Wheels Of Freedom And Independence

Fielding a question over on MultipleSclerosis.net, “How do you make the move to a mobility aid like a scooter or wheelchair? I still haven’t gotten used to the stares when I use my cane, you know, I look so good….”, I found myself reminiscing over that transition era when personal vehicles whether her Rascal Scooter or wheelchairs were about Patti’s independence and freedom in a dependent world. 

Wheels Of Freedom And Independence

Posted by Patrick Leer—May 7th, 2013

Living with MS or any chronic illness or disease “as a family” takes wanting to share and adaptability. Amplified by metastasis of my lung cancer and falling risk - it seemed all the more important to hug a memory.

Thanks again to MultipleSclerosis.net for inviting me to share longer versions of our story and sure wishing something like this existed in the late 1980’s.

Patrick Leer

Health Activist:

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

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

caregivers create accessible snow

With all due respect to the residents of the New England states, between Feb 5 – Feb 10th 2010, Snowmageddon dumped 35” (88.9 cm) of snow on South Central Pennsylvania.

Yeah, it disrupted lives for a week, but the beauty of a storm like this was to be enjoyed.

Accessible snow = caregiver + shovel!

Living on a corner property snow plows only added to the depth for  'snow spelunking' opportunities before breaking through on Valentine’s Day! 

No snow blowers were used in the making of this collage. 

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

first snow push and roll

Maybe it’s the combination of reading other Multiple Sclerosis related blogs and the dawn of the 23^rd year of our own story of living with MS but my heart goes out.

Maybe Guns N’ Roses was right, “... Nothin' lasts forever … and it's hard to hold a candle in the cold November rain …”

Others all seem like such youngens either chronologically or in terms of MS progression. I pray they all can stay forever young, stay forever mild. It sure doesn’t get any easier.

Whatever, as long as I can still push a wheelchair and the first snow falls it was time to get Patti out for a push and roll through the park adjacent to her care facility.

MS dementia symptoms are such cunning thieves. Patti enjoys the ‘now’ of the push and roll but she quickly forgets as she remembers her longer ago pre-MS times skiing.

Then it was home for dinner and back to my ongoing project to extend Patti’s self-feeding for as long as possible. Thanksgiving and Thanksgiving left overs are not exactly dysphagia friendly food and require me or someone to feed Patti along with verbal cues.

On the other with the flick of a switch our gas fireplace leaps to life as I hand Patti a bowl she can self-feed with cut up MorningStar Farms vegetarian buffalo wings, cut up mango spears, and grapes to enjoy in front of a fire after a push and roll through the season’s first snow. 

One way or another we all live 'in the now', some of us just remember it. 

Patrick Leer

BLOGS:

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

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

multiple sclerosis caregiving care giving

winter wheelchair tips for caregivers 2011

In a wheelchair Patti does not generate the same body heat as a walking person. Cognitive impairment only adds to risk when outdoors in any weather.

Speculating on how fast it takes for hypothermia to set in is a fools’ question. … Prepare!

While winter embraces all, it does demand caregiver / carer respect. Our story is about Multiple Sclerosis however winter weather does not discriminate over diagnosis.

Lower body for a non-ambulatory person is most vulnerable. Last winter was a benchmark when we received a gift of a buggy bag® wheelchair lap blanket. All the time and stuff involved such as layers of socks, leg warmers, boots, and blankets disappeared. It’s almost like the BC / AD line in our history of winter living with MS. Not only did it quickly become a winter mainstay but its all-weather features have made it all year rain gear.

It’s easy to say “wear several layers of loose-fitting clothing”. However when someone is unable to dress themselves this can get beyond interesting. A sense of humor is most helpful. 

For outerwear we depend upon a hooded wool zippered cape. Capes are easier for getting on and off when assisting someone in a wheelchair and a zippered cape simply increases options. Hoods are easy to flip up or down, cover everything except the face and are always attached. While wool is ‘old school’ it still has the unique ability to provide warmth even when it is wet.

While a hat and scarf are often recommended I have concerns about mixing scarves and wheelchairs, though I have learned of the ‘infinity scarf’ for those wanting style without the ends that could catch in wheels. Hats work OK but are easily misplaced and can create some serious ‘electric hair’ styles.

Mittens ‘rock’! Rather than struggle to fit her fingers into gloves Patti just slides her hands into warmth.

Most importantly remember your carer / caregiver self especially your foot wear on snow or ice-covered sidewalks, ramps, driveways, etc. Fashion is arbitrary, falling is unacceptable.

