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.

MS Walk 2011 Gettysburg

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 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer 

MS Walk and Roll - Gettysburg

There is fundraising and then there is FUNraising. For a couple hours, one Sunday a year it’s all about people living with Multiple Sclerosis.

Face-to-Face with other people living with MS and those who give a damn is even cooler than Facebook.

90 seconds of our last 5 years of National MS Society – Central Pennsylvania Chapter MS Walks kind of gives you the picture.

Of course, symptoms “R” MS and this year we are heading to the more wheelchair friendly Gettysburg MS Walk and Roll . 

It’s getting harder for Patti to sit upright in her wheelchair for any length of time and frankly less than fun to be jostled over cracked sidewalks, up and down curb cuts from hell, and frequently steep terrain.

MS symptoms of fatigue and incontinence also mean you have to maximize time. A mile loop over a paved walking path vs 4 miles, that’s as MS friendly as it gets.

Entertainment, snacks, re-enactors, and “Abe” well … that’s the FUNraising part of it all.

You are more than welcome to support and/or join our team, Patti’s Pride.   


Of course, Gettysburg is and will always be more than anyone person who ever walks or rolls there. To commemorate the 150th anniversary of the American Civil War, later in April there will be a reenactment of Union and Confederate troops advancing into town, skirmishes, living history encampments, and an hour long cannonade of 150 cannon shots to salute the brave men and women who fought in the American Civil War. Invasion of Pennsylvania – Gettysburg

However, I realize this blog is read far and wide so for your convenience here are links to find similar events near you MS Walk (USA), MS Walk (Canada), MS Wheel and Walk (UK), MS Walk & Fun Run (Australia), God Bless the Irish! They have a “muddy marvelous” MS Muck n Splash, India, Iran and more … Raising MS awareness with art, food and sport 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer 

MS Walk Hershey, PA

Where better than the ‘sweetest place on earth’ to spend a Spring afternoon?

Joined by “Patti’s Pride” we pushed, rolled, and even walked as part of NMSS Central Pennsylvania Chapter MS Walk 2010 at Hershey, PA.

Pictured from left to right: (back row) Sharon Lanzino, Diana Martlew, Gloria Decker, Dave Decker, Harold Decker, Joan Hamilton, Janis Dean (front row) Patti Leer, Patrick Leer.

Hershey was a new MS Walk location for us as we are always in search of a ‘more accessible’ route. Kudos to the organizers and volunteers!

Most important the day is about having a good time with family, friends, and strangers all coming together for one brief moment in the year over living with Multiple Sclerosis. Hershey MS Walk besides being the ‘sweetest place on earth’ was also a fun and interesting route.

Patti enjoys a Hershey bar and a cigarette with the backdrop of the Hershey Mansion.

Rolling back through ZooAmerica as part of the route was a visual and mental treat.

We gained a most useful new product, “reusable cool neckwear”, modeled by Patti below. Only a week ago in my entry entitled fondue with Uhthoff's Phenomenon, MS heat intolerance dramatically affected our evening. This is a KEEPER!

One of the least talked about relationships in living with MS is parents. I cannot even imagine what it would be like to learn that your adult child that you successfully raised to be a healthy, happy, independent adult has been diagnosed with MS much less watch the decades of progressive decline of abilities back to dependence.

Patti and her parents share a laugh and proud moment over this poster. Zoom in and you will see Patti Leer and her Mom, Gloria Decker both listed among the honor roll. ... Special thanks Liz Follin, Martha Hoover, Lyndee Dean, Barry Lewis, and Bob Decker; you ARE part of this unique and poignant picture.   

Above all, thank God for Patti’s brother Dave, Doris, and our daughter Megan for sharing the wheelchair pushing.

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

wheelchair van: the throaty growl of freedom

Even Dodge in its latest TV commercial acknowledges "There are guys who will smirk at you for buying a Dodge Grand Caravan ..." 

Throw in a lowered floor for wheelchair accessibility and a disability parking placard hanging from the rear view mirror and you have zero intimidation factor when pulling up to a stop light and glancing over at bikers on Harleys or youngens in roadsters. 

