28th Anniversary

Is a picture worth a thousand words?

--
Patrick Leer

Health Activist:

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

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

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

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

when tradition is not accessible

How we celebrate holidays are traditions. I mean there is no law about how one is to celebrate the 4^th of July for example. Yet unquestionably there are pressures.

Holidays like most things are biased toward able bodied able minded celebrations. When that is not your life we adapt.

First and foremost heat and humidity is synonymous with the 4^th of July and also public enemy #1 for Multiple Sclerosis, something has to give here. We adapt making the 4^th of July more MS friendly by turning it into a morning holiday.

Parked in the shade of a weeping willow tree Patti was close enough to see and interact with crafts and contestants in Anything Floats race in Boiling Springs, PA … while the temperature was still only 78˚F (25.5 ˚C). Later as the temp neared 100˚F (37.7˚C) Patti was already enjoying her air conditioned siesta!
Anything Floats July 4 Boiling Springs 38sec

In this care facility era we are blessed with teamwork getting ready. Having help with Patti who is not only non-ambulatory but unable to assist with any of her activities of daily living is a godsend. Arriving to find Patti up, changed, dressed, and transferred from her bed to her wheelchair is immeasurable in the effort and stress it saves me and empowers our outing.

Progression of MS symptoms has unquestionably affected outings over the years.

Duration for example is affected by bowel and bladder incontinence. With progression, it’s not about finding an accessible commode but about leaving to find a bed to transfer Patti to and change her Depends and clothing.

Even sitting upright in her wheelchair for long periods of time is ‘complicated’.

Dysphagia puts her at increased risk of choking. Holidays and the hospitality of food seem to go hand and hand. Large loud gatherings with food are not fun as my vigilance must be undivided.

Blend in heat and each and every symptom above only worsens.

Sooooo why even get out of bed? Simple to go where no one has gone before.  Some follow traditions, we create new ones.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

Memorial Day with a Civil War Veteran

For Memorial Day 2012 we decided to do something different - go quest for a veteran ancestor. Late last Fall I had played around with ancestry.com stalking dead ancestors with clicks of a computer mouse but now it was time to get real.

Patti’s paternal great-great grandfather, while unknown in her family oral history, still seemed from my research our most promising quest.

George R Decker (1833 – 1915) fought in the US Civil war with the 17th Pennsylvania Cavalry. A lifelong Pennsylvania farmer he fought through and survived three years of Calvary engagements in most of the battles of the Eastern campaign of the Civil War including Gettysburg.

I knew from his Civil War Veteran’s records that he was supposed to be buried in New Freedom Cemetery and after driving around the cemetery and then pushing and pulling Patti’s wheelchair through the tombstones and over many deceased, eureka! we found him .. and his wife, too.

We had brought along a picnic basket and bottles of ice water. ‘Real feel’ temps of 94˚F (34.4˚C) were not Multiple Sclerosis friendly but by frequently applying a frozen bottle of ice water to the back of Patti’s neck, it worked like her personal air conditioning … and our air conditioned wheelchair van was nearby if needed.

To our pleasant surprise and as if conjured up by some ‘Americana’ movie set to complete our picnic, a 'small town America' Memorial Day program was being set up in the cemetery. People soon began to walk by us carrying folding chairs and coolers, scouts had flags and flowers. A small local brass band began to play military songs through the years.  

Still hangin’ out with George and Lydia, soon we found ourselves laughing and singing along to snippets from songs such as “It’s a Grand Old Flag”.

As the band finished their tribute to the Civil War including both Battle Hymn of the Republic and Dixie it was a perfect time for us to say goodbye.

What more can you say to a guy who had actually been at Appomattox Courthouse when the Civil War ended … except thank you.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

Return to normalcy

Wednesday, two months after successful lung cancer surgery, everything came back together for the first time. Our world returned to its normalcy.

In other words life is now just as it was before surgery, only 8 weeks later. I have no loss of abilities, restrictions, or pain.

Why should this benchmark start any different than any other caregiving day as I spent too many hours on the phone and on hold working and stressing as Patti’s POA on looming changes to Patti’s Medicare supplemental insurance?

With the cooler part of the day wasted it was time to mow the lawn, walking approximately a mile while pushing a 60 lb (27 kg) mulching power mower in 86˚F (30˚C) temps.

Next I drove to pick up Patti. Exiting her care facility assisted dining room she was quite sure her diner had been “bangin” but had no memory of what she had just eaten.

