Friday, September 28, 2012

push and roll plus time travel

Fall push and roll outings are both freedom for Patti after the hell’s kitchen of summer unfriendly Multiple Sclerosis temperatures and great caregiver exercise for me.

Certainly temperature and distance are always constants but when you can add time travel to the push and roll – well, it’s just a jump to the left and then a step to the right. Put your hands on your hips and … I’m digressing ... back to topic.

We pushed and rolled along the Army Heritage Trail back to the 1940’s and WWII at the U.S. Army Heritage and Education Center’s 2012 Fall WWII living history event Friday afternoon.

Their 1 mile trail is always interesting because of tanks, forts and such to see. It’s also our favorite place to train for the MS Walk, "Army Strong" signs everywhere and such. However when they add the reenactors for living history weekends - it’s the best! 

Hanging out with the Americans
Hanging out with the Americans we got to listen to “In the Mood” literally ‘cranking out’ on an old record player you had to crank up (note the handle) before putting on that Glen Miller 78 rpm record. Notice the Lucky Strike ‘red’ cigarettes on the cot. We learned that staging-area camps during WWII were named after various brands of American cigarettes, e.g. Camp Lucky Strike. All the hustle and bustle is a reenactment of induction & basic training camp.

German Afrika Korps
The German Afrika Korps tent was more about weapons and motors, including an awesome BMW motorcycle from North Africa campaign.  All the weapons you see in the picture fit into and on that motorcycle and side car gunner. The WWII Red Cross was represented by Deutsches Rotes Kreuz (German Red Cross). We also learned that unlike the Allies, the German Army allowed women in non-combat positions such as signal corps, transportation, etc.

Now the Russians … well Patti’s smile says it all. History is a party with the comrades in the Russian tent.  
History is a party with the comrades in the Russian tent.  
До свидания!   (dah svee-dah-nee-yah)  

by Patrick Leer

Caregivingly Yours, MS Caregiver @
My Lung Cancer Odyssey @     

Saturday, September 22, 2012

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
Caregivingly Yours, MS Caregiver @

Wednesday, September 19, 2012

caregiving is hazardous to your health

Recently I have watched the grieving for the death of another long term caregiver as told through posts and comments on the Well Spouse Association Facebook Page.
Well Spouse Association support for spousal caregivers
The pain, the worry, the frustration, the fear and the anger of fellow long term caregivers shout out of my PC screen. Disagreements over why? What’s right? What’s wrong? Yet in the end … all march forward.

For thousands of years, Ecclesiastes has reminded us there is a time for everything and this is a time to remember that 30% of caregivers die before those they are caring for. Some studies show deaths higher”. Yes, years and decades of intense stress diminishes the immune system and multiplies chances of chronic illness, for example my own recent diagnosis of lung cancer after 22 years of long term spousal caregiving.

Caregivers have to ignore their own health or put symptoms on hold to accommodate the person they care for. Often we simply have no time left for our own health needs after hours ‘on hold’ or spent in waiting rooms as a caregiver/advocate.

Depression is reportedly abundant. If someone cannot see or imagine positive outcomes or solutions well they are less apt to care about their personal well being.

Certainly I am preaching to the choir in this blog … improving our own health habits will not make us immortal or even invincible.

At best we can extend the battle into overtime, fighting a fight that cannot be won. The person we care for will not “get better soon” nor will they “die soon”, we care in the real world not the Hallmark version.

My Dad was my Mom’s long term caregiver for over a decade. When he found himself ‘dying soon’ of pancreatic cancer he confessed to me he prayed to God to take her before him so she would not be left unattended.  

... How did that work out? He lived 4 months longer than her.

Long term caregiving is not for everyone. It’s driven, measured and rewarded internally not externally. 

We are unique soooo ... “Hey, let's be careful out there!”

Patrick Leer
Caregivingly Yours, MS Caregiver @

Saturday, September 15, 2012

fading red capes

superman action figure
Dusting my dresser I lifted my ‘action figure’ and found myself reminiscing briefly over the past quarter century of Multiple Sclerosis spouse caregiving.  

Decades ago my co-workers gave me this action figure when I finally had to abandon juggling working full-time, spouse caregiving, and basically single parenting.

Multi-tasking before it was even an overused word meant leaving work early, racing home to pick up Patti from the bathroom floor, shower and dress her, clean up the smeared excrement and urine from the bathroom, spray the house, and open windows before the elementary school bus arrived with our daughter and her friends. … I had to simply ‘find a way’ to juggle all the lives I was responsible for  -- that’s what MS home caregiving was.

Later when the care facility era began I felt ‘defeated’ at first before finding renewal in the teamwork era. I committed myself to 3.5 outings per week on average, followed by preparing and transferring Patti from her wheelchair to bed by myself using the bear hug one person unassisted transfer. We never used a lift in homecare and in my mind remaining part of her bedtime routine half the nights of every week keeps the care facility an ‘era’ rather than an ‘end’.

Recently I guestimated I have pushed Patti’s wheelchair over 5,000 miles (8,000 kilometers) over the years. If I had to do the same with “lifting” I would guestimate a total of 25 tons (22,700 kg) of one person unassisted transfers over just one year in the care facility era. Each home care year was ‘exponentially’ more. When caring for a non-ambulatory person, caring is about lifting hundreds of tons over the decades. Whatever ... it's a lot more than a warranty on any commercial lift.

