Friday, April 29, 2011

come dance with Me

Flipping over April on the wall calendar closes ‘Autism Awareness’ month and May welcomes the ‘Prom Season’, but what if … they are the same thing?

Awareness campaigns can be overwhelming and sometimes lost in it all is that people of all abilities can and do celebrate and enjoy who they are.

Join me for a 50 second peek into a special education prom co-hosted by nine local high schools while J & T stayed with us here and autism was a whole lot more than an awareness month.
Shelves could be filled with books about challenges and likewise the tireless effort of parents, teachers, schools, benevolent organizations, volunteers and local businesses to create opportunity regardless of ability.

Yet maybe the Persian poet, Hāfez, writing way back in the 14th Century said it simplest and best.

The God Who Only Knows Four Words

Has known God,
Not the God of names,
Not the God of don'ts,
Not the God who ever does anything weird,

But the God who only knows four words
And keeps repeating them, saying:
"Come dance with Me."


Caregivingly Yours, Patrick Leer 
web site:  

Monday, April 25, 2011

so they f*#cking say - Multiple Sclerosis speech

Arriving Easter morning to pick Patti up for an Easter Brunch outing, her care facility was overflowing with families and volunteers.

“He is risen!” rolled off tongues more frequently than hello or good morning.

Well until Multiple Sclerosis Speech turned the whole greeting and response thing upside down.

Patrick: “Hey! Patti.”
Patti: “Yeah!”
Patrick: “He is risen!”
Patti: “So they f*#cking say!” (and loud enough for ‘they’ and anyone and everyone to hear)

For the briefest of fractions of a second you could have heard a pin drop …

Then as Patti exploded in laughter the most joyous sound began as a contagious chorus of guffawing to giggling from residents and visitors echoed and rose up through the Easter morning.

I overheard more than a couple comments that they wanted to go where she goes to church. J Hallelujah!

Related entries Multiple Sclerosis Speech:
Caregivingly Yours, Patrick Leer 
web site:  

Sunday, April 24, 2011

let them eat memories

Memories paradoxically both bond and separate you the longer you are a caregiver, at least when Multiple Sclerosis progression impacts cognitive abilities.

With our daughter’s birthday looming, Patti had not remembered, could not remember the day, nor could guess her age after multiple attempts. How? Why? -  What difference does it make?  It seemed better to just enjoy a fun time in the now creating an entertaining outing to include Patti in preparing for our daughter’s birthday.

"What you see and hear depends a good deal on where you are standing; it also depends on what sort of person you are." C.S. Lewis

Earlier asking our daughter, she had requested sushi quickly adding how about carry out and eat at home as it’s easier for Mom. True, and as I often stop to remind myself it is ‘their’ relationship and shared memories, not my perception of it. Megan only had 18 months of a ‘traditional mother’ daughter bond before severe disabling MS changed our family dynamics.

Rolling on in the now, we were blessed by nothing but the right sort of persons. Yes both the bakery and sushi bar were wheelchair accessible but wheelchair friendly is about the people behind the counter.  In both places, without asking or hinting, whether baker or sushi chef, they saw with more than eyes what was going on and brought selections around from display cases holding them for Patti to see and empowering her enjoyment of involvement.

Memories fuel an entire industry - inspiring poets and songwriters, employing practitioners of the psychobabble arts, and both haunting and comforting us.  Yet when memory loss enters the equation are any of us prepared?

Only in perspective can moments get poignant, when eyes smile in the now “sure, they steal your heart away.”
Caregivingly Yours, Patrick Leer 
web site:  

Tuesday, April 19, 2011

heart with a touch of madness

Picking Patti up Monday for a movie outing I found myself smiling as staff tried to guess what we were going to see. Hop? Rio? Arthur? – ‘Scream 4’ was just not on their radar.

Smiles became laughter as Patti and I driving to the theatre got to talking about slasher flicks as a litmus test for caregivers. Look for someone who has seen all the Friday the 13th movies, all the Nightmare on Elm Street movies, all the Halloween movies, and all the Scream movies. Beware those sensitive "chick flick" types. J

Yes, with Multiple Sclerosis progression movie going adaptation has been necessary, through MS 'symptom D' glasses, and while I could go on my own – frankly its about continuing to share in spite of obstacles.  

