week in the life of a wheelchair accessible van

Facing a week without our wheelchair accessible van cast a shadow on our August calendar.

Our van needed to spend a week at the vehicle spa getting rejuvenated after the collision. Costs of repairs and a rental vehicle - responsibility of USAA insurance, their client had rear-ended us.

                                            

Finding a ‘comparable’ rental vehicle was frankly more of a challenge than a point of contention. On site Enterprise Rent-a-Car office was worthless. Kudos to McCafferty's Collision Center! Their staff not only grasped living with wheelchair accessibility but found the needle in the haystack.

                                                        

Ta-da! Accesible Rental Vans of Owings Mill, MD to the rescue, with pickup and delivery service to Maryland, Washington DC, Virginia, Pennsylvania and Delaware.

Rendezvousing with me at the collision center, the rental Dodge Caravan/Braun Entervan was configured ideally for our needs, an able bodied driver and wheelchair passenger. … Well almost – later discovering the air conditioning did not function at the highest setting was a problem for living with Multiple Sclerosis heat sensitive symptoms especially in August.

One phone call, no hassles ARC met me the next morning with another van. Inventory and commitment to customer satisfaction was exemplary. Keep in mind their base of operations is 80 miles away.

Second Dodge Caravan/Braun Entervan’s air conditioning worked perfectly! Intriguing to me, it was equipped with both regular and hand controls. I have never had the opportunity to ever see much less use accessibility driving controls. It has been a new window onto assistive technology.

… and gave us a good midsummer’s laugh over imagining Patti behind the wheel. Run for your lives, legally blind driver locked and loaded!

The more severe the progression of Multiple Sclerosis the more isolating it can be. Wheelchair accessible vehicles are more than empowering they represent freedom.

Freedom of mobility is too often not treated like a necessary activity of daily living. We have been blessed this week to have encountered so many good people working in businesses who actually ‘get it’ and have gone the extra mile to make it work.

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

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

musings: patrick ponders 

knee contractures / newly diagnosed MS

We were out and about the other night enjoying a summer evening, due in large part to the ongoing success of Patti’s daily therapy for Multiple Sclerosis knee contractures. 

                          

Easier and safer one person transfers equal more outings plus prolonging my back is in both our best interests. When Patti can extend her legs during a transfer everything just comes together.

For whatever reason care facility staff and Patti have been into a groove about putting on the softpro static gel knee orthosis when Patti settles down for her afternoon nap. Sounds so simple yet like anything involving team work you can assemble a team but that does not mean they will accomplish anything.

Certified nursing assistants (CNA) assist Patti into bed. The licensed practical nurse (LPN) needs to put on the knee orthosis as it is ‘prescribed’ therapy.  And of course Patti who can have rather strong feelings about the knee orthosis as a royal pain in the ass. … for whatever reason they are clicking.

We encountered a young woman we knew, out with her two young children. Greetings and salutations froze on the summer breeze as she shared that she had just been diagnosed with Multiple Sclerosis.

Time just stopped.

“Couldn’t it be something else?” “Couldn’t they be wrong?”

We listened. We cared. We shared our time and ourselves.

Likely we were a better audience than most since we had no questions about ‘what is’ MS.

With Patti’s own MS diagnosis in long term memory, she participated in the conversation, even helping with the refreshing sound of laughter as they shared a laugh over “neurologists suck!” and the absence of social skills in rocking someone’s world with a diagnosis of MS then reminding them to make sure to stop at the receptionist to make your next appointment.  

As a MS caregiver for 20+ years my focus evolves with Patti’s MS progression. Yet for 200 people a week in the US the journey is just beginning.

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

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

musings: patrick ponders 

thunder gods

With NASCAR paused in the North between Pocono and Watkins Glen, three of its top drivers Tony Stewart, Kyle Busch, and Kasey Kahne took a break from the tracks of thunder to race sprint cars on a legendary local dirt track to raise money for a good cause.

"Any time Kasey has an event that we can make, we obviously want to make it," Stewart said. "When our schedule opened up, it was a no-brainer to come here."

The Kasey Kahne Foundation raises money to give back to chronically ill children and their families.  All of the proceeds from Thursday's “Battle at the Grove” went to the charity.

An outing to Williams Grove Speedway is something Patti has absolutely no interest in, especially since we can hear it on our patio 5 miles away. For whatever reasons as her visual impairment has worsened with Multiple Sclerosis her hearing has improved. A couple hours of trackside mega-decibels has absolutely no appeal.

