autumn equinox 5K push and roll

Autumn has always been greeted like an old friend in our story. Living with Multiple Sclerosis is challenging enough without nature rudely complicating each day with summer heat and humidity. Autumn has always meant the return to enjoying outdoors with MS friendly temperatures of Fall and Winter.

This year the Fall Equinox was somewhat special for me. I first learned of a “9 mm vague nodular density in left upper lobe” on the past Winter Equinox. It has been 9 months since my lung cancer timeline began.

Sooo we created our own 'autumn equinox 5K push and roll' to celebrate the first day of Fall. With MS perfect 72˚F (22˚C) temperatures and accompanied by breezes off the River, I pushed and Patti rolled around City Island, across the Susquehanna River, up and down River Front Park, and back across the river to our wheelchair accessible van on the Island.

Maybe it was the workout, maybe it was just the day … but we both agreed the fresh squeezed lemonade from a vendor on City Island was the best we ever had.

For what it’s worth this was the exact same route I walked for a Lung Cancer 5 K a month ago and it only took me 50% longer to complete pushing Patti.

“Autumn, the year's last, loveliest smile.”

William Cullen Bryant

by Patrick Leer

BLOGS:

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

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

multiple sclerosis caregiving care giving harrisburg

Dr. Troy Moritz, DO

To paraphrase the most interesting man in the world "I don't always have surgery, but when I do, I prefer Troy Moritz, DO. Stay healthy, my friends."

Previously in this journal I have written about my successful lung cancer surgery and recovery. Yet to call it mine is to leave out the major player in the story, the thoracic surgeon Troy A. Moritz, DO, PinnacleHealth Cardiovascular and Thoracic Surgery.

What impressed me the most about this man were his people skills. He took the time to know me before he cut which I believe better enabled me to return to who I was by using minimally invasive procedures.

Surgery is scary and maybe more so to those in the waiting room because the unknown is even scarier. Dr. Moritz made the time when I was unconsciously oblivious to keep our daughter more than informed almost feeling involved. While I remember nothing, she got to see pictures of his hand in my lung. J

Enough of me, how about I let you hear and see him speak for himself in his 2 minute You Tube video:

Patrick Leer

BLOGS:

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

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

island getaway

My eyes look the same, they just see differently.

“How long do I have to live?” to “How soon can I return to my normal daily life?” in less than four months has been an emotional and mental roller coaster ride that left the tracks long ago.

Back when I was first coping with ‘how long do I have to live?’ (but concealing lung cancer from everyone) I wrote an entry exercise, fitness, caregiving for Multiple Sclerosis in which I guestimated I had pushed Patti’s wheelchairs at least 5,000 miles (8,000 kilometers) over the decades.

So with my successful surgery and recovery in the past tense and one test push under the belt it was time to add some mileage.

Under 68˚F (20°C) sunny skies we looped City Island in the Susquehanna River on Sunday for a mile plus (1.6+ km) outing. Originally planning on just using the level paved walking/biking path I soon was all terrain from my personal favorite concrete beach through water golf, scenic overlooks, picnic pavilions and docks.

Can anyone really push themself until they have pushed another?

Patrick Leer

BLOGS:

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

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

wheelchair accessible van parking

Wheelchair accessible van parking usually is somewhere between what ‘should be’ and the reality of what is.

According to Americans with Disabilities Act (ADA) Handicap Accessible Parking Regulations:

Van Accessible Spaces must provide an access aisle that is at least 8 feet wide next to the van parking space to permit a person using a wheelchair or scooter to exit or enter a van with a side-mounted lift.

That access space is always clearly marked with boldly striped markings on the ground.

Yet too often we will find another vehicle with a disability parking plate or placard squeezed into that loading space.

While not a problem for us, as I can always climb in and maneuver the van to deploy the ramp - however a wheelchair user / driver is screwed having no choice but to wait for the other driver to return and move their vehicle.

So I must give a blogosphere shout out to Hollywood Casino at Penn National Race Course! I was stunned to see such a completely sensitive, low tech, ingenious and effective solution to the problem when we visited Friday evening.

By simply drilling a couple holes in concrete and adding a plastic pole with reflectors they have made that adjacent loading space impossible for cars to park in yet leaving it completely functional for deploying a ramp or a lift.

