Tuesday, April 28, 2009

roaming the streets in a wheelchair / JUBILEE DAY

Baked by a couple 90°F+ (32.2 °C+) summer days in April, we found ourselves thinking ahead to Jubilee Day.

Unlike the “Roaring 20’s” of the Great Gatsby here in South Central Pennsylvania the Mechanicsburg Borough Council decided to create an affair held during the June lull in farmer’s work that local residents “would not forget.” Blocking off several blocks of Main Street for Merchants and Farmers Day they let visitors “roam the streets”.

They stumbled onto one of the more wheelchair accessible events possible, pedestrian only streets.

Today known as “Jubilee Day”, that first ‘roaming of the streets’ has grown to 60,000 visitors and the largest one-day street fair in the Eastern United States.

For perspective keep in mind that Mechanicsburg has a population of less than 9,000.

Neither the armies of the Confederacy nor Hollywood have rivaled Jubilee Day crowds.

* During the US Civil War, Mechanicsburg was the northernmost town to be captured and occupied by the Confederate Army.
* If you watched the film, “Girl Interrupted” you have unbeknownst already visited Mechanicsburg. The ice cream parlor scene was filmed in
Eckels' Drug Store on Main Street.

Packed into the less than a mile of blocked streets, tens of thousands of people do not exactly ‘roam’. A wheelchair may as well be swallowed by a boa constrictor of human beings.

Obstacles tend to challenge us more than deter us and we soon discovered early morning of Jubilee Day. The hour before “official” starting time, summer temps are Multiple Sclerosis friendly, refreshingly cool and streets are less congested for wheelchair maneuvering. Most vendors are open and glad to give you their time.

One of the quirks of a street fair is that shopping is wheelchair accessible since it is set up on folding tables unlike a retail store where shopping is designed for standing people. Patti loves being able to actually see and touch items and chat in the give and take of street fair sales.

In its 81st year, Jubilee Day is on-line at Jubilee Day 2009, and can be ‘your friend’ on Facebook at Jubilee Day and Gotta Love Jubilee Day.

You can view OUR related videos at:
Jubilee Day 2007 (1 min)
Jubilee Day 2008 (wheelchair view) 3 min

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

Monday, April 27, 2009

caregiving: swine flu - when pigs fly

When it comes to all things swine perhaps the best advice is from one wise spider to one ‘terrific’ pig:

Charlotte: “Trust me, Wilbur. People are very gullible. They'll believe anything they see in print.”

U.S. Homeland Security issues a public health emergency order regarding swine flu outbreak.

Today the European Union is warning Europeans to avoid traveling to the United States or Mexico.

World stock markets are freaking out, even as investors are gobbling up shares of flu drug makers. “Follow the money!”

What is going on? … When did Homeland Security get into public health? Buy your duct tape now!

Anyone remember 1976, when the CDC called on President Ford and Congress to begin mass inoculations for swine flu?

Swine flu ‘panic’ has been more dangerous than swine flu in the United States.

40 million Americans received the swine flu vaccine before the program was halted after only 10 weeks. 25 people died after receiving the vaccine and more than 500 people developed Guillain-Barre syndrome.

Ultimately only 200 cases of swine flu were ever reported with one fatality in the US.

Today in this over communication age panic can get disturbing with self help guides for “Preparing for Pandemic Flu”, with such helpful hints as home safety kits including “deterrents (mace, pepper spray, etc.)”, and for your car - an air horn and a Taser.

Madness, absolute madness!

As a Multiple Sclerosis spouse caregiver I am in no way making light of any health risk, but there is an ocean of difference between vigilance and media frenzy. Dealing day in and day out with an out of whack immune system from MS, vigilance and common sense is ALWAYS required.

If you have symptoms of flu, talk to your health care provider right away. Swine flu can be treated with antiviral medications, but treatment must be started within the first 48 hours after symptoms appear.

Even better step up the common sense tips to stay healthy and avoid the rush to panic.

Caregivingly Yours, Patrick Leer

Friday, April 24, 2009

caregiving: stand by me

Caregiving is all about standing by another. Some days you just have to put all the trying to understand, trying to do it better, trying in general and just kick back for a couple minutes and enjoy a little toe tapping joyous music about standing by one another.

There are a zillion versions of “Stand By Me” but somehow the “heart” of this compilation version by street performers from around the world is heads above the rest.

Playing For Change: Song Around the World "Stand By Me"

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...

Monday, April 20, 2009

2009 MS Walk, Camp Hill, PA

Sunday morning people flock together for all kind of reasons from religion to sports to flea markets. It is always fun and inspiring to be part of a gathering of people, family, and friends brought together around living with Multiple Sclerosis.

Partly cloudy and 60°F (15.6 °C) the weather was a blessing for the 20th Anniversary of NMSS Central Pennsylvania Chapter’s MS Walk.

Interestingly, I observed more wheelchairs being pushed and electric mobility than ever before at the 2009 MS Walk at Camp Hill, PA.

“Patti’s Pride” team more than doubled its fundraising goal thanks to so many wonderful people. THANK YOU all!!

