mining for home medical equipment

Food, water, clothing, shelter, and home medical equipment are the necessities of life for caregiving.

Recovery, progression, and death endlessly flood the market with previously owned durable medical equipment.

Sellers are motivated more to get rid of something than profit from it. Downsides could include absence of warranties and such, and medical insurance, if applicable, may not cover equipment from ‘non-authorized’ vendors.

Yet, there ARE deals available. I myself witnessed at a local auction an Invacare 9000 folding wheelchair in mint condition (guestimate value $750+) go for a high bid of $50.

Good shopping skills are required (especially on the Internet) as things may not always be what they seem, for example:

Admiring a Hoyer Power Lift with Power Base (cost $4,600) in use at Patti’s care facility, I remarked how different my life would be IF I had one of these at home. An aide pointed out that she had seen one on craigslist for only a couple hundred bucs.

Checking out craigslist I found “Hoyer electric patient lift. Model HPL402. 3 1/2 years old. Good condition and everything works as it should. These list new at $2500, this is for sale for $600.”

With a few clicks more of Internet searching I found a couple NEW Hoyer model HPL402 listing for $1,600.

Shifting to eBay a search of “Hoyer lifts” revealed a NEW model for only $1,295. However, reading the fine print it was actually an Invacare Reliant Plus Lift, similar concept but different brand.

NEITHER was the exact same model as used at Patti’s care facility. Then again for homecare one-person use you may not need the same high end features.

Both Disabled Dealer Magazine and usedHME.com have searchable nationwide classifieds by item and area.

While the Internet offers caregiver convenient shopping DO NOT ignore local classifieds and auctions.

There’s gold in them thar previously owned durable/home medical equipment hills. Just remember where there is gold there is also fools gold, shop wisely.

Pragmatically mining the recycled market is not prospecting.


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

caregiving: making an entrance

Challenge? Or obstacle? The answer is not exactly in the proverbial eye of the beholder, but often in the resources, ingenuity and strength of the caregiver.

For reasons that never quite make sense, live music in intimate settings seems to bring the best out in Patti. I stare in amazement as she handles food and beverages with better dexterity than normal. Last night it was 9 PM before she asked about going to bed, almost 90 minutes later than her norm.

Yes, some outings are harder on a caregiver. Yet, when the pluses outweigh the challenges you go for it!

Before visiting historic Eckels’ Ice Cream Parlor our first time, I did my caregiver walk-through in advance. Oh yeah! This would be a challenge and a half. Three short wide front steps to a double door should have been relatively easy except unfortunately for us they are divided by a center hand rail creating two sets of steps too narrow for a wheel chair. Alternative side door has a single step but with a peak height over 24” due to slope of adjacent alley.

Positioning Patti’s rear wheels against the step and reclining her back to almost prone position I could use the shifting of her weight to facilitate pulling her chair up and over the step.

As Patti laughingly remarked, we do know how to make an entrance. Banging and bumping her chair around though furniture in the quaintly decorated interior we eventually got her all set up at a table to enjoy our friends “The Buc Hill Aces” perform.

http://www.youtube.com/watch?v=eCKm3_hb3Mc

As you might guess from the video, Eckels' is MORE than just another ice cream parlor.

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

MS: Is a bird in memory worth two on the head?

Picking Patti up for an outing from her care facility:

Patrick: “So Patti did you do anything interesting today?”

Patti: “I don’t think so. My memory sucks.”

Patrick: “Maybe a bird sat on your head?”

Patti: (laughing) “I am pretty sure that no f…king bird sat on my head!”

Memory loss symptoms of Multiple Sclerosis can be bizarre and challenging to work with.

Best solution is to be more than a part of someone’s memory, be a part of their NOW.

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer

musings: Patrick Ponders ...

MS, ALS, Lupus

Misdiagnosis is too abstract of a word for the human shock and range of emotions that impact people and families hearing MS (multiple sclerosis), ALS (amyotrophic lateral sclerosis), or Lupus and then that they may actually have one not the other.

Explaining that symptoms ‘mimic’ other illnesses seems more like the bed side manners of a carnival barker.

Does our health care system push billing codes ahead of science? Or is it more about wanting and wanting to give quick answers to the unknown.

Whatever the reason people and families must live with symptoms. Diagnosis is the elephant in the room that some can choose not to see, but one person must always see.