It may be worth a pilgrimage just to see what is possible when a facility actually ‘tries’ to be accessible rather than ‘complies’. The ingenuity and simplicity leaves me in awe. 

“don’t forget the cannoli!” …

     Fugetabout a MS unfriendly forecast of hot and humid with showers. Instead we spent about 3 hours in a fun air conditioned environment with the freedom to choose to smoke or not smoke. Appealing physical therapy for Patti alternating right and left arms pulling slot machine handles. Watched horses race in the mud and people whoop and holler playing dice. Enjoyed some cannoli and lost a total of $2.50 playing slots. – What’s not to like when you can spend an evening out for under $10 anywhere anyhow?

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer 

4th of July care-cation

In memory we windsurf before Multiple Sclerosis; now I netsurf accuweather, waiting for temperatures to drop to a more MS friendly range.

Non-ambulatory Patti is dependent on others for not only needs but sometimes ‘motivation’. Just getting out of bed to deal with MS symptoms is more of a challenge than any waves or wind of yore.

Saturday (July 2^nd) evening I picked Patti up from her care facility for an outing to City Island in the Susquehanna River.

With its abundant accessible parking and whether planning to enjoy the island itself or roll and/or walk across the pedestrian bridge to Harrisburg’s Riverfront Park, IMHO, it belongs in an accessible hall of fame.

The West side of the island felt probably 10 degrees cooler in its deep shade with a gentle breeze off the river – if Hollywood could make a summer evening moment for MS this was it.

Riding the City Island Railroad, listening to the sounds of oldies filling the air from the Metro Bank Ball Park sound system, just watching sunset in the sky and on the river enjoying a summer breeze - it was an evening in Accessabilityville.

Sunday (July 3^rd) while steamy was MS proof. A picnic at Patti’s parents’ home offered the best of both worlds - an outdoor cookout consumed indoors in air conditioning.  

Monday (July 4^th) we got an early morning jump on summer heat heading out early to “Anything Floats” in Boiling Springs. Expecting parking to be a challenge because it’s a small town I was stunned when the first officer we encountered got on his radio and talking to other officers found and directed us to a wheelchair van accessible parking place right next to the lake.

Arriving before the crowds the sidewalks and lakeside was easily accessible and the float crews were unbelievably welcoming and happy to move whatever needed to be moved or pulled closer so Patti could easily see all the wild and crazy floats.

It was beyond refreshing to enjoy a weekend in time where “… certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness …” applied to everyone regardless of ability.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

wheelchair accessible: Great PA FlavorFest

Free admission! Free parking! Free tasting! Free entertainment! Wheelchair accessible! What is not to like? … only that the Great Pennsylvania FlavorFest only happens ‘once a year’ over Memorial Day Weekend.

Multiple Sclerosis symptoms are unavoidable companions in any outing.  Non-ambulatory is the big dog impacting everything from dressing and the rest of the activities of daily living to transportation. While Memorial Day weekend may kick off the summer season for many, sharing the enthusiasm for the weather is lost with MS sensitivity to both heat and seasons.  

Care giving is about making the adaptations or leveling that field. Not unlike the Indianapolis 500 or Coca-Cola 600 that dominates Memorial weekend sports, care giving is about the team behind the person in the chair. From the staff at Patti’s care facility that got her up, dressed, and ready – myself transporting and pushing her around the 35 acres – FlavorFest staff, vendors, and giant frog who patiently and pleasantly enabled Patti’s participation - team Patti kept Patti in the race to taste.

Obviously favoring her sweet tooth, Patti tasted her way through Red Raspberry, Blueberry, and Sour Cherry wines from West Hanover Winery; Peach Mist from Winery at Wilcox; Mountain Blush, Tailgate Red, Mountain Mist, and Mountain Sunset wines from Mount Nittany Vineyard until hitting the jackpot with their Rock Hill Red wine slush!

Wine slush was sooo good we bought a bottle of Rock Hill Red to make their slushy recipe at home. Bedecked in Penn State attire, Mount Nittany Vineyard staff also held the insight straight for Patti, an alumni. J

I would advise anyone dealing with mobility challenges that they do not rent wheelchairs or scooters, when it come to mobility assistance – it’s BYO.

Depending on your mobility device some parts of the Pennsylvania Renaissance Faire ground may or may not be the easiest to navigate. Manually pushed, it is all ‘no problemo’ for Patti and good exercise for me. 