Heading out to a nearby park for a push and roll (a gentlemen never discusses a lady’s weight but let’s say Patti weighs more than a lawnmower) I pushed her for a one mile loop stopping for some hamming it up in their amphitheater, “all the world’s a stage”.

Then the pièce de résistance (insert drum roll)

… a one person unassisted transfer of Patti from her wheelchair to her bed, followed by undressing and changing her for sleep.

Unlike the miles of pushing, transferring is about lifting non-ambulatory weight. Even after transfer, while many people have changed and dressed an infant, a non-ambulatory adult is the exact same principal just exponentially more upper body strength involved.

It was a godsend that the care facility era was already in place before surgery and recovery took me out of the daily equation for two months. Patti was safe and completely cared for.

Though it’s a bittersweet return to normalcy for me as Multiple Sclerosis memory and cognitive symptoms confound Patti even realizing or remembering any loss in outings or absence of me transferring her to bed the majority of nights each week.

Normalcy? An interesting concept isn’t it?
Patrick Leer

BLOGS:

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

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

travels with a faux down vest

“A journey is a person itself; no two are alike.”

John Steinbeck, ‘Travels with Charley: In Search of America’

Visiting a neighbor and recent spouse caregiver widower we share surgery stories. With 9 hrs of back surgery and basically a titanium spine his trumps mine, though bittersweet, of course, since home caregiving for a spouse with RA (rheumatoid arthritis) made his surgery previously impossible.

Wearing my faux down vest to protect my ribs while driving, my return to my ‘road rat’ self was MCing the Prince George’s County Maryland Special Olympic Spring Games.  As if divine coincidence nothing could have been more motivating and rewarding than to be surrounded by heroes.

Returning I stopped to visit old friends. Surprised by the home accessibility modifications I realized I've been too wrapped up in my own life. A manly, man hug can often be an awkward dance until ALS (amyotrophic lateral sclerosis) prevents one of you from lifting his arms; I learned what it is to hug a friend.

Pushing Patti around an “Art Walk”, she could enjoy the magnitude of the art of an Italian street painter turned sidewalk artist. However since much of the art was staged in restaurants we soon disappeared into our favorite, Helena's Chocolate Cafe & Creperie for dinner. A chocolate raspberry crepe is art in our book!

With each lawn mowing and push of Patti’s wheelchair I feel the muscles strengthening even though Patti’s Multiple Sclerosis memory symptoms prevent her from remembering whether outings have increased or decreased

Driving three hours in the rain to visit cousins in New Jersey I sit down to dinner with two other cancer survivors. Still weird to think of myself as a ‘survivor’ and frankly I ‘am not worthy’ contrasted to my youngest cousin who was my inspiration through my darkest moments. Many kids turn 6 every year but this guy also celebrates his 5^th year cancer free since battling liver cancer and all the while living with Muscular Dystrophy.

After all how can I say that someone inspired me if I do not let them climb all over me and my ribs to really find out if they are healed after lung cancer surgery?  … Seems I do not need that faux down vest anymore.
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/

Multiple Sclerosis Caregivers 2012

Last Fall MS caregivers throughout the US, including myself and readers of Caregivingly Yours, participated in a research study about Multiple Sclerosis caregiving.

The results of that study were published last month in a 62 page report available on line in PDF format at:

Multiple Sclerosis Caregivers March 2012

Conducted by National Alliance for Caregiving, National Multiple Sclerosis Society, Southeastern Institute of Research and supported by Sanofi US.

Block out some time, get yourself a cup of coffee (or favorite beverage) and discover statistically who we are, what we do and how we each stand in the new idea of normal. 

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer 

UNLESS someone like you cares - wheelchair accessibility

Picnicking with McDonald’s french fries under sunny skies on a 66˚F (18.8˚C) afternoon only got better when followed by a movie and popcorn. In Patti’s world, after two decades of Multiple Sclerosis sometimes eating for taste trumps eating for health.

While dysphagia is always a clear and present danger at least these comfort foods require no assistance for self-feeding and are easy to monitor. Empowerment can also be a treat.  

"The Lorax" was 90 minutes of pure enjoyment, practically an animated musical. Of course there was a 'message' about protecting the environment but as with all Seuss stories the telling of the story is just so darn entertaining and fun.