Take a minute and visit.


Fundraising is only part of what any MS Walk is about for those living with Multiple Sclerosis. For one Sunday morning a year, YOU and AWARENESS of MS are what people come together over. That sense of community even the briefest taste can be soooo refreshingly exhausting!

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

Saturday, April 18, 2009

a motley mosaic / Multiple Sclerosis vision

Part optic neuritis, part nystagmus, part MS demyelinated short-circuited communication between brain and eye, and part guesswork, … Patti basically ‘sees’ as if an image were a motley mosaic with some pieces missing and other pieces at varying depths, varying sharpness/blurriness, and varying intensity of color.

Or at least this is what I learned one fascinating visit with Patti to an ophthalmologist over a decade ago.

Rescheduling his other appointments and with Patti’s permission he invited several colleagues along with myself in to observe through his gadgets and machines what he called “MS Vision”!

Any artist representation is only as good as the artist, and yes, you Patrick are NO artist. At best it is an attempt to capture the motley mosaic of Multiple Sclerosis vision. (Click picture to enlarge)

He also had a ‘theory’ he shared that day that clues manifest years earlier and could be ‘seen’ in family photos with a progressing history of one eye closed. He bemoaned that such photos are usually thrown away as they are of course not flattering and therefore any such pattern would not be noticed.

Back in the pre-digital age you often got 2 sets for 1 when developed. For who knows why we had a tub of those old second sets, and sure enough there they were … candid pics of Patti from “pre-MS’ increasingly with one eye closed. Eerie!

Caregivingly Yours, Patrick Leer

Sunday, April 12, 2009

a caregiving Easter

Easter Sunday at a care facility is an anomaly. Parking lot full, sounds of children playing, families together. Wouldn’t it be nice if every Sunday was like this?

With progression of Patti’s Multiple Sclerosis related optic neuritis and visual impairment (legally blind) shopping for gifts has evolved from challenging to strangely fun. I push her around a store until two requirements are met. First, she can actually “see” it; second, it fits on her lap.

No Easter baskets, flowers, frankincense, or myrr from us!

After an Easter Sunday feast with Patti’s family, it was off to City Island to get in a couple miles of practice laps for the MS Walk next Sunday.

Pushing a wheelchair or better yet 160 lbs (145 Patti +15 chair) over 3-4 miles of neighborhood sidewalks and streets is not exactly something I pull out of the hat once each year. We TRAIN!!

Unless you have actually spent time in a wheelchair you may be surprised that even being pushed over that distance up and down curb cuts and bumping over uneven sidewalks takes training.

By 4:30 in the afternoon Patti wanted nothing more in the world than to “go to bed”.

Pennsylvania, Camp Hill - walk MS: Central PA 2009

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

Saturday, April 11, 2009

the carousel

As I am only a story teller, I thought I would drag some poets in to help with this entry.
Previously in, “Caregiving on the Conodoguinet” an outing stumbled into both 'the now' and a part of Patti's 'long ago then'. There was something about a thread of synchronicity I could not get out of my head.

“Pondering horses on circular courses
A purpose with nowhere to go”
Carousel (Revised) by Pablo Cruise

Generations including Patti’s parents and later their family were part of the history of this hand carved Carousel from Willow Mill Amusement Park, pictured above.

“I sat upon a painted horse,
And I went round and round
And up and down, and up and down,
To the hurdy-gurdy sound.”
On The Carousel by Ilo Orleans

Idyllic times yield to forces of nature, such as hurricanes and MS exacerbations.

Hurricane Agnes in 1972 would flood the meandering Conodoguinet Creek to 17 ft, drowning the carousel along with the amusement park.

Never fully recovering Willow Mill Amusement Park closed in 1989 after 60 years. The carousel was sold to Bushkill Park in Easton, PA.

That SAME year Patti was hospitalized with her first MS exacerbation … 'never fully recovering'.

“You hope this ride will last forever, you know it never will. … In life just like the carousel..... there's not another ride … never is in black and white, real life and dreams collide.” Carousel by Urban Legend
15 years later our daughter and myself driving through the flood damage from Hurricane Ivan crossed the Delaware River at Easton, PA.

Little did we know that drowned below the pictured flood water was the exact SAME carousel intertwining lives.

Squeals of laughter now only ride on the zephyr of memory.

Yet the 'place' where it began, Willow Mill Park, lives on as an “accessible” municipal park still serving kids and families ... and yes, Patti still "rolls" on though now teamed with a spouse caregiver pushing here and there.

'Forces of nature' do reshape the land and even people but not the hearts of kids who are too old to be kids at all.

“Tilt your head let the breeze kiss your face, always remember this wonderful place.” Carousel by Karen Palumbo

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

Monday, April 06, 2009

accessibility / bullying and bullsh#t

Les Expéndables (Prologue 2009, vallée de cumberland) Patti, Patrick, and Megan arrive to attend "Les Misérables".

