Sunday, July 25, 2010

fall of the wall of exclusion

“Let the shameful wall of exclusion finally come tumbling down...” President George H. W. Bush

Monday, July 26th will mark the 20th anniversary of the signing of the Americans with Disabilities Act.
Pictured surrounding President Bush are the mother of a disabled child, a man who lived professional discrimination, an activist heir, and a religious leader who would accept the pen from President Bush with his foot because he was born with no arms.

Seated (l-r) Evan Kemp (1937-1997) Justin Dart, Jr (1930-2002). Standing (l-r) Rev. Harold Wilke (1914-2003) Sandra Swift Parrino (1934-).

Their lives of passion and commitment for the rights of others brought us all to the beginning.

No, that 1990 legislation was not perfect. Nor, today, is society barrier free, but it is unquestionably better.

Barriers can be problematic to recognize unless you are affected by them. Just because you do not see them does not mean they are not there. It really is a simple truth.

While this personal anecdote below is only social it does capture the difference in 20 years of ADA as told as a tale of two restaurants …

In our earliest years of living with Multiple Sclerosis as a family, a restaurant owner actually told me he did not need the business of people in wheelchairs. Modifications would cost him money. Were crippled people going to pay for his costs? Come back when my wife could walk.

Last week going out for dinner for our wedding anniversary with the push of a button accessible doors swung open to welcome us. Several tables in the dinning room were designed a few inches higher so wheelchair patrons could effortlessly slide under. No fuss over accessibility just good old fashioned hospitality for ‘all’.

On the part of one family, gazing back through a photo of a moment frozen in time -  thank you!

Caregivingly Yours, Patrick Leer 
musings: patrick ponder

Friday, July 23, 2010

Jersey Shore “Old School”

Caregiving is about control. Well, really about trying to control what is uncontrollable. Getting up every day and running repeatedly into that proverbial brick wall.

Yesterday I escaped on a pilgrimage to the Jersey Shore for a day trip of boogie boarding / body boarding and visiting with relatives on the beach at Stone Harbor.  

Facing Mother Ocean you wait preparing to wrestle with the sea. Talk about trying to control the uncontrollable.

Yet there is incredible ‘restoring’ in this visceral, physical contact with the surf, at the risk of hyperbole, a synergetic experience.

Maybe it has something to do with a shared ethos or simply a refreshing though necessary reminder that some power greater than any caregiver is always in control.

Philosophy aside and more than surf and seagulls the Jersey Shore is about people and childhoods.

Somewhere in those grains of sand and time is my own childhood.

While the Jersey Shore certainly can refresh and perhaps even teach, above all it embraces.
Caregivingly Yours, Patrick Leer 
musings: patrick ponders 

Tuesday, July 20, 2010

25th wedding anniversary

“Who knows what tomorrow brings …

1985 - wedding
1988 - Megan is born
1989 - MS home caregiving era begins
2004 - MS care facility era begins
2009 - 20th anniversary spouse caregiving
2010 - 25th wedding anniversary

... the road is long."

Caregivingly Yours, Patrick Leer 
musings: patrick ponders 

Friday, July 16, 2010

an outing of fun and danger

Ever get nostalgic for a perfect milk shake?

Driving by we’ve noticed the 50’s Malt Shoppe in Carlisle and it looked fun. We also noticed there was no apparent accessible way in.

Like many establishments in historic and older towns the wheelchair entrance is in the rear. Being me, I visited before hand to walk the ground and measure door widths.
You could cop an attitude and stay away or you can look at this as a private entrance with a personal tour of the kitchen before dinning. It worked perfectly for us and staff could not have been more hospitable.

Atmosphere is well, 50’s Malt Shoppe with a perpetual juke box of 50’s music.

Food was excellent! Price was affordable!

Patti has Multiple Sclerosis related difficulty in holding objects and food. Their old fashioned milk shake glasses and their cheeseburger sliders where absolutely perfectly sized. Patti ate and drank effortlessly!

Applause! Applause!

Then … two miles away sitting at a traffic light - WHAM!!!

Patti said it best, “What the hell was that?”

Gratefully determining that Patti and I were neither bleeding nor broken, I was impressed to see that all our wheelchair tie down latches and seat belt had worked perfectly. Patti’s wheelchair and Patti had not moved an inch while plastic dashboard Jesus had flown off his velcro mount and odds and ends were all over the place.

Thankfully also the driver who rammed us was neither bleeding nor broken. Soon we were joined by Police, EMS, and Fire Department. The ‘lady in the wheelchair’ was enjoying getting more than her fair share of attention. She was a particular hit with EMS with her ‘colorful’ answers to neurological Q & A.

While we waited for accident investigation it was a blessing our van was operable and air conditioning could keep running for Patti.
Our van survived drivable and wheelchair modifications seem unaffected. Our side mounted ramp deployed and retracted without a problem.