Now I have attended a couple times and while loud is an understatement and the proximity to drivers, cars, track and racing is captivating it’s the dust that fascinates me. Walking through the parking lot after dirt track racing is like walking through a mutant winter wonderland. Car windshields need to be cleaned of dirt. Even your hair and clothing is coated with a layer of dirt.

Is noise and dirt an acquired taste or just clutching onto eternal childhood? After all wasn’t the dirtier you were an indication of how good a time you had.

Though if talking about feeling good … how great does Aaron Ott, who graduated high school only two months ago, feel after getting down in the dirt with three thunder gods and winning the “Battle of the Grove”?

Charitable fundraising not only demands creativity but becomes all the more important in rougher economic times. Kudos to NASCAR driver Kasey Kahne, Ollie's Bargain Outlet, and Williams Grove Speedway.

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

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

musings: patrick ponders 

cognition, memory, and sociopath clown? oh my!

Caregiver as interpreter becomes part of the duties as memory loss and cognitive impairment symptoms join daily life. While Multiple Sclerosis specific in our story such symptoms are not unique to MS caregiving.

Personally I find myself angsting more over this than all the physical aspects of caregiving.

When you start thinking for someone, it is too easy to slide into expediting, then manipulating, and soon you can easily be spiraling downward toward politician if you do not force yourself into a system of checks and balances. 

Am I guilty of assuming my perspective is right at the risk of becoming a caregiver version of ‘Captain’ from the movie Cool Hand Luke, “What we’ve got here is - failure to communicate”.

Or am I looking too far beyond what is immediately in front of me and too deeply into communication theory such as “One Cannot Not Communicate” (every behavior is a kind of communication).

What I do know is that simple becomes complicated and complicated becomes simple. Is bending everything else to accommodate what you think will work best really ethical much less viable? … Life is dynamic only change is constant.

When angsting even compliments can be unsettling. “You always get her to smile.” “She’s always laughing when she’s with you.” … Hey! If you want smiles any garden variety sociopath can teach that class. If you want laughs call in the clowns. … OMG! I am becoming a sociopath clown?

Fortunately there is always Patti the only check and balance that really matters. While trying to share some of my angst she remarks, “Can’t I just have a fu#@ing cigarette?”

Caring is immediate never abstract. The noise in my head can wait.

Turning to her with an exaggerated smile and a quip about me being diagnosed with diarrhea of the mouth I have to wait until Patti stops laughing before handing her a cigarette. - OMG!

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

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

musings: patrick ponders

teen autism: soon it will be again

Sharing a home with teen autism and repeatedly hearing phrases such as “soon it will be again” never ceased to intrigue me. Communication challenged or insight?

Early in July, J & T returned to Massachusetts after almost two years here in Pennsylvania. … Soon it will be again?

Immediate needs of individual caregiving swallowed the idealism of two long term caregivers as mainstays for each other.

Living with teen autism is above all about autism, 24 hours a day, 7 days a week.

States herald programs and services. Reality is a picture painted by funding or lack thereof. Services and programs are as necessary as air to breathing.

One summer in Pennsylvania rippled for months through both their lives. With only half a day, three days a week of summer school special education contrasted with full day, 5 days a week in Massachusetts routine cracked. For Tyler that meant anxiety surged. For Jennifer as a single parent school hours are the ‘the work day’; a loss of the majority of income for even a couple months impacts everything.

More significant is what may or may not be available when Tyler turns 21, only 3 years away.

Less now is not likely to become more later. As a parent you do whatever it takes for your child.

Back when Tyler was diagnosed with autism the prevalence was 1 per 384 children. NIH recently used the prevalence of one in every 91 children.

We are only seeing the tip of the iceberg of autism thrusting up into adult age and the quest for adult services.

As dependent adults what will they do, where will they go?  Can you even imagine how poignant those questions are for a parent?

These are extraordinary parents who have nurtured their younger child time after time beyond what they were told their child would never do.

Parenting a teen as most know it is about nurturing independence. 

Parenting teen autism is about preparing to grow old with autism.

“Soon it will be again.” 

Caregivingly Yours, Patrick Leer 

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

fall of the wall of exclusion

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

Monday, July 26^th will mark the 20^th 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 

web site: http://caregivinglyyours.com/ 

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

musings: patrick ponder

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 

web site: http://caregivinglyyours.com/ 

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

musings: patrick ponders 

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 

web site: http://caregivinglyyours.com/ 

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

musings: patrick ponders 

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 

web site: http://caregivinglyyours.com/ 

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

musings: patrick ponders 

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: http://caregivinglyyours.com/ 
videos: http://www.youtube.com/daddyleer 
musings: patrick ponders