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 

web site: http://caregivinglyyours.com/ 

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

musings: patrick ponders

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 

web site: http://caregivinglyyours.com/ 

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

musings: patrick ponders

a 4th of July adventure

July 4^th 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 

web site: http://caregivinglyyours.com/ 

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

musings: patrick ponders

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

web site: http://caregivinglyyours.com/ 

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

musings: patrick ponders

Accessible adaptive vehicles Pennsylvania

We struggled for longer than we should with Patti’s failing ability to transfer from wheelchair to our car. In part this was ignorance of options. Caregiving does not always leave a lot of time for searching especially when you are not exactly sure what you are searching for.

These days while out and about using our wheelchair accessible van we often attract inquiring minds and answer questions as best we can.

It occurred to me that since the journey from need to finding an adaptive vehicle is still pretty much a needle in a haystack compared to conventional auto shopping that I should compile a list of Pennsylvania adaptive vehicle facilities offering modifications and service. Most additionally sell wheelchair accessible vehicles both new and previously owned.

So, if you want to ask some questions AND kick some tires …

VCI Mobility

www.vcimobility.com

Norristown, PA

800-784-8267

Galbreath Mobility

www.galbreathmotorco.com

New Castle, PA

724-656-1075 / 724-656-0866

Haveco

Harrisburg, PA

717-558-4301 

Keystone Coach Works

www.keystonecoachworks.com

Bethel Park, PA

412-833-1900

MITS Corporation

www.mitscorp.com

Glen Rock, PA

800-243-6487

MobilityWorks

www.mobilityworks.com

Wall, PA

877-275-4907 / 412-824-8091

Ride-Away handicap equipment corp

www.ride-away.com

Norristown, PA

888-743-3292

Spliter, Inc

www.spitlerinc.com

Montoursville, PA

570-368-1771

Total Mobility Services

www.tmservices.com

Boswell, PA

814-629-9935

WEBB Medical Systems

www.webbmedicalsystems.com/adaptive-driving-systems.asp

Shillington, PA

800-266-6633

While more random, it is not impossible to find an adaptive vehicle on a local car lot, and you can find adaptive vehicles through classified advertising both local and interstate such as Disability Dealer Magazine.

Money is ALWAYS a factor and “The Pennsylvania Assistive Technology Foundation (PATF) is a non-profit organization that provides low-interest loans for people with disabilities so that they can buy the assistive technology devices and services they need”.

Pennsylvania Assistive Technology Foundation  www.patf.us/

King of Prussia, PA

888-744-1938

Realizing this blog is also read outside of Pennsylvania, click on Alternative Financing Technical Assistance Project for assistive technology loan programs in other states.

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 

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

musings: patrick ponders

storm caregiving

Severe thunderstorms swaggered through with 60 to 70 mph (97 to 113 kph) winds and the deluge of kong. While down came the heat and humidity so too did trees, branches, and power lines.

Physical and/or cognitive symptoms of any chronic illness or disability change any equation. Living with caregiving and Multiple Sclerosis for 20+ years severe weather is never quite just a news story.

                                                                 

Later picking up Patti for an outing she shares with me only that the storm was “very annoying and loud” as she finished her dinner sitting in front of her room air conditioner in a personal oasis.

Oh yes, though while lost in her memory, there was a power outage. Emergency lanterns were still visible though no longer in use. Portable fans were in abundance in halls and common areas to assist central air conditioning working overtime to recapture down time. Phone system was still not totally up and running. Cable TV was still out.

Neighboring buildings residential and commercial were still without power. Driving was interesting to say the least with many signal lights not working and downed tree branches rerouting traffic.

Facility emergency generators unquestionably help and power companies do somehow prioritize medical necessity.

Power outage began during a shift change so actually twice the staff was around to respond and assist residents. Some times you just get lucky.  

When nature decides to shock and awe, attended care is a godsend.

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 

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

musings: patrick ponders

caregiving as an existential quality

Emails from people I do not know is all part of blogging about caregiving. A recent email from Harvard Magazine caught my attention. Caregivingly Yours is honored to share their requested link to this month’s magazine.  After all there is NO admission criteria to caregiving.  