Hey, who cannot appreciate a good scream?
And what goes with screams better than cheers? Without taking anything away from those who could and did run in the Boston Marathon …

… isn’t pushing a marathon at age 70 hardest of all?
“Over the past 33 years, Dick Hoyt has pushed, pulled and carried his disabled son, Rick, through 28 Boston Marathons. But as time bears down on them, how much longer can they keep it up?” The Wheels Of Life

Heart with a touch of madness - now that’s the litmus test for caregiving!
Caregivingly Yours, Patrick Leer 
web site:  

Saturday, April 16, 2011

nudist, CCSVI, thief, and hope – a week with MS

Some weeks news of living with Multiple Sclerosis is just stranger than others.

“He paid $4,000 and was looking forward to the trip of a lifetime - a ten-day nudist cruise around the Caribbean. …” Nudist with multiple sclerosis 'booted off naked cruise' 

(CCSVI) “American researchers have cast fresh doubts on the theory underpinning so-called 'liberation therapy' for multiple sclerosis sufferers.” Study shoots hole in 'liberation' theory for multiple sclerosis 

“accused of stealing more than $1,000 from a bank account set up for contributions to the Multiple Sclerosis Society…” Minnesota woman accused of faking multiple sclerosis, stealing money from charity ride 

“In the world of “promising” multiple sclerosis drugs, two more experimental drugs -- both in pill form, not injected -- are joining the race of new treatments to slow the disease. …” Two multiple sclerosis drugs may add to arsenal against disease – eventually  

And as a caregiver, well it was the week to add pushing a lawnmower back into the juggling act. J

Caregivingly Yours, Patrick Leer 
web site:  

Thursday, April 14, 2011

autism: transitioning to the unknown

Like most issues, Autism in the macro view is nearly incomprehensible. Living with autism as a family may even be unimaginable for most.

“In the next 15 years, an estimated 500,000 autistic children will graduate out of school systems in the U.S. and into the unknown. Meaningful programs for them are scarce, and funding even scarcer. …

“You’re devastated twice: first, with the diagnosis; then, years later, when you realize that after all the interventions, you still have a kid with autism and you have to plan his future.”

That planning process—which begins during a child’s teenage years—is called “transition,” but many parents can’t tell what exactly they’re transitioning to. Only about 3,500 programs are available nationwide for autistic adults, compared with 14,400 for autistic kids. Some are little more than day care, while -vocational programs may consist of participants working for a company in isolation, doing piecework like shredding paper. “It’s not what we want for our kids,” says Jeff Sell, a vice president of the Autism Society and the father of autistic twins. “The situation in many places is sad, disheartening, and disgusting.” Autism’s Lost Generation: Who Will Care For Dana? 

Here in Pennsylvania"The major problem plaguing Pennsylvania’s system is the care provided after high school. Many young adults have nowhere to go after graduation because group homes and other facilities have years-long waiting lists and the funding for waivers, which allow special needs adults to live independently or semi-independently, is not being increased.” State Rep. Tom Murt to host disabilities awareness walk and resource expo

We had no clue about anything related to autism until Jennifer and Tyler became part of our story. Single parenting a severely autistic child to the age of 18 should be a legacy until itself rather than the beginning of an even longer caregiving unknown.

Frustratingly public awareness campaigns are like leading that proverbial horse to water. Shared story by story, face by face through social media – maybe just maybe the future may have more hope.

Caregivingly Yours, Patrick Leer 
web site:  

Tuesday, April 12, 2011

multi-task flavored ice cream

Caregiving IS multi-tasking. Yet just when you thought you might have it all together some researchers at University of California San Francisco report that the ability to switch easily between tasks fades with age. … Older people worse at multitasking 

Or in other words, we can add ‘what was I doing?’ to the butterfly effect of caregiving

Fortunately it was not too taxing on multi-tasking skills yesterday to know that with 85°F (29.44°C) it was time for our first ice cream outing of the season. Hershey’s Special Dark Chocolate milk shake for Patti (with extra milk because if too thick Multiple Sclerosis dysphagia related problems short circuit successful use of a straw) and a coffee chocolate chip cone for me.

Not only a yummy outing but now, according to UCSF, I can justify a ‘Rocky’ pose just for remembering our order and finding the van in the parking lot. J

Caregivingly Yours, Patrick Leer 

Monday, April 11, 2011

wheelchair friendly Gettysburg MS Walk 2011

Wheelchair accessible is subjective. Wheelchair friendly – now, that is embraceable.

MS Walks (Walk MS) are the signature fundraising events for National Multiple Sclerosis Society in the US.

