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 

videos: www.youtube.com/daddyleer

“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 22^nd 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 

videos: www.youtube.com/daddyleer 

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.)

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 

videos: www.youtube.com/daddyleer

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 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

ghosts of caregiving past

What do a 19^th Century stone mason, a painter, an engineer at a gunpowder plant, and a fireman have to do with National Family Caregiving Month? Probably not much - contrasted to their wives who gave birth to, raised, and kept house for families with an average of 7 children, long before disposable diapers or indoor plumbing.  

Yet without them I would not exist, these were my great grandparents. Born before the US Civil War some were immigrants, some from slave owning families, and some left home as teens to become ‘servants’. I’ve been stalking them with a 14 day free trial of Ancestry.com. However as spouse caregiving has dominated 36% of my life, eventually my eyes always look for clues.

“Caregiving is not new,” said Emily Abel, a professor at UCLA. “It has long been a normative experience in women’s lives.” In 19th century America it dominated their lives from “girlhood to old age”

21^st Century statistics report women make up 66% of caregivers. While I may be ‘the 33%’ now it was not that way when it began over two decades ago. Statistically males represented 10% of caregivers around 1990 and damn lonely especially lacking any traditions, literature, and frankly head butting against societal perceptions of male and female roles and skills. Simultaneously I was juggling basically single parenting our then toddler daughter. Even popular culture at the time portrayed men as bumblers in maternal roles.

Back to the future, President Franklin Pierce vetoed health care reform legislation in 1854 arguing that the law violated states’ right position. We are STILL arguing over what we expect our federal and state governments to do about health care.

With medicine able to prolong life where previously terminal (injuries, accidents, illnesses, war wounds…) - disabled Americans were reintegrated into communities and wheelchairs appear. The first US patent for a wheelchair was granted in 1869.

Sometimes a glance backwards frames perspective and more importantly reenergizes the potential ahead.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

almost stone age caregiving

Keep in mind reading this entry that for the people referenced, today begins their 5th day without electrical related services.

In one New Hampshire town, 140 or so elderly and wheelchair using residents are trapped on the upper floors of a building because the elevators aren’t working. No power real concern for wheelchair-bound on upper floors

In Pennsylvania, “A tractor motor turns the generator that powers the breathing machine …She has Lou Gehrig’s disease, and her tenuous lifeline has been in place since Saturday. That’s when a rare October snowstorm knocked out power to homes …” Power outages from Saturday's snowstorm are threat for people with medical problems

In New York, “Visiting Nurse Service aide rushed around the dark house looking for a flashlight to set up a backup device that does not need electricity … It was already too late.” Halloween weekend snowstorm outage claims Bronx great-granny; lost oxygen during power failure

Are home generators the answer if you live with medical needs?

In Connecticut, “It is the latest of three carbon monoxide deaths since Saturday's massive winter storm” Carbon Monoxide Claims Another Life

In Massachusetts, “The state fire marshal says two people are dead in Palmer in what is believed to be carbon monoxide poisoning” 5 people killed in Mass. after October storm

Think having a ‘medical certification of emergency’ on file with a power company means something? – A spokesman for First Energy, parent company of Met-Ed, said “medical declarations are noted by the company but the thousands of outages from the storm make prioritizing a specific customer impractical.”

Probably too often I use a phrase “the tip of the iceberg”. Media focuses on the most dramatic. Countless others, among the over 1.5 million still without power, challenged with living with disabilities, chronic illnesses and of course their caregivers are also facing their 5th day of almost stone age living and caregiving.

November is National Family Caregiver Month and I for one find these unsung efforts heroic.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com