“... I am not a naive moralist. I’ve had far too much experience of the demands, tensions, and downright failures of caregiving to fall into sentimentality and utopianism. Caregiving is not easy. It consumes time, energy, and financial resources. It sucks out strength and determination. It turns simple ideas of efficacy and hope into big question marks…”

“On Caregiving” in current Harvard Magazine, opens a poignant and unique window shared through the eyes of Arthur Klienman, caregiver for his wife Joan and professor of medical anthropology and psychiatry at Harvard Medical School.

“… It can amplify anguish and desperation. It can divide the self. It can bring out family conflicts. It can separate those who care from those who can’t or won’t handle it. It is very difficult. It is also far more complex, uncertain, and unbounded than professional medical and nursing models suggest…”

“… economists configure caregiving as “burden.” Psychologists talk about “coping,” health-services researchers describe social resources and healthcare costs, and physicians conceive it as a clinical skill. Each of these perspectives represents part of the picture. For the medical humanities and interpretive social sciences, caregiving is a foundational component of moral experience…”

“… As a scholar, I engage with other medical humanists to understand the dimensions of this moral activity—how it is experienced and organized. In part, I hope it can be better taught…”

“… I learned to be a caregiver by doing it, because I had to do it; it was there to do. I think this is how most people learn to be caregivers, for people who are elderly, disabled, or chronically or terminally ill …”

“… out of the billions of ordinary acts of caregiving perhaps also comes much of that which, imperceptibly and relentlessly, sustains the world.…”

To read the full article click:

http://harvardmagazine.com/2010/07/on-caregiving

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 

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

musings: patrick ponders 

U.S. scores! ... dead last in healthcare

"... when a country fails to meet the needs of the most vulnerable, it also fails to meet the needs of the average citizen ..."


Mirror, Mirror on the Wall: How the Performance of the U.S. Health Care System Compares Internationally, 2010 Update


Overall rankings:

1. Netherlands
2. United Kingdom
3. Australia
4. Germany
5. New Zealand
6. Canada
7. United States

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 

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

musings: patrick ponders 

Father's Day: to memories and beyond

Ah yes, Father’s Day. Hard to forget Father’s Day weekend 13 years ago. Watching, holding, sharing my own father’s dying hours of pancreatic cancer through the longest night. The time of angels jumbled with a lifetime of memories.  

Multiple Sclerosis turned our family dynamics and roles topsy turvey. Never have found the proper father label. Caregiving and parenting had to coexist. Certainly won’t figure it out today.

An 11^th hour change in our daughter’s work schedule changes family plans. How many times has that happened in my own life? Odd to be the receiver instead of the changer.

Though dependent Patti is still a daughter and needs to share her own Dad’s Father’s Day celebration. Securing her into our wheelchair accessible van, she remarks “Why are the birds making so much f#cking noise?” Several MS symptoms involved here but I admit I enjoy a laugh at her perspective on the day.

By default we end up splitting the day between MS time and well family time as we have sooo many times before. Patti returns to a desired and deserved nap.

Later our daughter offers to take and treat me to Toy Story 3 since when she was a kid I took her to the first Toy Story.

Reminiscing, MS took Patti out of the physical side of parenting that was cruel. Yet the world I stepped into was beyond cool.

Learning to play with Barbies. Learning to ice skate in my 40’s to keep up with our daughter. Being the only Dad in ‘Mom and Me’ classes for gym, swimming, and dance. Playing board games like “Pretty Pretty Princess”. ‘N Sync, Spice Girls, Pokemon …

Then it is circle of life time. When I took Megan to see the original Toy Story I paid adult and she was a discounted child ticket. As our daughter pays for Toy Story 3 tickets she pays adult and I am the discounted senior citizen ticket. … I will NOT go quietly!

Challenging and barely defeating Megan in an air hockey game in the arcade I order a large Buzz Blast drink from the concession stand. To infinity, and beyond!

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 

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

musings: patrick ponders