Unfortunately the word ‘walk’ and Multiple Sclerosis do not exactly associate. As a MS spouse caregiver of 21 years understanding marketing gurus is beyond my credentials. On the other hand appreciating the success of that fundraising is hard to deny. The millions and millions and millions of dollars raised benefits both research and those living with MS. Our wheelchair accessible van benefits from the financial assistance program National MS Society.

Like all bigger issues it eventually boils down to a moment in time, a few hours one Sunday a year when living with MS is not the exception but the reason people gather together.

The Gettysburg MS Walk was certifiably wheelchair friendly!  No curb cuts, no cracked and uneven sidewalks, no significant incline or decline to terrain. More than just an awareness of accessibility but an ‘understanding’ defined the event, a casual and social 1 mile lap through the park. If you wanted more exercise go take as many laps as you want. Common sense is such a treat.
Wheelchair friendly may even be an understatement. Wheelchair welcoming might be better. “Abe” (Jim Getty) could have been just a photo op, but no he took the time to chat with Patti as Abe Lincoln. Everything from parking to registration through waiting for the Walk to start to snacks and socializing afterwards was personally so friendly and welcoming.

At the core of it all is Patti’s Pride a team of family and friends that rallies around Patti. Year after year whether beating fundraising goals or showing up to push and walk – they rock!
Improving on a formula for success goes too often unheralded. The Gettysburg MS Walk coordinators, committee and volunteers, IMHO, simply created a ‘better’ MS Walk model - they may have re-invented the MS Walk.
Caregivingly Yours, Patrick Leer 

Tuesday, April 05, 2011

what's your EDSS score?

What’s your EDSS score? Could that ever become a Multiple Sclerosis version of ‘what’s your sign’ minus the 70’s disco and bell bottoms.

No one wants to be a number but we all are. From social security to pin numbers we ‘R’ numbers masquerading behind names.

With Multiple Sclerosis another number the EDSS (Kurtze Expanded Disability Status Scale) score becomes part of the collection. 

Yes, people argue about subjectivity of EDSS. However in the real world, Big Pharma has no problem using EDSS scores for promoting effectiveness of MS disease modifying drugs, EDSS scores are prominent in evaluating CCSVI results, and clinical trials world wide use EDSS scores as a common denominator. … In the blogosphere era wouldn’t an EDSS score at the top of a MS blog page help the search for shared experiences, information, and kindred situations?   

Even an EDSS calculator app is available for smart phones. How far are we from the Star Trek scenario, where you just wave your phone at someone with MS to read their EDSS score?

Multiple Sclerosis as a diagnosis is confusing; one person can run while another cannot walk. That confusion ripples out from those diagnosed with MS to family, extended family, and friends.

Can numbers clarify? God only knows! Yet they can identify the range from independence to dependence.
Graphs such as the above, provided by Biogen (manufacturer of Avonex and Tysabri) even over-simplify score levels with images. Hopefully anyone can ‘see’ and make the interpretative leap as to what each level may mean for the person diagnosed, how you can support and best be involved.

… and for ‘inquiring minds’ since I did open the door in the first paragraph – Patti in addition to an EDSS >8 is a Virgo and I’m a Sagittarius. J   

Caregivingly Yours, Patrick Leer 

Saturday, April 02, 2011

autism awareness: one story at a time

Autism awareness is probably best learned one story at a time.
I found myself reflecting on how living with autism intertwined with our story for 16 months. Smiling at the pictured autistic fashion statement of wearing a head band around one’s chin - it was a unique shared time.

Reading a story yesterday on the top 10 best places to live for autism and bringing baseball into a metaphor, Jennifer and Tyler essentially went from Red Sox to Phillies back to Red Sox, all in all not to shabby.

Teen autism becomes adult autism just as quick as any teen becomes an adult. Location and immediate future of adult autism services and opportunities was the eventual trump card … soon it will be again

Autism awareness can be confusing. The diagnosis is expansive. People not living with autism may have to turn to their imagination to even begin to get it.

Imagine a child who was, is, and always will be a child –dependent on others. Imagine a world of sounds and noises but no communication. Imagine not a dream within a dream, but living in your world within the world.

Now try to imagine the unimaginable, the parents. In their parallel universe, when their kid hangs up a coat, looks someone in the eye, responds to their name, or earns their first $4 paycheck for half a day of stuffing envelopes the Rocky theme may play even louder as the soundtrack to their pride and joy at the accomplishments of their kid. Though living from diagnosis through 24/7 rest of your life caregiving, they are able to endlessly redefine love.

What can everyone do for Autism Awareness Month? Be aware – learn. If family or friends are living with autism then be proud of them – be damn proud.

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

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