As the cooler summer morning temperature gave way to MS unfriendly 81°F (27.2°C) with high humidity, a happy Patti wanted nothing more than a long air conditioned afternoon nap. 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

was it a tornado?

“In Cumberland County, police scanner reports around 6:50 p.m. stated that a tornado touched down” Severe thunderstorm hits Cumberland County

Just about that time, I was pulling up under the porte cochere of Patti’s care facility as all hell broke loose. Wind and rain blew so hard horizontally that cover meant nothing. Hail began to pound the rear window so hard I fully expected it to burst especially as hail grew to the size of jawbreakers. One extraordinary burst of wind briefly lifted the rear of our van and we watched pieces of the porte cochere blow off and disappear into the maelstrom of rain, hail, and wind in front of us. Power inside the facility failed and soon weighted outdoor furniture and trash cans were blowing by. With a loud crack the facility sign joined the casualties.  

How nothing hit our wheelchair van is beyond me but I am grateful. When wind slowed enough to open my door without it being ripped off I pried open the once automatic doors of the facility to see what was happening inside.

Not only was power out but back up generator had blown. Staff was executing tornado emergency procedures and getting everyone into wheelchairs and into halls away from windows until tornado warning was lifted.

Determining that we had power at home, I slalomed home on roads littered with trees, tree branches, puddles more suitable for boating than driving, and void of operable traffic signals. Emergency vehicles screamed in all directions.  

Around 11 PM the care facility called to inform me the tornado watch was lifted, emergency generator was working and full power was expected by 1 AM.

No guarantee our home power would stay on with more thunderstorms forecasted overnight, so we slalomed back.

Was it a tornado? I don’t think so. We lived through an F3 tornado in College Park, MD in 2001 that killed 2, injured 50, and left a 17 mile path of destruction. I’ll never forget the sound of a tornado, like trains racing from all directions.

All safe – that’s the only thing that really matters.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

wheelchair friendly Open Stage of Harrisburg

While applause is traditionally reserved for performers, here I must applaud a theatre itself! Living with Multiple Sclerosis as a family will do that to you because accessibility is more than a concept.

The Angino Family Theatre / Open Stage of Harrisburg “had me at hello”, as a caregiver, when wheelchair seating easily displayed on their on-line ticketing screen. Upon arriving, when they removed the seat so Patti’s chair could just roll into the spot eliminating transfers they earned my highest label, “wheelchair welcoming”.

We chose to celebrate Mother’s Day by attending “August: Osage County”. What could be better than spending Mother’s Day with a “matriarch who careens back and forth between incoherency and sharp-tongued, foul-mouthed lucidity?” Theater review August Osage County

MS symptoms of dysarthia and Pseudobulbar affect which can cause Patti to abruptly and unintentionally interact with movie theatre dialogue had never been tested in live theatre. through MS 'symptom D' glasses

Plus Patti has evolved through MS changes into somewhat a practitioner of “foul mouthed lucidity” herself. cursing and swearing and Multiple Sclerosis, oh my!

Front row wheelchair seating was in such proximity visual impairment was erased, actors often performed within an arms reach, and referring to cigarettes as ‘ciggies’ (Patti’s favorite phrase) in the dialogue may as well have been an invitation.  

Shhhing Patti never works, best to just try and ‘reboot’ her with a touch redirecting her attention momentarily. I cannot even remember how many touch prompts it took to nip Patti’s inter-acting debut in the bud.

The play rocked, like riding a rollercoaster of dramatic and hilarious ups, downs, corkscrews, and loops. Minus the physical barriers it was all the more thrilling. Minus Patti’s cognitive barriers it was a whole new dimension. By the third act there I was with my hand poised above Patti’s arm and our daughter behind Patti with her hands poised above Patti’s shoulders, as if we were all reveling in the play while trying to keep her from periodically jumping into the play. J

No, it was not a Hallmark Mother’s Day moment, it was better.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

autism awareness: one story at a time

Autism awareness is probably best learned one story at a time.

I found myself reflecting on how living with autism intertwined with our story for 16 months. Smiling at the pictured autistic fashion statement of wearing a head band around one’s chin - it was a unique shared time.

teen autism: why care? a hitchhiker’s guide

teen autism: diagnosis, a hitchhiker's guide  

Reading a story yesterday on the top 10 best places to live for autism and bringing baseball into a metaphor, Jennifer and Tyler essentially went from Red Sox to Phillies back to Red Sox, all in all not to shabby.

