“This chili is bangin’!” – MS and Speech

Every day is MS Awareness day in our story.

Enjoying some of my home made chili at home earlier this month,Patti blurts out “this chili is bangin’!” Laughing, I couldn’t help but wonderif ‘gangsta wannabees’ had taken over Patti’s care facility. Certainly none of ushad ever introduced the slang into conventional dinner conversation. Is thisthe new jargon of care facility life in 2012?

More than likely just MS Speech. Not one to write technicalentries our story of MS Speech for MS Awareness Week/Month is best told through trial and error memories we lived and laughed through to get here.

Speech & Voice Multiple Sclerosis October, 2009

"a church moment" March, 2006

... Patti cannot always control speaking volume andthe more she tries the more opposite it can become

“Horton Hears A *&#!” March, 2008

... “The frontal lobes are very important inregulating our behaviour. … People … fail to inhibit their innermost thoughtsand do not modify their comments according to the situation.” Cerebral FunctionUnit, Carer’s Support Group, Salford, UK

"Hello!You little brat!" December, 2008

... In a recent study of MS patients, … 62% reportedspeech and voice impairments

cursing and swearing and Multiple Sclerosis, oh my! July, 2009

... Cursing and swearing is different thanlanguage, activating the emotional centers in the right side of the brain,rather than the cerebral communication centers on the left.

Thou Shall Inspect What Thy Expect October, 2004

... From the National Multiple Sclerosis Society“Speech disorders are fairly common in MS. Lesions—damaged areas—in differentparts of the brain can cause several types of changes in normal speechpatterns. …Long Pauses … Words are Slurred … Swallowing Problems …”

Regardlessof whether MS Speech is a disorder, an impairment, a symptom or whatever -after 22 years of spouse caregiving if Patti calls my chili bangin’, that’s acompliment in my book!

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’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

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