Not only does neurological science need to do a better job but family and friends need to bring meaning to life regardless of the label of a loved one’s “bad break”.

During July 4th celebrations this year, take a moment to reflect on the 70th anniversary of this most powerful and poignant moment:

"For the past two weeks you have been reading about a bad break I got. Yet today I consider myself the luckiest man on the face of the earth. ...

... I might have been given a bad break, but I've got an awful lot to live for. Thank you."

-- Lou Gehrig, July 4, 1939

Major League Baseball has teamed with four major non-profit organizations. "4♦ALS Awareness," will culminate with Gehrig's words being read at all Major League ballparks this coming July 4, during the seventh-inning stretch.

Lou Gehrig's speech
http://www.youtube.com/watch?v=a4msaZTJrTA

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

Jubilee Day 2009 / Multiple Sclerosis

After 60+ nights of cluster headaches I personally felt more like a mole in a whack a mole game, but Thursday was Jubilee Day, the largest one-day street fair in the eastern United States.

Living with MS and pushing a wheelchair through this human slalom in summer sun, heat, and humidity must by default be some kind of greatest one day MS challenge in the eastern United States, or something like that. Whatever … Patti looks forward to it and come hell or high water we go for it.

Sometimes a story is best told through the random strangers you not only encounter but who care.

While helping Patti with her lunch and related MS symptoms of dsyphagia, a security guard wandered over and asked if he could join us. NO ONE ever anywhere asks to join us. Turns out he also helps to care for a man with Multiple Sclerosis.

Street fairs are not only optimum for the logistics of shopping from a wheel chair but for the human interaction with artists.

Following lunch we were enjoying harpist Shawn Ruby at the Community Stage on East Main. Bringing her harp down off the stage, she offered to let people try playing it. I rolled Patti up to take a whack at it. Shawn could not have been nicer working to position the harp for Patti’s wheelchair and ‘helping/joining’ Patti because of her MS visual and physical symptoms to strum away.

Patti’s new necklace was purchased from Harmony in Design. They create ‘born again’ art from antique silver forks and spoons. Meeting and visiting with Jim and Lisa Harmon was a treat. Not only did they give Patti respect and the additional time her MS symptoms require to try and ‘see’ and ‘choose’ jewelry, their Samoyed, “Glacier”, is ‘in training’ to be a service dog and became a fast buddy to Patti.

The picture of Patti was taken three hours into what should have been wilting conditions for MS. Her smile says it all. Caring people can often trump nature and make challenges worth trying.

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

cluster headache: brain writhing on a corkscrew

IT lurks in the peace of sleep. No, that is not quite right it IS sleep itself, intertwined and indistinguishable.
90 minutes after closing my eyes, it (a Cluster Headache) jabs that corkscrew from hell above my right eye and torturously twists it in and then out. Malevolently crafted, headaches can last from 15 minutes to 2 hours.
"To sleep, perchance to dream- ay, there's the rub."
I admit I fear and resist sleep even while sleep becomes more tempting with sleep deprivation.

My first episode coincided with my first year of juggling Multiple Sclerosis spouse caregiving and raising our daughter. Cause and effect? Coincidence?

Over the past two decades, Cluster Headache episodes occur on average about every 18 months and last from 8 – 12 weeks.

Sleep deprivation eventually dominates any episode. Piles of things around me tell the tale of lost focus. Caregiving is a juggling act, yet one by one the juggled balls fall. My head snaps at the sound of rumble strips as my tires drift across lanes scaring me into adrenalin fueled alertness.

Disabling? Yes, during an actual Cluster Headache. Inconsistent abilities try to move forward through the deepening mud in between. However it WILL end! Or at least, it always has.

Nothing ends without learning. Empathy for pain in others and a window to better understanding life altered by disabling symptoms are lessons learned from a brain writhing on a corkscrew.

Previous related entries:

cluster headaches aka 'suicide headaches'

by Patrick Leer

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

Will the REAL Multiple Sclerosis stand up

I find myself reading journals written by people with Multiple Sclerosis and I ask myself how can this be?

Patti’s MS symptoms of visual impairment and inability to control hands and fingers prevent her from using a keyboard or mouse.

Perhaps voice activated systems, I ask myself? NO, Patti’s MS vocal impairments including slurred speech and inability to modulate plus cognitive impairments have whacked out any and all voice systems we’ve tried.