Teen autism becomes adult autism just as quick as any teen becomes an adult. Location and immediate future of adult autism services and opportunities was the eventual trump card … soon it will be again

Autism awareness can be confusing. The diagnosis is expansive. People not living with autism may have to turn to their imagination to even begin to get it.

Imagine a child who was, is, and always will be a child –dependent on others. Imagine a world of sounds and noises but no communication. Imagine not a dream within a dream, but living in your world within the world.

Now try to imagine the unimaginable, the parents. In their parallel universe, when their kid hangs up a coat, looks someone in the eye, responds to their name, or earns their first $4 paycheck for half a day of stuffing envelopes the Rocky theme may play even louder as the soundtrack to their pride and joy at the accomplishments of their kid. Though living from diagnosis through 24/7 rest of your life caregiving, they are able to endlessly redefine love.

What can everyone do for Autism Awareness Month? Be aware – learn. If family or friends are living with autism then be proud of them – be damn proud.

Patrick Leer

Health Activist:

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

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

a weekend for dreams and worries

“Our lives begin to end the day we become silent about things that matter.” Martin Luther King Jr.

Pennsylvania state-subsidized adultBasic medical insurance runs out of money at the end of February. 42,000 insured and almost half a million on the waiting list awake daily heading for the largest one-day loss of health insurance in State history. Pennsylvania subsidized health insurance for low income people to end  

 “The good neighbor looks beyond the external accidents and discerns those inner qualities that make all men human and, therefore, brothers.” MLK

Smiles tell the story of the “Exceptional Rodeo” for people with disabilities far better than words. Clicking on the picture opens the picture gallery from First Frontier Prorodeo at the Pennsylvania Farm Show.

  “We are caught in an inescapable network of mutuality, tied in a single garment of destiny. Whatever affects one directly, affects all indirectly.” MLK

Just over 100,000 houses were taken over by banks in 2005, before the housing market bust. … 1.05 million homes were seized by banks last year. 1.2 million are estimated to be repossessed this year. 2010's record-breaking foreclosure crisis: By the numbers  

"Life's most persistent and urgent question is, 'What are you doing for others?'" MLK

Safe Harbour protects children and their families from the cold. ... this huge uptick in donations couldn't have come at a better time … the donations received will ensure that each of the children residing at Safe Harbour is taken care of for the remainder of the winter season. Safe Harbour exceeds fundraising goal  

“The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.” MLK

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com
videos: www.youtube.com/daddyleer 

baby, I’d walk through bull sh*t for you

Probably not the most romantic verse but ‘baby, I’d walk through bull sh*t for you’ is no expletive when pushing a wheelchair through the livestock pens of the 2011 Pennsylvania Farm Show.

Nor can I remember Patti ever laughing harder and longer than at my footwear misfortune. Alas, it’s all in a days work of a caregiver / carer.  

Who would have thought that Texas Longhorns roam Pennsylvania? Lower in fat, cholesterol and calories than most beef and able to thrive on marginal pastures apparently the old ways are becoming the new ways. … nor is a written sign necessary to warn you – do not pet the calf. J 

Eventually the Farm Show becomes about the Food Court and we found ourselves addicted to schroomies (button mushrooms stuffed with cheese and jalapeno) from the PA Mushroom Growers Cooperative, before sharing a grilled portabella sandwich. Leaving just enough room to share a bowl of lamb stew from PA Livestock Association and wash the whole meal down with chocolate milk shakes from PA Dairymen’s Association. ... Sharing food I’ve found is a sneaky way to assist Patti with eating in public. Looks more like “taste this” than feeding someone.

While the Farm Show Complex is wheelchair accessible attendance overwhelms resources. Elevators are simply not people movers and the sheer numbers of baby strollers, wagons, vendor carts, scooters, wheelchairs and companions make wait time too much a part of a visit.

For years now we just roll along our work-around, no wait, no crowds and then there is the ‘ciggie’ break bonus of using outside.

Maybe it was too many mushrooms but it sure looked like Patti was pulling an enchanted carriage …

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com
videos: www.youtube.com/daddyleer