reindeer flying drunk vs MS

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

After physical and neurological examination sheappeared OK and had no complaints nor remembered anything. Of course MultipleSclerosis related memory loss, Patti’s MS short circuiting of pain neurotransmittersand 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 andevaluation. After a couple hours – a bruise beginning to develop on her kneewas the only observable concern.

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

All things considered, in fact, Patti wasfiring on all cylinders right through the day. Patti never gets up as early as7 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 inChristmas Day festivities .

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

You got to love it!

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

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

disability perspective / MS

Q ...What is a disability perspective?

A ... disability perspective is a viewpoint that considers the needsand 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 ofit.  “Christmas by the Lake” hosted bythe Boiling Springs High School Alumni Association could not have been a moreenjoyable winter outing.

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

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

Our push and roll around the lake was mesmerizing with hundreds ofreal luminaries plus a fully lit Christmas Tree floating in the lake. Patti inher wool cape, mittens, hat and buggy bag wheelchair lap blanket declared shewas “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 streetfor a block, the reflective strip on Patti wheelchair lap blanket shone like abeacon in the lights of approaching cars.

Christmas music filled the air, Santa roamed about ho ho hoing and chestnutsand 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 hotchocolate and cookies but that was ‘no problemo’, they were delicious.

Horse drawn carriage rides were also available but we did notexplore as rarely are they easily accessible and Patti could care less - shealready 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 theircaregivers and families and you are talking about a quarter to a third of anycommunity’s population.

Including disability perspective into news or promotions is notabout political correctness, it is inclusive and welcoming to people of allabilities.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

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. Ouryoung daughter, along with all the children, was invited up to the altar totalk about Bhristmas. Long story made short the kids were asked about Christmaslights. When Megan offered purple, the minister corrected her pointing out thereis no such thing as purple Christmas tree lights.

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

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

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

Holidays are a good time for common denominatorexamples. ‘Normals’ put a tree in a stand and admire, while living with MS you discoveryou need to secure the Christmas tree as stable as a grab bar. Patti has pulledmore than one tree down on herself while trying to be involved. For years I securedour conventional tree stand to a square of 3/4” (19 mm) thick plywood. Severalyears ago I simplified and bought a 30 lb (13.6 kg) steel stand with a leg spanof almost 3’ (.9 m) made by Bowling Enterprises of Bear Lake, MI.

Being no longer able to stand, legally blind, failingeye hand coordination, and down to use of only her right arm - were you tooverhear our ‘assisted’ decorating you might be surprised at the laughter ofinvolvement.   

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

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

Christmas Shopping Then and Now

There was a time, a lifetime ago, when I was ready for Christmas before Thanksgiving. As a single mother with two boys, I was always on the look-out for bargains. I bought things throughout the year, and my brother was overseas so I had to have packages wrapped and mailed long before Thanksgiving was even on the horizon.

When the Christmas season was in full swing and the malls were all decorated, I had already finished my Christmas shopping. I would visit the malls and they were so beautiful and now so memorable. I wasn't desperately searching for gifts so I wasn't rushed. I could appreciate the imaginations and budgets of the stores' talented decorators. Fairyland was all around. Carols were playing in the background, families were shopping, laughing, arguing, both kids and adults were making decisions, rushing from store to store. One mall's ice rink displayed skating talents and costumes and more laughter. I live in the Dallas area so I could enjoy Neiman Marcus at its best. Chrirtmas was in bloom. What a great way to share the feeling of Christmas.

(read more)

technorati tags: downthemspath, christmasshopping, holidaystress, blackfriday, cybermonday