How can this be?

“And you may ask yourself
How do I work this?
And you may ask yourself
Where is that large automobile?
And you may tell yourself
This is not my beautiful house!
And you may tell yourself
This is not my beautiful wife!”

I read in these blogs written by people with MS about vacations, travel, cruises. How can this be? This is not our MS story.

I ask myself where Patti’s MS non-ambulatory symptoms are. What about the logistics of wheelchair accessible vans meeting them at airports?

I ask myself where Patti’s MS symptoms of total incontinence of both bladder and bowels are which determine range and logistics of travel? Patti’s MS cognitive symptoms prevent use of catheters, Patti amazingly survived pulling out a Foley catheter without rupturing herself.

What are these author’s secrets to living with MS?

"And you may ask yourself
Where does that highway go?
And you may ask yourself
Am I right? ...am I wrong?
And you may tell yourself
My god!...what have I done?"

I read of people with MS and their work places. How can this be?

Patti’s MS symptoms at the time (slurred speech, numbness in fingers, cognitive and visual impairment) crashed and burned her prior career as a buyer for International Paper within a year of her first hospitalized exacerbation and prevented her from driving for everyone’s safety.

Are these authors driving with MS? How can this be?

Letting the days go by
Into the blue again/after the moneys gone
Once in a lifetime/water flowing underground.

Will the real Multiple Sclerosis stand up?

Same as it ever was...same as it ever
was...same as it ever was...

Then again maybe Kermit the Frog best asks the question how can this be?

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

Multiple Sclerosis & childhood alchemy

Different points of view tell the story of living with Multiple Sclerosis ‘as a family’.

MS and Mother’s Day for Patti’s Mom holds memories ranging from a toddler daughter taking her first steps to that of an adult daughter who can no longer walk; a mind numbing time line that only a Mother’s heart can know.

Patti celebrated only one able-bodied Mother’s Day before Multiple Sclerosis robbed her. The intensity of onset and progression has left her a spectator or absent for so many traditional ‘firsts’ as our daughter grew up.

Our daughter Megan was 18 months old when Multiple Sclerosis changed our lives. Progressing MS symptoms have highlighted yearly the difference in her mother daughter relationship from anyone she has ever known.

15 years ago, confronted with the task of making a home made Mother’s day card, our then 6 yr old daughter used her different point of view to hit one out of the park.

http://www.youtube.com/watch?v=L0sUNNhyH6o
While Patti and I always worried about the impact of MS on raising a child, here was Megan addressing both her Mom’s visual impairment through video which could be viewed on a larger TV screen and her Mom missing her (Patti was having a particularly bad spell and staying with her folks). Childhood alchemy changing anxiety into hope.

Never underestimate different points of view.

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

knee contractures Multiple Sclerosis

Knee contractures are more than a Multiple Sclerosis symptom; they affect Patti’s opportunity to participate in life.

In the wheelchair era of Multiple Sclerosis changes occur in the surrounding muscle, tendons and ligaments of the knees which make the legs stiffer to bend and straighten. Knee contractures impair transferring because legs essentially tuck up under a person rather than extending.

From a caregiver’s perspective the safer and easier transfer of Patti from her wheelchair to bed, scooter, non-accessible seating, or whatever by simply helping her to stand and pivot equals outings and involvement.

When dead lifting her is necessitated because of knee contractures not only are both of us are at risk but her world shrinks.

Patti can be a genuine b*tch (“and proud of it” in her own words) about physical therapy.

A saint of a new therapist persists with Patti and changed the modalities of therapy:

1. Ultrasound is used to deep heat muscles and tendons.
2. Legs are manually manipulated and stretched.
3. SoftPro Static Gel Knee Orthosis are applied and supported with an ottoman like cushion while Patti is still in her wheel chair.
4. A nap wearing the soft pro braces closes out the routine.

In my opinion the results have been phenomenal, seemingly setting the clock back several years when it comes to transferring.

While PT cannot last forever, the nap with ortho braces is to be written into the nursing plan. ANY nap that is written into a care plan is a plus with Multiple Sclerosis care.

Additionally occupational therapy will next evaluate Patti for modifications to her wheelchair and/or a new wheelchair to focus on improving leg extension and posture.

A plus to the care facility era is that medical care surrounds you from aides for attended activities of daily living to nursing staff to doctors visiting you to ‘down the hall’ therapy.

