deafening silence of Multiple Sclerosis awareness

Unless we stumble over it, we literally and figuratively see whatis in front of us.

Most people might never see Multiple Sclerosis because the generalpopulation has <1% chance of having MS.

Additionally, of those diagnosed with MS the majority may havesymptoms “invisible” to strangers.

Prevalence invites awareness and MS remains rare especiallycontrasted to cancer, heart disease, Alzheimer’s, stroke, or diabetes. Can thesound of one voice in 700 (the statistical incidence of MS) hope to be morethan a silent scream?

Soooo, am I the only one noticing that Multiple Sclerosisprevalence is totally out of statistical whack when viewed in the context ofour current US Presidential Primaries.

Ann Romney, wife of MittRomney, was diagnosed with Multiple Sclerosis in 1998.

Marianne Gingrich, formerwife of Newt Gingrich, reports Newt asked for divorce just months after she hadbeen diagnosed with Multiple Sclerosis.

And on the other side …

US First Lady Michelle Obamawas raised living with Multiple Sclerosis, her father had MS.

This is an extraordinary andexceptional alignment of MS awareness, yet do you hear it?  

27 years ago I, like most, had never seen or even heard of MS. Myawareness began when I saw Patti’s tears and heard her sobbing, “the call”. “…Thecaller explained Patti was crying uncontrollably and could I come get her. … Uponarriving I found Patti still crying alone in an examination room. Herneurologist appeared and explained he had told her that “she probably hasMultiple Sclerosis…”

Like comets that travel through once in a lifetime perhaps neveragain will Multiple Sclerosis be a part of the lives of so many major playerson our public stage.

In the USA, the Month of March is designated for Multiple SclerosisEducation and Awareness. Open your eyes and ears.

National Multiple Sclerosis Society MS Awareness Week 2012

Multiple Sclerosis Foundation MS Awareness Month 2012

Multiple Sclerosis Association of America


* * * * * * * * * UPDATED

Following death of former “Monkees” star Davy Jones of a heartattack on Feb 29, The Hollywood Reporter reports Jones' family is asking for donations tobe made to the National Multiple Sclerosis Society or a local chapter. Jones'niece died from complications stemming from multiple sclerosis 17 years ago.

Maybe the silence isn't so deafening after all. 

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

Mental Health Day at the Capitol 2012

Teen tied and shocked for hours; mom calls it "torture"

Teen tied and shocked for hours; mom calls it "torture": MyFoxBOSTON.com

when more than homecare is needed Multiple Sclerosis

From Multiple Sclerosis Foundation’s MS Focus Magazine, Winter 2012(pages 43-45):

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pg 44

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pg 45

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

Chang Shan vs Multiple Sclerosis

"A new study suggests the Chinese herb known as Chang Shanselectively weakens the runaway immune response implicated in many autoimmunedisorders, such as rheumatoid arthritis, multiple sclerosis, and psoriasis."

As we begin this 27^th year since Patti’s diagnosis of MS,I wish I could embrace hope with the enthusiasm of a quarter century ago.

Now before everyone goes digging up neighborhoods, nurseries, andbotanical gardens for roots of blue evergreen hydrangea let’s take a moment.

At the risk of oversimplifying … Our healthy immune system dependson T Cells. ‘Rogue’ T Cells have long been considered a culprit with MS. ‘Rogue’T Cells cannot distinguish friend from foe and target the body’s own myelin asif it were a bacteria or virus. Finding a way to suppress the ‘rogue T Cells’without suppressing all T Cells has been the challenge.   

Back in July 2009 …

Compound from Medicinal Herb Thwarts Turncoat Immune Cells “A smallmolecule (halofuginone) better known for its anti-malarial properties can blockthe birth of the immune cells involved in autoimmune diseases without blockingcrucial infection-fighting cells”, report Harvard Medical and Dental Schoolresearchers.

Now in Feb 2012 after peer review and further retesting ...

“We recently demonstratedthat halofuginone (HF) …inhibits the development of TH17-driven autoimmunity ina mouse model of multiple sclerosis” Halofuginone and other febrifugine derivatives inhibit prolyl-tRNA synthetase

With publication in Feb. 2012 Nature Chemical Biology,associated media and more are picking up the story.

Again at the risk of oversimplification, Chang Shan is the herbalform, Halofuginone is the synthetic.

