Monday, December 26, 2011

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 

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. WhenI found that he had been paid six times my yearly salary to work for themanufacturers of those same drugs, my loss of faith was complete … having MS isdifficult enough. The last thing I needed was to worry about whether myneurologist 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 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 

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. 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 

Thursday, December 15, 2011

Girls Body Art And Hot Tattoos Idea

Girls Body Art And Hot Tattoos Idea

Girls prefer body art sexy tattoos that are more feminine, these girls tattoo designs delicate and pretty looking. About Body art girls tattoo design is not to say that women do not prefer something different. You will find a lot of women sporting more aggressive body art  tattoos designs on their bodies. There are a lot of women who think that large tattoos designs for girls are a real cool idea. Girls Tattoos not only look beautiful, every body art girls tattoo has a story to tell.

Girls Hot Tattoos Idea

Girls Tattoos or Body Art Girls Tattoo Designs symbolizes something that this tattoo design is closer to your heart and Girls Tattoos Body Art Girls Tattoo Designs which has a deeper meaning to it than what you see on the outside.Girls mostly prefer Flower tattoos designs,Girls butterfly tattoo designs ,Girls star tattoo designs ,girls body art tattoo designs wear on the parts like Arm, Shoulder, back and lower back to Girls Tattoos Body Art, Girls Tattoo Designs and preferred tattoo designs .

Tuesday, December 13, 2011

winter wheelchair tips for caregivers 2011

In a wheelchair Patti does not generate thesame body heat as a walking person. Cognitive impairment only adds to risk whenoutdoors in any weather.

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

While winter embraces all, it does demandcaregiver / carer respect. Our story is about Multiple Sclerosis however winterweather does not discriminate over diagnosis.
Lower body for a non-ambulatory person is mostvulnerable. 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 ofsocks, 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 becomea winter mainstay but its all-weather features have made it all year rain gear.

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

For outerwear we depend upon a hooded woolzippered cape. Capes are easier for getting on and off when assisting someonein a wheelchair and a zippered cape simply increases options. Hoods are easy toflip 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 warmtheven when it is wet.

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

Mittens ‘rock’! Rather than struggle to fit herfingers 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 

Saturday, December 10, 2011

Alien Tattoos Designs For Girls

Alien Tattoos for Girls, Alien tattooing, Alien  tattoos designs, unique tattoo designs for girls, Alien tattoos pictures for girls, Girls Tattooing, alien tattoo, tatau, Alien tattoos for girls, Alien tattoos for men, Alien tattoo for girls, girls alien tattoos art.
Alien Tattoos Designs For Girls
When Alvaro de Mendana de Neyra, the first European who landed on the shore of Maequesas in the eastern islands of Polynesia in 1595, he already saw the Alien tattooing patterns of Alien  tattoos designs which looks similar to a checker board that covers the whole body of a native Marquesan. These are one of the unique tattoo designs for girls ever in the range.Alien Tattoos for Girls, Alien tattooing, Alien  tattoos designs, unique tattoo designs for girls, Alien tattoos pictures for girls, Girls Tattooing, alien tattoo, tatau, Alien tattoos for girls, Alien tattoos for men, Alien tattoo for girls, girls alien tattoos art.
He was surprised to see that the natives were covered with Alien tattoos pictures for girls in almost entire part of their bodies. Girls Tattooing was called tatauing then, and alien tattoo flash was termed tatau in marquesan language. That’s a good concept of Alien tattoos for girls and Alien tattoos for men.
Alien Tattoos for Girls, Alien tattooing, Alien tattoos designs, unique tattoo designs for girls, Alien tattoos pictures for girls, Girls Tattooing, alien tattoo, tatau, Alien tattoos for girls, Alien tattoos for men, Alien tattoo for girls, girls alien tattoos art.
The Alien tattoo for girls gallery played a major role in the culture of Marquesas, and their girls alien tattoos art were typically associated with aesthetic, political, social and economic aspects of their life.

