where is the cure for Multiple Sclerosis

March is designated Multiple Sclerosis awareness Month. This March is our 28^th year of living with Multiple Sclerosis as a family since Patti’s diagnosis in 1985 of ‘probable MS’ ... where is the cure?

She cried so uncontrollably upon hearing her diagnosis that her neurologist’s office called me to pick her up rather than have her try to drive.

This PSA by NMSS first run in 1994 is IMHO the best ad I have ever seen for MS. It portrays a year living with MS. Now multiply it by 28 and you get the idea.

Since 1989 ‘spousal caregiver’ has supplemented the label husband. Last year a diagnosis of lung cancer was added to my labels.

Since this could be my final MS Awareness month, I’m going to speak my mind.

Multiple Sclerosis comes down to ‘activities of daily living’ when you lose your abilities for dressing, eating, ambulating, toileting, and hygiene you become dependent. For the last several years Patti lives in a long term care facility. She requires a team of assistance to complete any and all the activities of daily living. MS cognitive symptoms including dementia have made piecemeal of her brain, preventing her from even remembering I have lung cancer.

“Cruel and unusual” punishment is prohibited by the Bill of Rights to the US Constitution. Patti did nothing to warrant life imprisonment in her own malfunctioning and declining body. 

What about the collateral damage of MS to family from my shortened life expectancy to our daughter.

Since Big Pharma found a new and profitable market in maintenance medications for some people with milder Multiple Sclerosis there has been a tendency to sugar coat MS. That coupled with the disappearance of those with severe MS from the dialogue whether in social media or mainstream media, I worry that focusing on the cure is taking a back seat to the more profitable maintenance medications. 

Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

care facility multiple sclerosis caregiving

“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 wonder if ‘gangsta wannabees’ had taken over Patti’s care facility. Certainly none of us had ever introduced the slang into conventional dinner conversation. Is this the new jargon of care facility life in 2012?

More than likely just MS Speech. Not one to write technical entries 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 and the more she tries the more opposite it can become

“Horton Hears A *&#!” March, 2008

... “The frontal lobes are very important in regulating our behaviour. … People … fail to inhibit their innermost thoughts and do not modify their comments according to the situation.” Cerebral Function Unit, Carer’s Support Group, Salford, UK

"Hello!You little brat!" December, 2008

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

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

... Cursing and swearing is different than language, 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 different parts of the brain can cause several types of changes in normal speech patterns. …Long Pauses … Words are Slurred … Swallowing Problems …”

Regardless of 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 a compliment 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’s world, after two decades of Multiple Sclerosis sometimes eating for taste trumps eating for health.

While dysphagia is always a clear and present danger at least these comfort 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, practically an animated musical. Of course there was a 'message' about protecting the environment but as with all Seuss stories the telling of the story is just so darn entertaining and fun.

While we are blessed to own a wheelchair accessible van that empowers Patti’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 caregivers and families that depend on subsidized public accessible transportation or contracted providers face an unknown tomorrow. Everything from access to medical care to independence to access to family and friends could shrink.

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

Yet this is democracy and these are ‘proposed cuts’ it is time for all 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 whammy of cuts to social services and zero public transportation funding that could most affect the lives of those needing wheelchairs. “Able-bodied people had unfettered access to stairs and elevators that lead to Gov. Tom Corbett’s office 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 what is in front of us.

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

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

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

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

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

Marianne Gingrich, former wife of Newt Gingrich, reports Newt asked for divorce just months after she had been diagnosed with Multiple Sclerosis.

And on the other side …

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

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

27 years ago I, like most, had never seen or even heard of MS. My awareness began when I saw Patti’s tears and heard her sobbing, “the call”. “…The caller explained Patti was crying uncontrollably and could I come get her. … Upon arriving I found Patti still crying alone in an examination room. Her neurologist appeared and explained he had told her that “she probably has Multiple Sclerosis…”

Like comets that travel through once in a lifetime perhaps never again will Multiple Sclerosis be a part of the lives of so many major players on our public stage.

In the USA, the Month of March is designated for Multiple Sclerosis Education 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 heart attack on Feb 29, The Hollywood Reporter reports Jones' family is asking for donations to be 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

World MS Day 2011: Work and MS

World MS Day - the last Wednesday of May each year - is an international day to raise awareness about people living with MS across the world.

The 2011 theme is ‘Work and MS’. How changes to a workplace can enable people with chronic fluctuating diseases like MS to stay in work. You can learn more at www.worldmsday.org.

People with disabilities and/or chronic diseases can be marginalized by society when their rights to access work are not recognized by employers or safeguarded by laws in their countries.

This is not about reinventing the wheel - it’s about removing obstacles to the wheel.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

MS awareness a crossword puzzle

Even awareness is puzzling when it comes to Multiple Sclerosis. March is “MS Awareness” month or week in the US. May is “MS Awareness” month in Canada. Internationally, World MS Day will be May 25^th. 

So why not a Sunday crossword puzzle dedicated to MS awareness?

A blog reader has the choice to click on the picture, print it out, and work the puzzle.

Patti and millions throughout the world have no choice as these life altering symptoms and more cruelly fill in the building blocks of their lives.  

Need the answer key to the crossword? I edited it into the close of a Feb. 2009 entry, EVERY DAY is MS Awareness Month / Week If only answers to living with Multiple Sclerosis were so easy. 

Caregivingly Yours, Patrick Leer 
web site: caregivinglyyours.com 
videos: www.youtube.com/daddyleer