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’sworld, after two decades of Multiple Sclerosis sometimes eating for tastetrumps eating for health.

While dysphagia is always a clear and present danger at least thesecomfort 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, practicallyan animated musical. Of course there was a 'message' about protecting theenvironment but as with all Seuss stories the telling of the story is just sodarn entertaining and fun.

While we are blessed to own a wheelchair accessible van that empowersPatti’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 caregiversand families that depend on subsidized public accessible transportation orcontracted providers face an unknown tomorrow. Everything from access tomedical care to independence to access to family and friends could shrink.

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

Yet this is democracy and these are ‘proposed cuts’ it is time forall 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 whammyof cuts to social services and zero public transportation funding that couldmost affect the lives of those needing wheelchairs. “Able-bodied people hadunfettered access to stairs and elevators that lead to Gov. Tom Corbett’soffice 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 failedcheckup. Fortunately there is a positive end to this story.

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

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

What if … he revisited after Patti had been given a dosage ofAtivan/Lorazepam beforehand, the proverbial “chill pill”. Adding me to the mixcould improve success because in the care facility era “no means no” forprofessionals, 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 dentistoffice set up, it had everything except musak. (Rummaging about I found a boom box and a CD of new age music and fixedthat.)

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

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

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

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

Related previousentries:

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’vepushed Patti’s wheelchairs at least 5,000 miles (8,000 kilometers).

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

Not only have I had hernia surgery but achesand pains so common I joked that Bengay was eau de cologne forcaregivers.  A ‘back brace support weightlifting belt’ and/or large pain relieving patches were too often simply part ofgetting dressed.

That is until a year and a half ago when I firstdiscovered 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 ofmoderately intense exercise three or more times a week.”

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

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

Using the Planet Fitness 30 Minute circuitworkout (a series of stations with lever-and-pulley machines for each majormuscle group) I’ve not only been able to strengthen the specific muscles usedto 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/cardioexercise 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 onemile on a treadmill with maximum incline to best replicate pushing a wheelchairup a grade and another mile on an elliptical or bike for cardio endurance.

As sweat stains your shirt you only need askyourself - how many people do you know who will step in to push the person youcare 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 celebratesits 8^th birthday next month, I’ve been a spouse caregiver longerthan there has been Facebook or even Google, longer than smart phones, matterof fact - longer than either cell phones or home PCs. Telephones had cords andneighbors would leave hand written notes in the door, “going to grocery storethis afternoon, call if you need something.”

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

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 wesee or seem but an opportunity to sell?

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

Shouldn’t such phenomenal usage statistics be aunique opportunity for sharing and caring rather than marketing? Or am I simplynaïve?

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

Yet also wondered why there are still so manycaregivers? Why does Patti still have MS? Whatever happened to dreaming ofthings 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 thanstrange that the last time a disease (Polio) was defeated was before thecomputer age?

In a society where each day more people walkaround staring into smart phones and walk right into Patti’s wheelchair, I amleft wondering about the odds of hope for all that we see or seem to ever beall 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 sometimesthe best thing you can do is just go have some fun.

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

With 24 accessible acres(approximately 24 football fields) under roof, I cannotthink of a more wheelchair friendly outing for January. (and excellent pushing and walking exercise for me) 

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

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

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

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

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

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

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

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

Despite MS, to Spite MS

How unique is this book? In the forwardJennifer Digman shares her research that there are 2,100 books on MultipleSclerosis but only 5 about Multiple Sclerosis love stories.

How unique was reading this book? Because of MSsymptoms Patti cannot read nor can she remember in the short term which in turnaffects attention span. Reading it to her pieces of chapters at a time over theholidays was beyond interesting, at times outside my imagination.

At one moment I’m reading to Patti about DanDigman who transfers his wife Jennifer from her wheelchair with the same oneperson unassisted transfer as I use for Patti except the guy has MS. Not onlyhas MS but runs an 8K race in 43 minutes – damn, this guy is in far bettershape than me and I do not have MS.

While Patti, who does have MS, makes skeptical soundsabout a think positive snippet in one breath, laughs along with Jennifer’s takeon something from their shared wheelchair view perspective in the next breath,and then abruptly decides she just wants to go to bed. MS attention span can bedizzying to deal with.

Spacing chapters are haiku poems by Judy Williams who also has MS. These capture Patti’s attention causing spontaneous commentsand observations, a couple times leaving me to see the poem differently.