Wednesday, December 7, 2011

Baby Tattoos Designs

The Worst Baby Tattoos Ever
This can deeply hurt you if you're planning to imprint your baby's tattoo on your body. This idea seems to me a bit awkward as the baby looks completely different in almost all the pics below.
Check out 10 more worst baby tattoo pics after the jump.
The Worst Baby Tattoos Ever
The Worst Baby Tattoos Ever
The Worst Baby Tattoos Ever
The Worst Baby Tattoos Ever
The Worst Baby Tattoos Ever 

The Worst Baby Tattoos Ever

The Worst Baby Tattoos Ever
The Worst Baby Tattoos Ever 

The Worst Baby Tattoos Ever

Monday, December 5, 2011

The Dark Side of Oz

Two top-notch classics from different generations melding together. This is beyond amazing. It's an unexpected gift from the Universe. Well worth your time.


Time for a little update as our job saga continues...

A few entries back, I wrote about a temporary break in the job crisis.  Aaron had found a short term consulting gig at a decent rate of pay which would tide us over through the end of the year.  It was a DISASTER!  The company owner (L) was an absolute lunatic...a madman.  Aaron was not there a week when the marketing director came to him and told him that he was leaving on Friday with no notice.  He could no longer take the bosses tirades.  Here are the bullet points of the nightmare...

- Small company is owned and run by L

- L's live in girlfriend is second in command.  She has no particular background that makes her a great person for this position.

-L and girlfriend have frequent screaming fights in the office

-L's parents spent lots of time in L's office, just hanging out.  L is a man in his 50's.  L fights with his parents the way he fights with the girlfriend.

-L "knows it all".  A meeting with L to share input, observations or advice turned into a session where L told you all the reasons you didn't know what you were talking about.

-L changed your job description on a daily basis so you could not focus on making progress

-L was frequently out of the office.  L had a stroke 2 weeks before he contracted Aaron.  This was one reason that Aaron was brought in.  L is so crazy he's killing himself.

-L had a history of getting frustrated that people were not doing what he expected (even though he could not define what was changed day to day) and firing them.

Needless to say, Aaron was miserable.  He was trying to give L what he wanted and L would rip him a new one.  One day he came home and told me that he and L had had a red faced screaming fight.  Several times Aaron came home at the end of the day desperate to terminate the contract.  He hoped to be fired.  He'd tell me "it wasn't working out for either of them".  My response was....this wasn't about "working out" as far as we were concerned.  This was not a career move.  This was a paycheck....period.

He stuck it out....until L decided Aaron wasn't working out.  L called him in to terminate the contract and Aaron graciously acknowledged and agreed it was the right move.  Apparently L was STUNNED that Aaron took it all so well.  All in all, the job lasted about 8 weeks out of the expected 16.

So, we are back to being jobless.  He has one opportunity which is a good one.  He's a very strong candidate but not "the perfect guy".  They have been looking for Perfect Guy since January.  It's an executive position that they've had filled with an interim person and they're in trouble with that because he doesn't have the management skills to run the department.  Aaron has those management skills but he's not an expert in the technology.  They seem to be focused on getting someone with the very specific technical background and strong management experience, and they can't find that person.  It's time for them to hire my husband!  :)  I am sending my daily messages to the job gods.

The job is in California but we are not even talking about the logistical problems involved (House we can't sell, child with a year and a half of high school to go).  We're just hanging onto every hope that he gets this job, then we'll worry about all the details.  It will probably mean a long term bicoastal situation.  Doesn't matter, he needs a job.

By the way, Aaron had a communication recently from someone who is still at L's company.  He was making sales contacts and forwarded to Aaron an email conversation between himself and a potential client.  Upon making the pitch, the clients asked if L was still the CEO.  His response to learning that L was still there was "I will not do business with that schizophrenic asshole!"  Kind of sums it all up right there....

I also mentioned a photography job that I was pursuing.  This has turned into a big run around as it is a county civil service position.  About 1000 people have to handle my paperwork and things continue to go missing along the way.  I have spoken on the phone a number of times to the woman who would ultimately be my superior and she seems very interested in hiring me.  There's just always another hoop to jump through or something that they can't find or don't have.  My 30 year old college transcripts?  For a part time photographers positions?  When I supplied a copy of my diploma?  REALLY?  OK.......

I'm still hopeful that this will work out but it may be months.