While we are blessed to own a wheelchair accessible van that empowers Patti’s freedom, not everyone is. Perhaps even most families caring for some needing a wheelchair do not.

With budget cuts looming, people in wheelchairs, their caregivers and families that depend on subsidized public accessible transportation or contracted providers face an unknown tomorrow. Everything from access to medical care to independence to access to family and friends could shrink.

Like everywhere, Pennsylvania’s budget in these economic times is created with scissors. Gov. Corbett is proposing $620 million in cuts to human services programs; $422 million from basic education on top of the $765 million cut from last year’s budget, 20% cuts to colleges, 35% from State parks, and ‘zero funding’ for public transportation.

Yet this is democracy and these are ‘proposed cuts’ it is time for all interested parties to speak up and be heard. 


MS Awareness in particular is not about one month or one week a year or glitzy ad campaigns. It's about keeping your eyes, ears, and mouth open.

That’s why I found this most disturbing for it is the double whammy of cuts to social services and zero public transportation funding that could most affect the lives of those needing wheelchairs. “Able-bodied people had unfettered access to stairs and elevators that lead to Gov. Tom Corbett’s office on Wednesday. People in wheelchairs did not.” Disability activists targeted in enforcement of Pa. State Capitol's restricted access policy

"UNLESS someone like you cares a whole awful lot,

nothing's going to get better: it's not."

“The Lorax” by Dr. Seuss

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

dental health Multiple Sclerosis

Multiple Sclerosis does not make dental care easy.

Long story made short Patti was less than cooperative at her last failed checkup. Fortunately there is a positive end to this story.

Believe it or not there’s at least one dentist who prefers the freedom of not having an office practice, traveling between care facilities and nursing homes.

Rather than just leave it alone he called me with a plan.

What if … he revisited after Patti had been given a dosage of Ativan/Lorazepam beforehand, the proverbial “chill pill”. Adding me to the mix could improve success because in the care facility era “no means no” for professionals, only family/POA can ‘persuade’ a patient.

Arriving I transferred Patti to a geri-chair, a recliner on wheels.  I was blown away by the mobile dentist office set up, it had everything except musak.  (Rummaging about I found a boom box and a CD of new age music and fixed that.)

Patti (under the influence of Ativan) was a model patient and the dentist was a godsend. Patti’s dentist prefers the life of mobile dentistry. He loves its freedom and its focus on patients.

Patti’s teeth were cleaned, polished, and cavities filled. Only the high speed drill which sprayed water seemed to agitate her. I quipped it was just the tooth fairies waterboarding her. “Little bastards” she mumbled and with a smile her calm returned.

Afterwards, we talked about new solutions because status quo is not working. Apparently an electric toothbrush is a win-win because in a pinch it can be used simply with water, eliminating the whole rinse and spit challenge. Regardless of MS and all its challenges, dental care cannot be trivialized. Brushing teeth is social behavior. Visiting or outings should include teeth brushing rather than depend on staff, remember staff can be told ‘no I don’t want to’. Thinking outside the box is a must.

Since it was 60˚F (15.6˚C) afternoon in February, and the geri-chair fit in our wheelchair accessible van, I took Patti to the park in her rolling recliner for a reward before a well-deserved afternoon nap.  

Related previous entries:

a trip to the dentist (Jan 2006)

teeth brushing smiles (Feb 2009)

dental care Multiple Sclerosis (May 2010)

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

exercise, fitness, caregiving for Multiple Sclerosis

Across the years of caregiving, I’d guestimate I’ve pushed Patti’s wheelchairs at least 5,000 miles (8,000 kilometers).

Multiple Sclerosis caregiving is physical caregiving. Sure the pushing might sound dramatic but the heavy lifting is incalculable beginning with the first time I helped Patti off the floor after a fall to the non-ambulatory stage and one person unassisted transfers.

Not only have I had hernia surgery but aches and pains so common I joked that Bengay was eau de cologne for caregivers.  A ‘back brace support weight lifting belt’ and/or large pain relieving patches were too often simply part of getting dressed.

That is until a year and a half ago when I first discovered Planet Fitness, “Caregivingly Yours: are you fit to care / exercise”

“Exercise recommendations for someone caring for a loved one are no different than for anyone else. 30 to 40 minutes of moderately intense exercise three or more times a week.”

“Caregivers responsible for lifting loved one’s in and out of bed or chairs require a strong core.”