Interestingly back in 2003, SunCatcher Herbs, developed Sclero-Eze,a herbal supplement that uses Chang Shan as a base. Their website announces “mayTreat - Rheumatoid Arthritis - Scleroderma - Lupus - M.S.”

From a quarter century of experience I can share that breaking researchon mice can take a decade before availability to humans, if ever. On the otherhand while the herb is available it was not the herb that was tested.

However, no one can imagine another’s hope.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

Valentine’s Day Memories: good, bad, and ugly

As a caregiver spouse Valentine’s Day is at best a one sidedexercise. Yet marketing drives society and well look around theannual emotional ‘carpet bombing’ has begun.

Progression of Multiple Sclerosis symptoms both physical andcognitive long ago eliminated ever receiving any Valentine’s Day gift, gestureor even remembrance.  It’s such a‘healthy couple only’ media blitz it only leaves me feeling more isolated andalone than usual. The caregiver perspective is expressed well in “Valentine's Day - Fleeting Fluff” by Terri Corcoran.

Maybe it always was illusion? As a college student I double datedwith a friend on Valentine’s Day. Splurging on the memorable kind of restaurantit seemed a night and place framed for romantic love. Until my buddy decided toseize the moment to announce he was breaking up with his girlfriend.  

Also long ago in my years on the road I knew someone who fallinghead over heels in love with a woman drove hours with that seething passion andimagination of romantics to surprise her and ask her to “be mine” forever onValentine’s Day. She instead surprised him, having settled down with her ‘truelove’ and asked him to leave her alone before he ever opened his mouth.

Maybe romantic love isn’t an illusion but a delusion?

Valentine’s Day also is not really even a holiday. Companies,schools, and governments go about business as usual. My Mom’s body was crematedon Feb 14^th. There’s a figurative coffin nail in Valentine’s Daymemories.

In all fairness there are some good memories. My Aunt and Unclewere married on Valentine’s Day. They celebrated over 60 wedding anniversarieson Valentine’s Day before death interupted the romance.

For almost two decades I’ve been involved with a Special OlympicsValentine’s dance for high school age special needs students unlikely to experiencetraditional school dances. no diagnosis on the dance floor

And for whatever reason snow storms and blizzards enjoy visitingaround Valentine’s Day and I could not be happier. Snow is nature’s “hug me”!

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

Happy Birthday PSWC!

care facility cabin fever

“loneliness, helplessness and boredom are the three plagues oflong-term care”  Eden Alternative

“Don seemed to me to begoing downhill, and a couple of the staff also suggested that he wasdeteriorating. …Then the head nurse came up with a different theory and adifferent solution … Don’s got cabin fever, that’s all. … Here’s the thing. …  It only took a day or two, and Don was back tohimself again.”  Multiple Sclerosis Carer: Stir Crazy

Recently I found myself in a similar situation with Patti anddinner. She was ‘reportedly’ finishing less of her meals and just wanted to goto bed. I began moving up my arrival time to be there to help with dinner. 

One such meal stands out. Arriving I saw Patti had finished her entreand overheard her yucking the aide’s offer of her fruit cup or potato soup andthat she ‘just wanted to go to bed’.

Noticing the fruit cup was diced pears and peaches, two of Patti’sfavorites – I rephrased the question ‘would you like some cut up pears andpeaches’ with a totally different response. Of course, how could the aide knowPatti’s favorites?

Soup is a function of temperature more than taste to Patti. Hot isnot appealing. Hey we’re talking about cream of potato soup here. The cooler itgets, the more pretentious it becomes. Rolling out my best bad French accent, Pattienjoyed her ‘vichyssoise’ assisted by zee crazy french waiter.

Instead of another unfinished meal, there was not a crumb left nor did Patti 'just want to go to bed'.

“… increased family involvement is positive and leads to quality oflife and quality of care for residents…” National Institutes of Health Family Involvement in Residential Long-Term Care

If the testimonials of two Multiple Sclerosis spouse caregivers, a long term carenon-profit, and NIH is not enough - then consider that even circling sharks pauseto stress the importance of family involvement. Boston nursing home abuseattorney Bernard J. Hamill, “ensuring safe care is continued familyinvolvement. There is really no substitute for this.”

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

Helping friends is fun, whether they like it tor not.