That is until I rev our engine. For whatever reason the undercarriage modifications to accommodate the lowered floor in our Dodge Grand Caravan Sport minivan produce a throaty growl from the exhaust. With a recently replaced muffler and tail pipe that growl now roars, yeah baby!! 

It is bemusing to watch the heads on Harleys and youngens in thumping cars snap their heads to see what on earth is thundering next to them. "There are guys who will gape slack-jawed as you thunder up in your wheelchair accessible Dodge Grand Caravan ..." :) 

More than a vehicle this is freedom on wheels for Patti. With Multiple Sclerosis progression Patti is unable to transfer herself to and from a wheelchair and a vehicle. Patti's level of disability makes assisted transferring to and from vehicles a risk to both her and anyone assisting her. Without our wheelchair accessible van Patti's life would be more isolated and different than frankly can be imagined.

All the more ... shouldn't freedom have a throaty growl?

Like so many aspects of living with MS, it took team work, NMSS Central Pennsylvania Chapter pointed us in the direction of Pennsylvania Assistive Technology Foundation (PATF) which brokered through Sovereign Bank a low interest 6 yr loan. MS Society Central Pennsylvania Chapter also was able to help us with an assistance grant that basically covered 15% of that first year's monthly payments. We have been fortunate enough to receive additional assistance grants to help make Patti's freedom of mobility a bit more affordable in 2 of the past 3 years. ... and you wondered what charitable fundraising does?

This Sunday our wheelchair van will be growling its way over to Hershey, PA for the MS Walk. Thanks to the generosity of on-line donations and old fashioned checks to be turned in, Patti's Pride team has surpassed  its goal and will be be taking a victory roll /lap. And for a few brief hours on one day of the year living with MS will not be the exception.

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 
videos: http://www.youtube.com/daddyleer

MS Walk: why we PUSH, ROLL and even WALK

We are not fundraising gurus, just one family living with Multiple Sclerosis for a little over 20 years.

MS Walk or Walk MS, has become the flagship event both for fundraising and Multiple Sclerosis awareness in most communities.

On a best of possible MS Walk days we find ourselves enjoying several hours among others like us and unlike us, such is Multiple Sclerosis.

In the early years, hope burned like a wildfire consuming everything. Fighting MS was all that mattered.

As the years rolled by, that fire of hope continues to burn just more focused. “Living with MS” and quality of life now dominate.

Likewise “why fundraising” shifts with each person living with MS. For many it is about research for a cure. For many it is about help with getting through the day.

There are both reasons to help and excuses in the best of times and the worst of times. While there are valid questions about charitable fundraising, in general, waterboarding munchkin sized peddlers of Girl Scout cookies is hardly necessary. … and yes there a many causes competing for help.

What I do know is that for a few hours on one day a year we can participate in something where ‘living with Multiple Sclerosis’ is not the exception. Plus Patti’s freedom of mobility, our wheelchair accessible van, has benefited from MS fundraising.

We invite you to join us on April 18th at Hershey, PA. Clicking the link below opens “Patti’s Pride” team page, where you can visit her team, join and/or donate.

http://main.nationalmssociety.org/goto/pattileer 

If not here, you can still form or join a team, be an individual walker, find someone to sponsor, or simply volunteer to help with a Walk in your own community.

In USA locate a chapter 
In Canada please consult Division home pages
                SVP voir les pages web des Divisions 

MS Walk: why we PUSH, ROLL and even WALK (30 sec)



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

2009 MS Walk, Camp Hill, PA

Sunday morning people flock together for all kind of reasons from religion to sports to flea markets. It is always fun and inspiring to be part of a gathering of people, family, and friends brought together around living with Multiple Sclerosis.

Partly cloudy and 60°F (15.6 °C) the weather was a blessing for the 20th Anniversary of NMSS Central Pennsylvania Chapter’s MS Walk.

Interestingly, I observed more wheelchairs being pushed and electric mobility than ever before at the 2009 MS Walk at Camp Hill, PA.

“Patti’s Pride” team more than doubled its fundraising goal thanks to so many wonderful people. THANK YOU all!!

Take a minute and visit.


MS WALK 2009, CAMP HILL, PA

Fundraising is only part of what any MS Walk is about for those living with Multiple Sclerosis. For one Sunday morning a year, YOU and AWARENESS of MS are what people come together over. That sense of community even the briefest taste can be soooo refreshingly exhausting!