Please always remember that the pluses are in large part driven by YOU. You must insure that a specific Multiple Sclerosis oriented care plan is in effect. Most important of all YOU, FAMILY, AND FRIENDS must remain involved and supporting.

previous related entries:
10/21/08 Multiple Sclerosis knee contractures
08/12/08 memory loss and knee contracture


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

a Mother's Day reflection

While I do not remember the scalpel slicing through the womb and being dragged into the world that is where my Mother’s Day begins.

Just because I had the good manners to sit upright and face forward I had already been zapped a couple times with x-rays and labeled a complete breech.

My Mother was a daughter of old world immigrants, her Mom from Ireland, her Dad from Wales.

Traditional values seem confusing today. You became a quick learner in the right and wrong department after a couple whacks across your butt with a belt. You only whined “I’m bored” once, because you were handed a list of chores. Threats of being left with the “Pineys” and eaten by the “New Jersey Devil” instantly stopped backseat squabbles between my brother and me on long car rides.

While traditional my Mom also inspired independence. She worked nights to balance parenting and her career as a psychiatric nurse.

Her career blended interesting insights into parenting. My Mom observed one of my earliest experiments in shaving and remarked that only child molesting, psycho killers shave that way. I still smile most mornings when remembering.

“Don’t cry, crying only lets them know they got to you.” To this day, I am not exactly sure who them and they are or what this means but I have stuck with this maternal advice.

Faith and religion were not optional activities. Being Irish Catholic was as necessary as food, shelter, and sleep. I ate so many fish sticks on Fridays I am traumatized by tartar sauce.

Through it all, love was unequivocal. That is the single most important lesson from my Mom. Well, that and the lilt of Irish laughter.

My Mom struggled her final years following a massive stroke. One January afternoon in 1997 I visited with her while my Dad had a doctor’s appointment.

That afternoon was surreal. My Mom was more lucid than in a decade. She asked me to read some of her favorite Bible passages and we got to talking about everything and anything. Yapping away more like two old friends than mother and son.

I thank God for that last memory and time together, as I would never see nor talk with her again.

Years later, I found a book of poetry she had given me decades earlier for my 30th birthday (which I had never even opened). I failed miserably in the ‘don’t cry’ lesson as I opened the book and read in her handwriting:

“To Pat,
Walk easy on the Earth!!
Your Mother”

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer

musings: Patrick Ponders ...

cluster headaches aka suicide headaches

They’re baaack …

It has been a 22 month reprieve for me but as they have for 20 years an episode of Cluster Headaches again rules my daily life.

"Suicide headaches" was the earliest attempt to describe the severity of cluster headaches being able ‘to take normal men and force them to commit suicide’.

Women with cluster headaches describe the pain as worse than giving birth. Imagine giving birth above your eye without anesthetic 2 or 3 times a day, for eight weeks at a time.

Debilitating, disabling, and beyond any definition of pain they become your life for the duration of the episode.

Since my last episode I was surprised to discover the pioneering of videos related to Cluster Headaches on You Tube. This first video is a most creative attempt using the music video format to explain cluster headaches.

http://www.youtube.com/watch?v=dm1Xi1a39dk
This second is REALITY and takes guts to watch. It takes even more guts to leave a camera on and capture what happens as the hell from a cluster headache destroys you.

http://www.youtube.com/watch?v=LAf_QFmTPkw
I writhed as I watched knowing too many years of such attacks. To avoid waking anyone, I have learned to chew on towels and scream into pillows. IF God is in a merciful mood I black out at the peak of pain and awaken later on the floor. Sadly, rarely is God merciful.

Soon sleep deprivation is in a neck to neck race with pain. I live trying for brief cat naps.

Through two decades of episodes while spouse caregiving for Multiple Sclerosis and parenting a child through infant to adult, human empathy from others was inherent. Family sees pain and results in caring unspoken adjustments in their own needs and behaviors.

New to this episode is living with Autism in our home. From what I have observed of Autism there is no awareness of another, nor resulting empathy for anyone else.

The time ahead will certainly test Friedrich Nietzsche’s, “What does not destroy me, makes me stronger.”

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

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

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

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer

musings: Patrick Ponders ...

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 ...

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.


MS WALK 2009, CAMP HILL, PA

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

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

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer

musings: Patrick Ponders ...

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 ...

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 ...

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

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 ...