Mme. Bull Merdler: “Do you know what seats you have”

Patrick: (Thinking this an odd question since holding printed tickets.) “Yes, wheelchair seats 1, 2, and 3”

Mme. Bully-ardo: “See, THIS is the problem! There should only be only TWO tickets!!! ONE wheelchair and ONE companion seat!”

Patrick: “Since when does a person in a wheelchair have ONLY one friend or one family member? The box office sold us three tickets in the wheelchair seating section.”

Mme. Bull Merdler: “Your third ticket can sit back here in the aisle and you two can switch at intermission.”

Seeing that Patti's MS related mental confusion was overwhelmed and our daughter (the third ticket) was giving me the glare of 'do not go ballistic on them with me standing next to you', I let it all settle for a moment.

Sitting next to me and occupying all the rest of the wheelchair section were several sheepish looking grand dames (none in a wheelchair nor visibly disabled). The woman adjacent to me leans over and apologizes explaining that where they are sitting are not their seats but Mme. Bully-ardo told them to sit there, “it was OK”.

Noticing Mmes. Bully-ardo and Bull Merdler huddling nearby I stood up and ‘engaged’ them. Surrounding us displaced in the aisle were a young man in a wheelchair with what I guessed was CP and companion, a woman who could not carry her portable oxygen up to her seat, a woman trying to maintain the security of the proximity of her high tech walker and too many more real life “les miserables?”.

With 35 years experience in the entertainment business, 20 years experience in caregiving, and having attended yearly performances at this theatre since it was built I was the wrong person to tag team with bull sh#t, and bullying.

I suggested that perhaps this unacceptable situation may not have occurred had the additional wheelchair seating in the orchestra seats NOT been sold to able bodied people.

Mme. Bully-ardo: “There is NO wheelchair seating closer to the stage.

Patrick: (gesturing toward aisle seats nearer the stage with white wheelchairs painted on them) “Since the theatre was built, those seats were designed and sold for wheelchair patrons.

Mme. Bully-ardo: “Well, we CANNOT” remove a seat just for a wheelchair.”

Patrick: “You do not have to. The armrests lift to accommodate transfer.”

Mme. Bull Merdler: “I am the theatre manager. YOU are not aware of the fire laws.”

Mme. Bully-ardo: “That’s right!

Patrick: “This theatre was built both fire law and ADA compliant.”

Mme. Bully-ardo: “A ‘wheelchair person' would trap everyone else in the aisle”!

Patrick: “Those seats were specifically built on the inside aisle seat. People exit OUT to fire exits not to the center of a theatre in case of fire.”

Mme. Bull Merdler: “Uh, they are NEW fire laws!”

Mme. Bully-ardo: “That’s right!”

One thing and only one thing changed, this dynamic duo either for their own gain or incompetence sold designated accessible seating to general sale.

Obviously nothing could be corrected at a sold out performance. Yet some times you just have to jawbone and even kick a little proverbial dirt on authority’s shoes to get in their thick self-centered heads.

Bullying and bull sh#t are too often the dual faces of theatre confronting disability attendance.

Disabled, elderly, or infirmed patrons are not “les expendables”!

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

Thursday, April 02, 2009

to walk or not to walk

Fundraising has become as much a part of Spring as flowers and showers.

“showy fundraiser walks, … upbeat copy about how you’ll be ‘making a difference’ or ‘bringing hope’ or ‘changing lives’. It all sounds great, I know, but my advice is “don’t walk”.”
Duncan Cross “Don’t Walk”

"I, for one, used to donate to MS charities. … I like to support charities where I can actually see my support making a difference --- today! Because suffering - today -- is what needs assistance, in my opinion."
Disabled Not Dead “Numbers Game”

Excellent questions and concerns about organizational fundraising are raised in the above entries. In our story, we NEVER participated in a MS Walk for the first 20 years of Patti’s diagnosis. Why? In the beginning, NMSS was simply NOT friendly to those with progressive MS.

Surprisingly and suddenly 4 years ago Patti remarked that she wanted to attend a MS Walk and we have been participating since (I push, she rolls).

By participating we discovered that NMSS had become friendlier to ‘living with MS’ not just ‘a race for the cure’. Today a NMSS assistance grant helps us to afford our wheelchair accessible van which in turn dramatically impacts the freedom of Patti’s daily life.

Progressive MS does get the short end of the stick, I suspect, because it is not ‘seen’.

It is a challenge to get Patti out and about. So when a grocery chain raises money for MS by asking at checkout if you would like to donate a dollar to MS, it can get interesting asking Patti and I that question depending on who answers first. (If I were to quote Patti's answers this would have to be an 'adult only' entry.) Clerks always LEARN more than a dollar’s worth about MS.

Fundraising walks and awareness rallies also create a brief sense of community. Let’s face it, any chronic illness or disease is isolating. While not everyone will agree with the course of any organization, for a couple hours it is refreshing to be around others ‘like’ yourself. Certainly not identical, maybe not even similar, but there are enough shared experiences, fears, hopes, and laughs to go around.

Patti's Pride: Central PA 2009 Walk MS Camp Hill, PA - April 19

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

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