If ever I doubted it, this experience ofreading “Despite LS, to Spite MS” with Patti has proven that Multiple Sclerosisis less a diagnosis and more a collection of Multiple Stories.

And, Now, We Pause for a Brief CommercialMessage . . . Click “Despite MS, to Spite MS” to order.  A portion of the proceeds will benefit the National Multiple Sclerosis Society andCamp Courageous.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

disability perspective / MS

Q ...What is a disability perspective?

A ... disability perspective is a viewpoint that considers the needsand aspirations of disabled people and their families.

I offer as an example a tale of two stories...

“Christmas By The Lake” Boiling Springs, PA

When surreal becomes real, you’re just glad you were part ofit.  “Christmas by the Lake” hosted bythe Boiling Springs High School Alumni Association could not have been a moreenjoyable winter outing.

Upon arriving we found wheelchair van accessible parking availablein front of Appalachian Trail Conservancy.

Lowering our van ramp we found ourselves also in the staging areaof the Pioneer Girls (a variation of Girl Scout Daisies) and parents. Our‘transformer’ van quickly became show and tell to young inquiry minds who inturn shared with us all their exciting adventures lighting the luminaires. Welaughed and smiled as the curious ‘heart of childhood’ embraced differences sohonestly and innocently.

Our push and roll around the lake was mesmerizing with hundreds ofreal luminaries plus a fully lit Christmas Tree floating in the lake. Patti inher wool cape, mittens, hat and buggy bag wheelchair lap blanket declared shewas “quite toasty” in spite of a ‘real feel of 29˚F (-1.6˚C)’.

When we needed to abandon the path and use the side of the streetfor a block, the reflective strip on Patti wheelchair lap blanket shone like abeacon in the lights of approaching cars.

Christmas music filled the air, Santa roamed about ho ho hoing and chestnutsand marshmallows were available for roasting over a fire pit.  Everything was free including hot chocolate,hot dogs, and Christmas cookies. MS symptoms of dysphagia restricted us to hotchocolate and cookies but that was ‘no problemo’, they were delicious.

Horse drawn carriage rides were also available but we did notexplore as rarely are they easily accessible and Patti could care less - shealready has me, her trusty one-man open sleigh horse.
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Now the same event as reported by mainstream media … Lights line the lake in annual Boiling Springs event
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12% of Americans are affected by disability, add in theircaregivers and families and you are talking about a quarter to a third of anycommunity’s population.

Including disability perspective into news or promotions is notabout political correctness, it is inclusive and welcoming to people of allabilities.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

winter wheelchair tips for caregivers 2011

In a wheelchair Patti does not generate thesame body heat as a walking person. Cognitive impairment only adds to risk whenoutdoors in any weather.

Speculating on how fast it takes forhypothermia to set in is a fools’ question. … Prepare!

While winter embraces all, it does demandcaregiver / carer respect. Our story is about Multiple Sclerosis however winterweather does not discriminate over diagnosis.

Lower body for a non-ambulatory person is mostvulnerable. Last winter was a benchmark when we received a gift of a buggy bag® wheelchair lap blanket. All the time and stuff involved such as layers ofsocks, leg warmers, boots, and blankets disappeared. It’s almost like the BC /AD line in our history of winter living with MS. Not only did it quickly becomea winter mainstay but its all-weather features have made it all year rain gear.

It’s easy to say “wear several layers ofloose-fitting clothing”. However when someone is unable to dress themselvesthis can get beyond interesting. A sense of humor is most helpful. 

For outerwear we depend upon a hooded woolzippered cape. Capes are easier for getting on and off when assisting someonein a wheelchair and a zippered cape simply increases options. Hoods are easy toflip up or down, cover everything except the face and are always attached.While wool is ‘old school’ it still has the unique ability to provide warmtheven when it is wet.

While a hat and scarf are often recommended Ihave concerns about mixing scarves and wheelchairs, though I have learned ofthe ‘infinity scarf’ for those wanting style without the ends that could catchin wheels. Hats work OK but are easily misplaced and can create some serious ‘electrichair’ styles.

Mittens ‘rock’! Rather than struggle to fit herfingers into gloves Patti just slides her hands into warmth.

Most importantly remember your carer /caregiver self especially your foot wear on snow or ice-covered sidewalks, ramps,driveways, etc. Fashion is arbitrary, falling is unacceptable.

Being prepared separates ‘disability forced hibernation’from enjoying winter to its fullest!

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer