Monday, December 26, 2011

reindeer flying drunk vs MS

Memories of Christmas morning broke new ground this year with a phone call from Patti’s care facility that she had been found on the floor next to her bed about a half hour before dawn.

After physical and neurological examination she appeared OK and had no complaints nor remembered anything. Of course Multiple Sclerosis related memory loss, Patti’s MS short circuiting of pain neurotransmitters and probable shock confounded examination.

Incoming day shift found her during 7 AM ‘observation’. Overnight shift reported her asleep in bed at the previous hour’s 6 AM check.

Nursing staff wanted to keep her up and alert, just in case (some kind of concussion protocol), and on priority monitoring and evaluation. After a couple hours – a bruise beginning to develop on her knee was the only observable concern.

Continuing with plans to pick Patti up for Christmas Day with family still seemed the best of possible ideas.

All things considered, in fact, Patti was firing on all cylinders right through the day. Patti never gets up as early as 7 AM and has not gone without at least one mid-day nap for at least a decade. She was beyond impressive for someone who began the day falling out of bed, participating with over a dozen family members in Christmas Day festivities .

After about the umpteenth time of pestering her if she remembered anything about how she ended up on the floor - she turned to me while riding in the van and said, “the damn reindeer were flying drunk.”  

You got to love it!

For the First Day of Christmas, I do know that Patti is getting the return of two bedside fall mats and that beginning last night her high-low mechanical style bed will be lowered to as close to the floor as possible when sleeping, about a foot (30.48 cm) off the floor.

Caregivingly Yours, Patrick Leer 

Tuesday, December 20, 2011

no one can serve two masters / MS meds

from today’s Washington Post:

“…I knew that I had felt pressured by him to take medications. When I found that he had been paid six times my yearly salary to work for the manufacturers of those same drugs, my loss of faith was complete … having MS is difficult enough. The last thing I needed was to worry about whether my neurologist was acting in my best interest…”

Caregivingly Yours, Patrick Leer 

Monday, December 19, 2011

disability perspective / MS

Q ...What is a disability perspective?
A ... disability perspective is a viewpoint that considers the needs and 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 of it.  “Christmas by the Lake” hosted by the Boiling Springs High School Alumni Association could not have been a more enjoyable winter outing.

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

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

Our push and roll around the lake was mesmerizing with hundreds of real luminaries plus a fully lit Christmas Tree floating in the lake. Patti in her wool cape, mittens, hat and buggy bag wheelchair lap blanket declared she was “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 street for a block, the reflective strip on Patti wheelchair lap blanket shone like a beacon in the lights of approaching cars.

Christmas music filled the air, Santa roamed about ho ho hoing and chestnuts and 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 hot chocolate and cookies but that was ‘no problemo’, they were delicious.

Horse drawn carriage rides were also available but we did not explore as rarely are they easily accessible and Patti could care less - she already has me, her trusty one-man open sleigh horse.
Now the same event as reported by mainstream media … Lights line the lake in annual Boiling Springs event
12% of Americans are affected by disability, add in their caregivers and families and you are talking about a quarter to a third of any community’s population.

Including disability perspective into news or promotions is not about political correctness, it is inclusive and welcoming to people of all abilities.

Caregivingly Yours, Patrick Leer 

Saturday, December 17, 2011

dreaming of a purple Christ…MS

Decades ago, maybe even the last time Patti ‘walked’ into a church, we had a Christmas tree lit with all purple lights. Our young daughter, along with all the children, was invited up to the altar to talk about Christmas. Long story made short the kids were asked about Christmas lights. When Megan offered purple, the minister corrected her pointing out there is no such thing as purple Christmas tree lights.

A harbinger of what she would face in school when teachers would mis-teach Multiple Sclerosis either working from out of date textbooks or sharing mild MS as an example.

It would not be until her senior year of high school that Megan actually had a teacher who personally knew what growing up living with severe MS was about. She, like Megan, had spent her youth with a Mom in a wheelchair dependent on others.

Lack of awareness by others is part of living with MS as a family, affecting not only the mysterious diagnosis but equally significantly the daily life of all family members.

Holidays are a good time for common denominator examples. ‘Normals’ put a tree in a stand and admire, while living with MS you discover you need to secure the Christmas tree as stable as a grab bar. Patti has pulled more than one tree down on herself while trying to be involved. For years I secured our conventional tree stand to a square of 3/4” (19 mm) thick plywood. Several years ago I simplified and bought a 30 lb (13.6 kg) steel stand with a leg span of almost 3’ (.9 m) made by Bowling Enterprises of Bear Lake, MI.
Being no longer able to stand, legally blind, failing eye hand coordination, and down to use of only her right arm - were you to overhear our ‘assisted’ decorating you might be surprised at the laughter of involvement.   

Purple is not only Patti’s favorite color but a combination of contradictions, hot red and cool blue. Perhaps not traditional Christmas but then again living with MS as a family we jumped that traditional track long ago.

Caregivingly Yours, Patrick Leer 

Tuesday, December 13, 2011

winter wheelchair tips for caregivers 2011

In a wheelchair Patti does not generate the same body heat as a walking person. Cognitive impairment only adds to risk when outdoors in any weather.

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

While winter embraces all, it does demand caregiver / carer respect. Our story is about Multiple Sclerosis however winter weather does not discriminate over diagnosis.
Lower body for a non-ambulatory person is most vulnerable. 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 of socks, 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 become a winter mainstay but its all-weather features have made it all year rain gear.

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

For outerwear we depend upon a hooded wool zippered cape. Capes are easier for getting on and off when assisting someone in a wheelchair and a zippered cape simply increases options. Hoods are easy to flip 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 warmth even when it is wet.

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

Mittens ‘rock’! Rather than struggle to fit her fingers 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 

Friday, December 09, 2011

National Multiple Sclerosis Act of 1949

“But to watch someone close to you become a hopeless, helpless paralytic and to know that medical science is powerless to halt the progress of this disease, is something no person should be called upon to endure” 

“May 11, 1949 Washington DC – Mrs. Lou Gehrig, blue eyed widow of baseball’s “iron horse” urged Congress yesterday to finance a campaign against Multiple Sclerosis which cut down her husband at the peak of his fame.

Several victims of the crippling malady sat in wheelchairs listening …”

Republican Senator Charles Tobey of New Hampshire, whose daughter had MS, sponsored the bill. Tobey declared, “We cannot take this thing laying down. There is enough money in this country to take care of this job. … God will hold us responsible unless we try to do something for them.” Emerging Illnesses and Society: Negotiating the Public Health Agenda” by Randall M. Packard 

National Institutes of Health (NIH) opposed the formation of a separate institute for MS and the legislation never passed. Instead the idea was folded into a then unfunded directive to the Surgeon General to set up a National Institute for Neurological Diseases and Blindness and the National Institute for Rheumatism and Metabolic Diseases.  

It’s interesting that media reporting of 62 years ago interchanges MS (Multiple Sclerosis) and ALS (Amyotrophic Lateral Sclerosis) especially since ALS would become known colloquially as ‘Lou Gehrig’s Disease’. Then again public awareness remains a problem.

Most of all I am struck by the loss of moral imperative in approaching disease. Then a nation that not only believed “in God we trust’ but “God will hold us responsible unless we try …”

Caregivingly Yours, Patrick Leer 

Saturday, December 03, 2011

losing my mojo / MS caregiver

Putting up this year’s Christmas decorations I was struck by how much I’ve lost my mojo through 22 years of Multiple Sclerosis spouse caregiving.

Medical science monitors progression of an illness or disability but ignores that the family also progresses. Then again how do you measure downward economic and social mobility? How do you measure a childhood sacrificed? How do you measure the physical and emotional toll of choice? How can you even explain it when you put ‘care’ before all the other understandable motives such as life, liberty, and the pursuit of the happiness of career, income, and all the trappings of normal life? … How do you measure the loss of a caregiver’s mojo?

The following 20 second video captures what our yard looked like at Christmas time in the earliest years of juggling MS caregiving and basically single parenting.
Believe it or not that’s even scaled down from my pre MS caregiving lawn decorations. Whether you are a fan of excessive Christmas decorations or not, what is important is it was ‘me’ – I enjoyed it I - my mojo was running on full throttle.

Pictured below is now – two decades later …
While my blow mold plastic may be considered vintage to some, I’m quite sure I’m hearing polyethylene whispers about losing my mojo.

Caregivingly Yours, Patrick Leer 

Monday, November 28, 2011

dysphagia, yes / dysfunctional meals, no

Written from my perspective, the caregiver’s view, Patti has MS related chewing and swallowing challenges. Memory loss and cognitive impairments act somewhat like an eraser on Patti’s ability to relate her own experience.

How something is defined versus how it affects someone are really two different things.

A meal centered holiday like Thanksgiving literally and figuratively brings dysphagia to the table.

This year was the first year I needed to feed Patti at the table following years of her increasing struggles to try to feed herself.

Amplifying this year’s focus on the challenges of chewing and swallowing I found myself the following day in an enlightening though poignant conversation with a cousin about her own and her son’s challenges with dysphagia associated with muscular dystrophies.

In Patti’s case it’s about the central nervous system in theirs it’s muscular. Nor is dysphagia exclusive to MS or Muscular Dystrophies – Alzheimer, Parkinson, and strokes to name a few. Even some medications and aging itself can complicate the complex combination of voluntary and involuntary muscles we know as chewing and swallowing and that most of us take for granted.

However none of us started out by taking it for granted. Any parent fondly remembers their time spent teaching a baby to eat from a spoon or chew solid food.

Do we fondly or alarmingly view the reverse?  How many people at the table can actually recognize choking and assist?

In Patti’s case, MS related, for example she may appear to be choking. Yet if familiar you would know that if a person appears to be choking yet talking (yes, even cursing and swearing) or coughing a dramatic interference such as Heimlich maneuvers might actually make things worse.

Speaking of the Heimlich maneuver how many at the table actually know when and how to do it? What about with special circumstances, such as a wheelchair?

Perhaps it should be about eating comfortably. Sharing a meal with people you do not have to educate or explain why you eat the way you eat and knowing they’ve ‘got your back’.

Caregivingly Yours, Patrick Leer 

Tuesday, November 22, 2011

“Think you can make it, pilgrim?” / MS caregiver

When the 53 surviving Pilgrims celebrated their successful harvest in autumn of 1621, I suspect that even in their wildest imaginations none could ever have foreseen the future rite of passage for kids and parents known as the school Thanksgiving play.

Certainly Patti never imagined she would watch seated in an electric scooter as our daughter played a Pilgrim mother who gave birth onboard the Mayflower.

Here in the now, this will be the 22nd year that Thanksgiving is infamously intertwined with the dawn of living with Multiple Sclerosis as a family.

My memories of morning cooking aromas, leaf piles, and the Macy’s Parade on the TV were shattered looking into the fear in Patti’s eyes as she awoke that morning in 1989 realizing she could not walk, and could barely see or talk.

Waking up Thanksgiving morning should not be a watershed moment in one’s life.

Four years earlier Patti had a brief period of numbness and tingling in some fingers. With symptoms ending sooner than tests, a diagnosis of “probable” Multiple Sclerosis while devastating in the moment seemed less probable as time passed.

Years passed, no symptoms returned. Life was good; homeowners, two jobs, two cars, ‘two cats in the yard’ and a healthy happy daughter. 

Absolutely underprepared for what was happening that morning, somehow I found Patti’s neurologist’s number and called. Duh! It was Thanksgiving morning of course he was unavailable. An associate returned my call, arranging hospital admission.

Simultaneously our 18 month old daughter was stirring and ready to get up. While I had been as involved, if not more than involved, for a guy in the late 1980’s I had not been the lead parent much less ever have juggled parenting and caregiving.

I never felt more alone and overwhelmed.

“Think you can make it, pilgrim?” John Wayne

Caregivingly Yours, Patrick Leer 

Saturday, November 19, 2011

Economic Costs of Multiple Sclerosis

(guest post by Elaine Hirsch)

According to a 2010 report entitled “Global Economic Impact of Multiple Sclerosis” compiled by the Multiple Sclerosis International Federation, Multiple sclerosis creates substantial economic costs for the economies of nations where there are large numbers of MS patients. Statistics from the report show that fifteen countries, including the United States and Germany, reported an average annual cost of $41,335 or more for each MS patient.

A study published in the same year, “Economic Impact of Multiple Sclerosis in 2010,” sponsored by Multiple Sclerosis Research Australia, showed the economic impact of MS on just one national economy. Australian researchers, using an average cost of $48,945 per Australian patient suffering from MS, calculated that Australia’s 21,200 MS patients cost the national economy a yearly total of approximately $1.038 billion, up 58 percent since 2005.

Measuring the medical costs of MS patients is not easy, because the severity of MS symptoms varies from one patient to the next; some patients having only transient attacks, such as occasional blurred vision and fatigue, while other patients may become partially or completely paralyzed, as described in “Multiple Sclerosis: Just the Facts,” a brochure published by the National Multiple Sclerosis Society of America.

Australian researchers compensated for the variation among MS patients’ conditions by breaking down care costs into many small categories. Prescription medication and other medical necessities, such as nursing services, caused the highest costs for patients, but the cost of informal care, provided by family, friends and other private caretakers, jumped from $99 million in 2005 to $145 million by 2010.

The report noted that tabulating dollars for items such as hospital stays did not show the true human cost of MS in Australia. Commonly misunderstood, economic costs typically extend beyond the direct inputs to patient care for MS patients. For example, researchers stated that the “cost of informal care contributed 14% of the cost per person with MS while [employment] productivity losses contribute[d] 48% and was the highest single element of cost.”

The financial cost of time spent by family and other helpers caring for MS patients and the loss of employment opportunities experienced by MS patients because many patients and caretakers are forced into early retirement are not as visible as money spent on wheelchairs, but these factors represent enormous emotional and financial losses to the patients, their families, their friends and the Australian economy, losses that are escalating as the number of MS patients steadily increases. 

(Elaine Hirsch is kind of a jack-of-all-interests, from education and history to medicine and videogames. This makes it difficult to choose just one life path, so she is currently working as a writer for various education-related sites and writing about all these things instead. She is currently a writer for a master's degree resource.)

Wednesday, November 16, 2011

a time for ... truing (wheelchair wheels)

For several weeks, the right wheel on Patti’s wheelchair had been misbehaving, increasingly rubbing against the chair creating everything from annoying sounds to resistance.

More significantly for Patti, the only arm she can still use is her right and this one ability could not be compromised.

Chasing my tail, time and effort was continually misdirected looking for solutions whether through her care facility physical therapy department, researching replacing the wheel and or wheelchair itself and banging heads with insurance, or even tinkering myself. (While wheelchairs have been part of family life for over 15 years, I’m not a real mechanically oriented person and tend to ‘argue’ with inanimate objects.)

Confounding the process, Patti in the chair could never remember the problem.
“If you don't feel you can handle simple wheelchair repair preventive maintenance yourself, you should always ask a friend, neighbor, or family member to help you.”
Visiting with Patti’s family on Sunday her father and brother took a crack at the wheel and I entered a world I never knew existed - the land of spokes.

Her brother went right to “truing the wheel”. Spokes actually push and pull a rim while a wheel rolls. Proper tension keeps the wheel round and straight. A younger version of him learned these skills working on motorcycles. 

Lacking a proper shop, instead spinning the wheel on the wheelchair axel as the chair lay on its side, he found the high spots in the rim and corrected by tightening and or loosening corresponding spokes in low spots. … and all this accomplished while Patti sat and played games at the table in another wheelchair with her Mom and our daughter. Truing time can be family time.

Patti originally chose her wire wheels because she liked the look.  Mag wheels, I’ve learned, are allegedly maintenance free while wire wheels require spokes to be adjusted periodically to insure proper tension. My Bad!  

While Patti’s wheelchair now comfortably rolls, I’ve learned that even this caregiver approaching his 22 anniversary of MS caregiving can use some truing - “ask for help” rules!

Caregivingly Yours, Patrick Leer 

Friday, November 11, 2011

We are … what we remember

Caregiving and Multiple Sclerosis can bump into semantic walls. Short term memory loss, cog fog, or dementia may be just words to some, but to others - them’s fightin’ words.

Yet MS symptoms can affect intellectual and social abilities. Sometimes this is easier to demonstrate as a caregiver through a thread of current events.

Patti surprised me Tuesday evening when I picked her up for an outing asking me about the Penn State scandal which I had read to her about on Monday. I try to make the time to read newspapers to her and ask her questions about the stories as an ongoing informal cognitive rehabilitation.

She never has recall over a day anymore, I was stunned. Yet before beginning a victory dance I realized that Patti is a Penn State alum and both long term and short term memory must be coming together in some kind of cognitive cauldron here.

Additionally ‘we’ had attended several football games together at Penn State's Beaver Stadium in the distant past. I am a U of Maryland alum and our respective universities had a football rivalry.

As a visitor I had always found Penn State a world unto itself. When 100,000+ people begin shouting in sync their signature shout and response cheer “We are … Penn State” it’s eerie.

Intuitively, now in 2011, I experimented with talk radio while driving. Needless to say the topic was the Penn State scandal.

Patti was so involved with the program I was captivated. Not only was she following it but remembering previous callers and periodically verbalizing her own two bits. Most impressive to me was her focus on the victims not the fall out. It was frustrating to see flashes of the person that was, yet discover she could not tell me what she had just had for dinner or where we were going.

Could this cauldron of long and short term memories keep breaking through? Picking her up after a 48 hr gap, Patti remembered nothing about it. It was all new to her.

We are … what we remember.

Caregivingly Yours, Patrick Leer 
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