Hopefully insurance and repairs move along rapidly. Mostly, I am grateful there was a today, and IS a tonight. In the blink of an eye …  

Caregivingly Yours, Patrick Leer 
musings: patrick ponders 

Wednesday, July 14, 2010

help needed: dragon slayers

Where have you gone, Dr. Jonas Salk
A nation turns its lonely eyes to you 
(Woo, woo, woo)

Some may remember, most cannot even imagine April 12, 1955

“Americans turned on their radios to hear the details (polio vaccine field trials), department stores set up loudspeakers, and judges suspended trials so that everyone in the courtroom could hear. Europeans listened on the Voice of America.”  

The vaccine is "safe, effective and potent."

“ … church bells were ringing across the country, …  parents and teachers were weeping“ "people honked horns, blew factory whistles, fired salutes, … took the rest of the day off, closed their schools or convoked fervid assemblies therein, drank toasts, hugged children, attended church, smiled at strangers, and forgave enemies."

The dragon named polio was slayed. The dragon slayer’s name was Jonas Salk (1914 – 1995).

Why has over half a century of medical science come and gone without another dragon slayer?

Maybe it has more to do with heart than science?

Heart is persevering …
   In those days discrimination from Jewish quotas restricted Salk’s education and employment opportunities.

Heart is courageous …
   When confronted with who would take the risk of human testing after his successful tests on laboratory animals, Salk his wife and children allowed themselves to be human guinea pigs. “I will be personally responsible for the vaccine."

Heart is altruistic …
  Edward Murrow: “Who owns this patent?”
  Jonas Salk: "No one. Could you patent the sun?”

Half a century later man has walked on the Moon, machines have rolled around Mars, yet why have we not cheered the defeat of another disease? Are Prozac and Viagra to be legacies of our times? ... We need less focus on patents and more heart and passion in medical science. We need dragon slayers.

Caregivingly Yours, Patrick Leer 
web site: 
musings: patrick ponders 

Sunday, July 11, 2010

World Cup, Wheelchair Seating, Esclerosis Múltiple, Multiple Sclerose

Reading a news story that today’s World Cup 2010 Final may be the most watched event in world history inspired a reflection or two over morning coffee.

Obviously all eyes will be on the field. Yet I hope somewhere somehow the absence of disabled fans is noticed. Why is accessible seating always expendable? Of the 87,000 seats at Soccer City Stadium there were only 118

“FIFA … guideline was that between 1 and 0.5% of the stadium's seating capacity had to be reserved for wheelchair-bound spectators. An equal number of seats had to be provided for their assistants….

The South African Disabled Alliance was briefed in May that “this had not been done … Inspection of the stadiums had revealed deficiencies in the location of disabled seating … and dangerous conditions”. 

I’ll do the math for you. Soccer City Stadium should have between 870 and 435 spaces for wheelchairs and an equal number of companion seats. 118 is disgraceful.

Politicians, celebrities and performers love to bring attention to wrongs when running for office, when they have to something to sell, or when ‘talking’ about some cause. Yet their faces smile back through countless photos from World Cup games. Remember that smiling collusion when it comes to believing their support of people with disabilities.   

Hey World! Fans roll as well as walk!

Those living with Esclerosis Múltiple in Spain or Multiple Sclerose in Netherlands struggle every day as heroically if not more than healthy athletes during a game. Imagine no time limits on duration.

Refelctions aside, grab a vuvuzela, make a lot of noise and escape into the beautiful game!

The potentially most viewed event in history is totally accessible on television. Ole ole ole ole!

Caregivingly Yours, Patrick Leer 

Saturday, July 10, 2010

hope, liberation, and CCSVI

After four score and more years of caregiving and living with Multiple Sclerosis it no longer surprises me when people approach us either as living encyclopedias of MS or to share MS news. 
Currently it is all about Chronic Cerebrospinal Venous Insufficiency (CCSVI) and/or Liberation Treatment.  

Yes hope of a new hypothesis on MS and treatment options has been loud.

Oversimplified CCSVI is about compromised blood flow in the veins draining the central nervous system. Liberation Treatment is about endovascular surgery to improve blood flow.

Paolo Zamboni, MD, Professor of Surgery, University of Ferrara, Italy looked beyond neurology for answers when his wife was diagnosed with MS. Improving blood flow reduced MS symptoms. Simply as a caregiver Paola earns a point from me.

Canadian TV heralded “The Liberation Treatment: A whole new approach to MS” in Fall 2009, click to watch on line. 

As for us …

“Zamboni emphasizes that the Liberation Treatment does not make people in wheelchairs walk again.”

Talk about a deal breaker!

Plus my Mother, decades ago, chose to have carotid artery surgery to restore proper blood flow. Though risk was “rare”, she suffered a massive stroke in post op. “CCSVI is an invasive procedure … risk for significant complication”.

You are your experiences.

When a wheelchair first became part of living with MS, Patti accompanied by her parents traveled to Germany for treatment. Hans Nieper, MD (1928-1998) offered an orthomolecular treatment for MS. She left the US in a wheelchair and surprised both Megan and me at the airport when she returned walking. … After spectacular early results, unfortunately in 2 years MS was again winning.

I wish for all those trying Liberation Treatment that it works.

In spite of the attention I was surprised one has to turn to medical tourism, but there it was, “CCSVI, Liberation Package … No Wait, All-Inclusive Fees in India … from anywhere upwards of $6,000 … (additional costs) airfare and post-treatment 3 day hotel stay”. You can almost imagine a voice over by the late Billy Mays.

Hurdles belong on a track not in the way of hope.

Caregivingly Yours, Patrick Leer 

Monday, July 05, 2010

a 4th of July adventure

July 4th was spent in a caregiving state of mind. Independence? Dependence? Why do they seem to mean different things whether you are pontificating or lifting?

This little guy seems a bit concerned while holding a hot dog in a park while his Dad holds his pinwheel and his Mom laughs. Taken in the 1920’s, I wonder what was on the boy’s mind who would become my father.

Old photo project and morning coffee aside, it was time to help get J & T on the road; teen autism can get over-focused on schedules and travel but rarely of a helping hand nature. Of course, that can be ‘teen’ as much as autism.

Then on to Multiple Sclerosis caregiving.  Patti’s folks host a traditional family style picnic and backyard fireworks with so many relatives that Patti forgets faster than she recognizes. MS cognitive, memory loss, and visual impairment symptoms are somewhat like attending without your 3D glasses. 

We experimented with a later arrival hoping Patti could make it past dark considering MS fatigue, July heat and Uhthoff's phenomenon. Later was actually a blessing for MS related dysphagia with less guests equaling less distractions and less well-intended people getting/giving her food, many that may be unaware of her eating, swallowing, and choking challenges.

Backyard fireworks were both fun and everything you are warned about. Unexpectedly a 10 shot aerial repeater intended to propel multiple, repetitive pyrotechnic charges hundreds of feet into the air tipped over after 3 launches. Instead of skyward,  shells whizzed by and around ricocheting off whatever and surrounding us in exploding colors, noises, effects, and smoke.

Surreally swinging a board through colored smoke at anything that flew toward Patti, I saw no one except myself and the two wheelchair occupants. You just cannot trust the two legged. The able bodied had run for cover!

It is not exactly Star Spangled Banner material but batting at rockets, I yelled to Patti. “Are you OK?” Through the exploding colors and smoke she calmly responds, “Yeah! … Can’t I just get a cigarette?” 

God bless America!

Caregivingly Yours, Patrick Leer 

Thursday, July 01, 2010

wheelchair accessible trails Kings Gap

It was one of those zip-a-dee-doo-dah kind of days. Any June day of 78°F (25°C) has Multiple Sclerosis friendly stamped all over it.

Wheelchair accessible hiking trails at Kings Gap State Park on South Mountain were our outing quest du jour.  

Stopping for gas I notice BP station logos, signs and materials removed, stacked up and a hand printed sign in the window “changing to Gulf”.  Impossible to not reflect on the contradiction as I feed the bigger problem to get to, as of now, an environmental sanctuary?

Arriving at Kings Gap, sometimes you just have to stop and applaud a blend of functionality, accessibility and creativity such as accessible bathrooms with commodes decorated like tree trunks.

White Oaks Trail: Paved 3/10 mile loop trail through a white oak forest. Rolling through the deciduous forest Patti and I both commented on the absolute quiet of no ambient noise such as traffic, air conditioners, etc. Narrow trail with lush trail side ferns and even moss on the trail at points give it the feel of a ‘walking path’ through the deep woods.  Accessible van parking directly at the trail head! EASY and ENJOYABLE.

Up at the top sits the Kings Gap Mansion (Cameron Masland Mansion) built a little over 100 years ago when people with too much money actually built 32 room stone mansions for summer homes. Whoever, whatever, the view is awesome. Adjacent accessible van parking.

Whispering Pines Trail: Paved 3/10 mile loop trail winding through a pine plantation of white pine, Douglas fir and larch planted as an experimental tree farm in the 1950s. Captivating trail with soaring trees, a reconstructed log farm house from 1850, and an absolute treat to the nose with all the pines … ‘BEST smelling trail’ kudos!

Easy trail UNTIL … a fallen tree made it impassable unless you had a caregiver attendant muscle the wheelchair over.

What better way to end the day than laughing through a game of hide and seek.
It's the truth, it's actual
Ev'rything is satisfactual
Zip-a-dee-doo-dah, zip-a-dee-ay
Wonderful feeling, wonderful day, yes sir!

Caregivingly Yours, Patrick Leer

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