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

a caregiving Easter

Easter Sunday at a care facility is an anomaly. Parking lot full, sounds of children playing, families together. Wouldn’t it be nice if every Sunday was like this?

With progression of Patti’s Multiple Sclerosis related optic neuritis and visual impairment (legally blind) shopping for gifts has evolved from challenging to strangely fun. I push her around a store until two requirements are met. First, she can actually “see” it; second, it fits on her lap.

No Easter baskets, flowers, frankincense, or myrr from us!

After an Easter Sunday feast with Patti’s family, it was off to City Island to get in a couple miles of practice laps for the MS Walk next Sunday.

Pushing a wheelchair or better yet 160 lbs (145 Patti +15 chair) over 3-4 miles of neighborhood sidewalks and streets is not exactly something I pull out of the hat once each year. We TRAIN!!

Unless you have actually spent time in a wheelchair you may be surprised that even being pushed over that distance up and down curb cuts and bumping over uneven sidewalks takes training.

By 4:30 in the afternoon Patti wanted nothing more in the world than to “go to bed”.


Pennsylvania, Camp Hill - walk MS: Central PA 2009


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

to walk or not to walk

Fundraising has become as much a part of Spring as flowers and showers.

“showy fundraiser walks, … upbeat copy about how you’ll be ‘making a difference’ or ‘bringing hope’ or ‘changing lives’. It all sounds great, I know, but my advice is “don’t walk”.”
Duncan Cross “Don’t Walk”

"I, for one, used to donate to MS charities. … I like to support charities where I can actually see my support making a difference --- today! Because suffering - today -- is what needs assistance, in my opinion."
Disabled Not Dead “Numbers Game”

Excellent questions and concerns about organizational fundraising are raised in the above entries. In our story, we NEVER participated in a MS Walk for the first 20 years of Patti’s diagnosis. Why? In the beginning, NMSS was simply NOT friendly to those with progressive MS.

Surprisingly and suddenly 4 years ago Patti remarked that she wanted to attend a MS Walk and we have been participating since (I push, she rolls).

By participating we discovered that NMSS had become friendlier to ‘living with MS’ not just ‘a race for the cure’. Today a NMSS assistance grant helps us to afford our wheelchair accessible van which in turn dramatically impacts the freedom of Patti’s daily life.

Progressive MS does get the short end of the stick, I suspect, because it is not ‘seen’.

It is a challenge to get Patti out and about. So when a grocery chain raises money for MS by asking at checkout if you would like to donate a dollar to MS, it can get interesting asking Patti and I that question depending on who answers first. (If I were to quote Patti's answers this would have to be an 'adult only' entry.) Clerks always LEARN more than a dollar’s worth about MS.

Fundraising walks and awareness rallies also create a brief sense of community. Let’s face it, any chronic illness or disease is isolating. While not everyone will agree with the course of any organization, for a couple hours it is refreshing to be around others ‘like’ yourself. Certainly not identical, maybe not even similar, but there are enough shared experiences, fears, hopes, and laughs to go around.

Patti's Pride: Central PA 2009 Walk MS Camp Hill, PA - April 19

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

MS Walk 2009: I PUSH because ...

Help OUR team in the fight against MS!

Walk MS 2009: I PUSH Because ...

We've formed a team for walk MS because ... How many people go to bed expecting to awake to a different life in the morning?

Thanksgiving morning 1989, Multiple Sclerosis transformed our family including myself, our then 18 month old daughter, and, most of all, my wife Patti who awoke unable to walk, see, and barely able to talk.

Join our team on Sunday, April 19th as a walker or a volunteer! Make a donation online! Send in a check! There are so many ways to make a difference in the fight against MS, and it all begins right here.

If you ever wonder what Multiple Sclerosis fundraising such as MS Walk is all about … Patti’s freedom is a good example!

Wheelchair confined and unable to transfer Patti’s life would be dramatically different without our van. MS fundraising enables financial assistance grants from NMSS Central Pennsylvania Chapter for families living with Multiple Sclerosis. It helps make freedom a bit more affordable.

NMSS Central Pennsylvania Chapter web links VeriSign secured, powered by Convio.

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer

musings: Patrick Ponders ...