This year my lung cancer diagnosis and surgery has been my own personal kryptonite and it’s annoying me. My transferring Patti to bed myself has dropped 10% and I ‘feel’ those manual transfers in my muscles affected by lung cancer surgery …

Why can’t life be like a comic book where caregivers’ red capes never fade and instead it’s the disease that weakens?

Patrick Leer
Caregivingly Yours, MS Caregiver @

Tuesday, September 11, 2012

National TV Dinner Day

Who knew that September 10th was National TV Dinner Day? In our story it was purely coincidental that this homage to American family fine dining would collide with expanding my experiments with caring and the culinary arts.

Two months ago I began my experiments with finger food to hopefully prolong Patti’s ability to self-feed.

Two months ago I accompanied the earliest experiments in self feeding with verbal cueing … now here I was preparing to experiment with introducing TV to eating.  

Whatever … with nothing more than monitoring, Patti safely and enjoyably self-fed herself the evening’s finger food bowl of fresh fruit, boneless buffalo wings, and cheddar cheese … while watching the Simpsons followed by the evening news.

Again I attribute much success to cutting everything into varying shapes and sizes along with the differences in touch to the textures of fruit, poultry, and cheese. Let’s face it licking one’s fingers after buffalo wings is something that gets your attention.

Distractions while eating for Patti with her Multiple Sclerosis related dysphagia can be dangerous to fatal. However what I have always found is that it is the kind of distraction. Large gatherings involving meals are audio and cognitive over- stimulation. For people with cognitive or dysphagia symptoms frankly it is more about trying to survive than ever enjoying a noisy busy dinner.

I am not saying TV is a substitute for anything.  What I am saying is that I was able to introduce a variable, a single ‘distraction’, into my experiments with finger food for self-feeding without a problem for Patti. … In fact she surprised me when she discussed some news stories during commercials. Perhaps engaged might be a better word than distraction?

In the care facility era I look for symptoms I especially can have a unique ‘hands on’ impact with. I can no longer do it all but I can do some of it now even better.

by Patrick Leer
Caregivingly Yours, MS Caregiver @

Wednesday, September 05, 2012

accessible parking lot paralympics

Oh, the stuff you will learn!
Looking out the windows of a wheelchair van!

Normally we just arrive, lower the ramp, roll out Patti in her wheelchair and off we go. However Labor Day morning while waiting for showers to break we observed what I can only describe as the accessible parking lot paralympics.

Even Patti with her visual impairment noticed and would ask what was that? Or there goes another one?

Over about thirty minutes, a handful or so of cars pulled in and parked with accessible parking placards. Out of each car popped at least one person who sprinted through the rain directly past our van and into an unnamed minor league baseball stadium.

Hmmm …

Sprinters certainly were not blind, nor were they unable to walk 200 ft, nor did they display any portable oxygen, nor require the use of a wheelchair or assistive device … or the more visible reasons for a PennDot accessible parking placard.

Leaving one of two conclusions …

For the skeptics - able bodied people would misuse someone's accessible parking placard for a parking pass on a rainy day.

For the optimists - a minor league ball park employs many people wearing sprinting prosthetics to work under their clothing.

by Patrick Leer
Caregivingly Yours, MS Caregiver @

Tuesday, September 04, 2012

accessible rain

Weather can amplify dependency especially if someone is like Patti, non-ambulatory and not only wheelchair dependent but dependent on others to push her and get her in an out of foul weather.

Erroneous weather forecasts have a completely different impact on people like us ‘living accessibly’ than on our umbrella toting totally able bodied fellow citizens.

When the down pouring waters from the remnants of Hurricane Issac met the Festival of Sparklingly Waters (Kipona) on City Island in the Susquehanna River it was a good time for ducks not so great for people.

You may notice the teepee through the windshield of the photo, Patti already in her water proof wheelchair lap blanket, a reflection of me taking the picture in the rear view mirror and the sheer boredom captured on Patti’s face.
Arriving early Labor Day morning we sat through several down pours waiting for the weather to beak listening to an audio book (weather forecast remained “cloudy” in spite of downpours).

You may notice the teepee through the windshield of the photo, Patti already in her water proof wheelchair lap blanket, a reflection of me taking the picture in the rear view mirror and the sheer boredom captured on Patti’s face.

While I was more than up for some Gene Kelly style dancing in the rain, I let Patti make the call. While we have the clothing to get waterproof the bigger question is will the outing be fun for her.

She opted to head for a nice dry noon matinee of the stop-motion animated comedy horror “ParaNorman”.  Let’s face it, pilgrim zombies have mobility challenges and face stigmas that made our morning seem easy. IMHO freakishly fun even for big kids like us.

Yeah weather and all that can be a pain in the butt for anybody’s plans but when a woman with severe multiple sclerosis is being pushed around in her wheelchair by a lung cancer survivor let’s face it, if the outing ends with laughter – it’s a good outing.

by Patrick Leer
Caregivingly Yours, MS Caregiver @

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