Hey! 90% of the time I’ve been a caregiver I viewed exercise as some hobby for the spandex clad bourgeoisie - some of us just learn slower.

Using the Planet Fitness 30 Minute circuit workout (a series of stations with lever-and-pulley machines for each major muscle group) I’ve not only been able to strengthen the specific muscles used to transfer and lift Patti but build better muscle harmony and no longer need the ointments and braces.

To train the ‘pushing engine’ it takes aerobic/cardio exercise and their variety of choices and bells and whistles is most appealing. When the same thing gets boring, I lose interest. These days I start with one mile on a treadmill with maximum incline to best replicate pushing a wheelchair up a grade and another mile on an elliptical or bike for cardio endurance.

As sweat stains your shirt you only need ask yourself - how many people do you know who will step in to push the person you care for up the hills and across the years?

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

91% of caregivers use Facebook

“91% of caregivers are using Facebook another 29% are using blogging sites …”

OMG I’m a tribal elder! While Facebook celebrates its 8^th birthday next month, I’ve been a spouse caregiver longer than there has been Facebook or even Google, longer than smart phones, matter of fact - longer than either cell phones or home PCs. Telephones had cords and neighbors would leave hand written notes in the door, “going to grocery store this afternoon, call if you need something.”

“… This provides a unique opportunity for marketers trying to sell healthcare products and services generally targeted to caregivers or for those trying to build goodwill from a Pharma corporate standpoint.” 

A century and a half ago Edgar Alan Poe asked, “Is all that we see or seem but a dream within a dream?” – Is today all that we see or seem but an opportunity to sell?

That’s a helluva a lot of people reaching out into cyberspace to try and find others like themselves, or trying to juggle the shrinking time for research or simply staying in touch as caregiving isolates.

Shouldn’t such phenomenal usage statistics be a unique opportunity for sharing and caring rather than marketing? Or am I simply naïve?

Through 22 years of spouse caregiving and juggling basically single parenting I’ve marveled in awe of the technological and scientific advancements of those two decades.

Yet also wondered why there are still so many caregivers? Why does Patti still have MS? Whatever happened to dreaming of things that never were, and asking why not? What if … we focused instead on ‘reducing’ the need for and cost of Big Pharma, health care products and services?

Am I the only one who finds it more than strange that the last time a disease (Polio) was defeated was before the computer age?

In a society where each day more people walk around staring into smart phones and walk right into Patti’s wheelchair, I am left wondering about the odds of hope for all that we see or seem to ever be all it could be. 

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

where sheep wear spandex / an MS outing

Whether care giving or needing care sometimes the best thing you can do is just go have some fun.

Laughing while spandex wearing sheep tried to eat Patti’s wheelchair we began our visit to the 2012 Pennsylvania Farm Show.

With 24 accessible acres(approximately 24 football fields) under roof, I cannot think of a more wheelchair friendly outing for January. (and excellent pushing and walking exercise for me) 

Enjoying two creamy chocolate milk shakes from PA Dairyman’s Association in search of the butter sculpture we decided to watch some honeybees in a glass observation hive at an exhibit by PA Beekeepers Association. Soon we found ourselves in a conversation with a beekeeper about bee stings and medicine. While most visitors took a step back from the weird people talking about stinging themselves, several lingered, listened, and asked questions in a spontaneous discussion about Patti’s eventually unsuccessful two years of Bee Venom Therapy for Multiple Sclerosis and the beekeeper who had found genuine success for his Rheumatoid Arthritis through apiatherapy.

It’s hard to miss 1,000 lbs (454 kg) of butter and we eventually found the sculpture. After the week long farm show the sculpture is given to a selected dairy farm where it is converted into electricity.

After a couple hours of checking out and often visiting up close and personal certainly every farm animal and crop in our imagination – well, we were hungry … hey, the theme was “from the farm gate to the dinner plate.”

Heading to the food court area we decided on Lamb Stew from PA Livestock Association with frozen maple yogurt topped with maple syrup for dessert from PA Maple Syrup Producers.

Lamb stew and frozen yogurt could not have been more dysphagia friendly and feeding Patti was no problem in the crowd of humanity, over 50,000 attend each day. Most people are shoving one thing or another in each other’s mouth anyway under the ‘try this’ principle of fine farm show dining.

Happy and fed Patti was ready for a long winter’s nap.

Fortunately between MS fatigue and her memory loss she would not have to fret about counting spandex clad sheep. 

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer