk vs MS

Memories of Christmas morning broke new ground this year with a phone call from Patti’s care facility that she had been found on the floor next to her bed about a half hour before dawn.

After physical and neurological examination she appeared OK and had no complaints nor remembered anything. Of course Multiple Sclerosis related memory loss, Patti’s MS short circuiting of pain neurotransmitters and probable shock confounded examination.

Incoming day shift found her during 7 AM ‘observation’. Overnight shift reported her asleep in bed at the previous hour’s 6 AM check.

Nursing staff wanted to keep her up and alert, just in case (some kind of concussion protocol), and on priority monitoring and evaluation. After a couple hours – a bruise beginning to develop on her knee was the only observable concern.

Continuing with plans to pick Patti up for Christmas Day with family still seemed the best of possible ideas.

All things considered, in fact, Patti was firing on all cylinders right through the day. Patti never gets up as early as 7 AM and has not gone without at least one mid-day nap for at least a decade. She was beyond impressive for someone who began the day falling out of bed, participating with over a dozen family members in Christmas Day festivities .

After about the umpteenth time of pestering her if she remembered anything about how she ended up on the floor - she turned to me while riding in the van and said, “the damn reindeer were flying drunk.”  

You got to love it!

For the First Day of Christmas, I do know that Patti is getting the return of two bedside fall mats and that beginning last night her high-low mechanical style bed will be lowered to as close to the floor as possible when sleeping, about a foot (30.48 cm) off the floor.

Caregivingly Yours, Patrick Leer 

Tuesday, December 20, 2011

no one can serve two masters / MS meds

from today’s Washington Post:

“…I knew that I had felt pressured by him to take medications. When I found that he had been paid six times my yearly salary to work for the manufacturers of those same drugs, my loss of faith was complete … having MS is difficult enough. The last thing I needed was to worry about whether my neurologist was acting in my best interest…”

Caregivingly Yours, Patrick Leer 

Monday, December 19, 2011

disability perspective / MS

Q ...What is a disability perspective?
A ... disability perspective is a viewpoint that considers the needs and aspirations of disabled people and their families.

I offer as an example a tale of two stories...

“Christmas By The Lake” Boiling Springs, PA
When surreal becomes real, you’re just glad you were part of it.  “Christmas by the Lake” hosted by the Boiling Springs High School Alumni Association could not have been a more enjoyable winter outing.

Upon arriving we found wheelchair van accessible parking available in front of Appalachian Trail Conservancy.

Lowering our van ramp we found ourselves also in the staging area of the Pioneer Girls (a variation of Girl Scout Daisies) and parents. Our ‘transformer’ van quickly became show and tell to young inquiry minds who in turn shared with us all their exciting adventures lighting the luminaires. We laughed and smiled as the curious ‘heart of childhood’ embraced differences so honestly and innocently.

Our push and roll around the lake was mesmerizing with hundreds of real luminaries plus a fully lit Christmas Tree floating in the lake. Patti in her wool cape, mittens, hat and buggy bag wheelchair lap blanket declared she was “quite toasty” in spite of a ‘real feel of 29˚F (-1.6˚C)’.
When we needed to abandon the path and use the side of the street for a block, the reflective strip on Patti wheelchair lap blanket shone like a beacon in the lights of approaching cars.

Christmas music filled the air, Santa roamed about ho ho hoing and chestnuts and marshmallows were available for roasting over a fire pit.  Everything was free including hot chocolate, hot dogs, and Christmas cookies. MS symptoms of dysphagia restricted us to hot chocolate and cookies but that was ‘no problemo’, they were delicious.

Horse drawn carriage rides were also available but we did not explore as rarely are they easily accessible and Patti could care less - she already has me, her trusty one-man open sleigh horse.
Now the same event as reported by mainstream media … Lights line the lake in annual Boiling Springs event
12% of Americans are affected by disability, add in their caregivers and families and you are talking about a quarter to a third of any community’s population.

Including disability perspective into news or promotions is not about political correctness, it is inclusive and welcoming to people of all abilities.

Caregivingly Yours, Patrick Leer 

Saturday, December 17, 2011

dreaming of a purple Christ…MS

Decades ago, maybe even the last time Patti ‘walked’ into a church, we had a Christmas tree lit with all purple lights. Our young daughter, along with all the children, was invited up to the altar to talk about Christmas. Long story made short the kids were asked about Christmas lights. When Megan offered purple, the minister corrected her pointing out there is no such thing as purple Christmas tree lights.

A harbinger of what she would face in school when teachers would mis-teach Multiple Sclerosis either working from out of date textbooks or sharing mild MS as an example.

It would not be until her senior year of high school that Megan actually had a teacher who personally knew what growing up living with severe MS was about. She, like Megan, had spent her youth with a Mom in a wheelchair dependent on others.

Lack of awareness by others is part of living with MS as a family, affecting not only the mysterious diagnosis but equally significantly the daily life of all family members.

Holidays are a good time for common denominator examples. ‘Normals’ put a tree in a stand and admire, while living with MS you discover you need to secure the Christmas tree as stable as a grab bar. Patti has pulled more than one tree down on herself while trying to be involved. For years I secured our conventional tree stand to a square of 3/4” (19 mm) thick plywood. Several years ago I simplified and bought a 30 lb (13.6 kg) steel stand with a leg span of almost 3’ (.9 m) made by Bowling Enterprises of Bear Lake, MI.
Being no longer able to stand, legally blind, failing eye hand coordination, and down to use of only her right arm - were you to overhear our ‘assisted’ decorating you might be surprised at the laughter of involvement.   

Purple is not only Patti’s favorite color but a combination of contradictions, hot red and cool blue. Perhaps not traditional Christmas but then again living with MS as a family we jumped that traditional track long ago.

Caregivingly Yours, Patrick Leer 

Tuesday, December 13, 2011

winter wheelchair tips for caregivers 2011

In a wheelchair Patti does not generate the same body heat as a walking person. Cognitive impairment only adds to risk when outdoors in any weather.

Speculating on how fast it takes for hypothermia to set in is a fools’ question. … Prepare!

While winter embraces all, it does demand caregiver / carer respect. Our story is about Multiple Sclerosis however winter weather does not discriminate over diagnosis.
Lower body for a non-ambulatory person is most vulnerable. Last winter was a benchmark when we received a gift of a buggy bag® wheelchair lap blanket. All the time and stuff involved such as layers of socks, leg warmers, boots, and blankets disappeared. It’s almost like the BC / AD line in our history of winter living with MS. Not only did it quickly become a winter mainstay but its all-weather features have made it all year rain gear.

It’s easy to say “wear several layers of loose-fitting clothing”. However when someone is unable to dress themselves this can get beyond interesting. A sense of humor is most helpful. 

For outerwear we depend upon a hooded wool zippered cape. Capes are easier for getting on and off when assisting someone in a wheelchair and a zippered cape simply increases options. Hoods are easy to flip up or down, cover everything except the face and are always attached. While wool is ‘old school’ it still has the unique ability to provide warmth even when it is wet.

While a hat and scarf are often recommended I have concerns about mixing scarves and wheelchairs, though I have learned of the ‘infinity scarf’ for those wanting style without the ends that could catch in wheels. Hats work OK but are easily misplaced and can create some serious ‘electric hair’ styles.

Mittens ‘rock’! Rather than struggle to fit her fingers into gloves Patti just slides her hands into warmth.

Most importantly remember your carer / caregiver self especially your foot wear on snow or ice-covered sidewalks, ramps, driveways, etc. Fashion is arbitrary, falling is unacceptable.

Being prepared separates ‘disability forced hibernation’ from enjoying winter to its fullest!

Caregivingly Yours, Patrick Leer 

Friday, December 09, 2011

National Multiple Sclerosis Act of 1949

“But to watch someone close to you become a hopeless, helpless paralytic and to know that medical science is powerless to halt the progress of this disease, is something no person should be called upon to endure” 

“May 11, 1949 Washington DC – Mrs. Lou Gehrig, blue eyed widow of baseball’s “iron horse” urged Congress yesterday to finance a campaign against Multiple Sclerosis which cut down her husband at the peak of his fame.

Several victims of the crippling malady sat in wheelchairs listening …”

Republican Senator Charles Tobey of New Hampshire, whose daughter had MS, sponsored the bill. Tobey declared, “We cannot take this thing laying down. There is enough money in this country to take care of this job. … God will hold us responsible unless we try to do something for them.” Emerging Illnesses and Society: Negotiating the Public Health Agenda” by Randall M. Packard 

National Institutes of Health (NIH) opposed the formation of a separate institute for MS and the legislation never passed. Instead the idea was folded into a then unfunded directive to the Surgeon General to set up a National Institute for Neurological Diseases and Blindness and the National Institute for Rheumatism and Metabolic Diseases.  

It’s interesting that media reporting of 62 years ago interchanges MS (Multiple Sclerosis) and ALS (Amyotrophic Lateral Sclerosis) especially since ALS would become known colloquially as ‘Lou Gehrig’s Disease’. Then again public awareness remains a problem.

Most of all I am struck by the loss of moral imperative in approaching disease. Then a nation that not only believed “in God we trust’ but “God will hold us responsible unless we try …”

Caregivingly Yours, Patrick Leer 

Saturday, December 03, 2011

losing my mojo / MS caregiver

Putting up this year’s Christmas decorations I was struck by how much I’ve lost my mojo through 22 years of Multiple Sclerosis spouse caregiving.

Medical science monitors progression of an illness or disability but ignores that the family also progresses. Then again how do you measure downward economic and social mobility? How do you measure a childhood sacrificed? How do you measure the physical and emotional toll of choice? How can you even explain it when you put ‘care’ before all the other understandable motives such as life, liberty, and the pursuit of the happiness of career, income, and all the trappings of normal life? … How do you measure the loss of a caregiver’s mojo?

The following 20 second video captures what our yard looked like at Christmas time in the earliest years of juggling MS caregiving and basically single parenting.
Believe it or not that’s even scaled down from my pre MS caregiving lawn decorations. Whether you are a fan of excessive Christmas decorations or not, what is important is it was ‘me’ – I enjoyed it I - my mojo was running on full throttle.

Pictured below is now – two decades later …
While my blow mold plastic may be considered vintage to some, I’m quite sure I’m hearing polyethylene whispers about losing my mojo.

Caregivingly Yours, Patrick Leer 

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