Being prepared separates ‘disability forced hibernation’ from enjoying winter to its fullest!

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

adapting Halloween, what's this? snow!

Sometimes adapting to living with Multiple Sclerosis life can be…

- captured in a movie minute 

When Multiple Sclerosis symptoms impair viewing parades we experimented successfully with visiting 5 local Halloween parades while they assembled 

- acknowledged 

... attending our local MS Society Chapter Annual Meeting and Recognition Celebration, Patti’s primary concern throughout the event was “I just want a ciggie” while I was giving thought to borrowing a page from the Legend of Sleepy Hollow and throwing a jack-o-lantern at the speaker if she requested one more time for honorees to “please stand”. It’s all about perspective.

- or simply enjoyed
... as 6” (15.24 cm) of snow fell on Saturday of Halloween weekend followed by a 54˚F (12.2 ˚C) Sunday for playing while it lasted.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

winter caregiving

Caregiving in winter is as much about the caregiver / carer as tools. The only guarantee is that with each winter the carer / caregiver gets older, and with winter weather the unexpected is to be expected.

                

Contrasts between home care and care facility care are unquestionably amplified in winter. In a care facility, options for acute medical care, prescriptions and care needs are already in place or come to Patti. Homecare faces transportation and accessibility challenges through every minute of any and every winter storm. How often is a snow plow going to appear and get you to medical care?

When able bodied people are struggling to get around, the mobility challenged can ‘fogetaboutit’. Streets may get plowed but wheelchair curb cuts won’t be seen until Spring thaw.

Just last Winter, my car was totaled returning from work in pre-blizzard hours and I was stranded for two nights away from home. Fortunately Patti was safe and warm in her care facility. Home alone and non-ambulatory from Multiple Sclerosis, confused and unable to use a phone God only knows how that could have played out. My best Plan B from the home care era never actually anticipated anything happening to me.    

Winter caregiving is not only about about worse case scenarios, sometimes it’s about getting out to enjoy winter. In our earliest days of living with Multiple Sclerosis as a family, I shoveled cubic football fields to empower Patti as she pulled sleds through the streets on her scooter.

MS progression has affected Patti’s physical and cognitive abilities in the eighteen winters since scooter sleigh rides but not the spirit that answers to the north wind. Just last night storm running a forecast of freezing rain and ice I picked up Patti from her care facility for an outing of hot chocolate and ciggies. Tucking one happy camper into bed, I drove home climbed out of our van only to find myself stepping onto a sheet of ice and reflexively pulling off a damn good figure skating lunge to the bottom of our driveway.

Respect winter, yes, but more importantly embrace it.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer 

fun times off the sidewalk

Long term care certainly needs a toolbox of resources such as in the upper right hand corner of this blog. Yet in reality, eventually you both are going to find yourselves where the sidewalk ends and accepting that long term care becomes more about connecting the dots between moments in time.

When playing in the snow becomes more wheelchair friendly through a gift of a Buggy Bag wheelchair lap blanket from one friend then that snowballs into a unexpected visit when another friend who happens to be driving by the park pulls over. Children of the North Wind seem to find each other.

Watching Patti laugh so hard that tears run down her face and she can barely catch her breath transcends a movie outing. To be able to quip in my best Robert Di Niro impression, “Are you ready to be the god focker?” for days afterwards and watch Patti dissolve into laughter, I could hug the writers of “Little Fockers” and of course Patti's brother for the gift of movie passes.

Sure I could discover a wheelchair smoker’s apron but when a friend sends a gift of packets and packets and packets of exotic flavored hot chocolate,  well … there is simply no place that can compete with home right now for Patti’s favorite wish for ‘a ciggie and a hot chocolate’.

Yes, and even after all this time sometimes I still stumble into awkward moments. Picking Patti up from her care facility for an outing she was still wearing her knee orthoses for MS knee contractures and fuzzy socks. Removing the orthoses while talking out loud to myself I remarked “we need to get some shoes on, in case” and paused. Realizing both how dumb my ‘in case’ was and how long the pause was extending I could only sheepishly smile up at Patti. We both laughed as Patti completed my sentence, “in case I want to kick somebody” and agreed fuzzy socks were just fine.

Moments in time are the why. And why is the keystone of caregiving.

It is not impossible to dream that where the sidewalk ends you will find a little help from your friends.

Caregivingly Yours, Patrick Leer 

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

buggy bag wheelchair lap blanket

It all started with a blog entry - winter caregiving tips: wheelchair outings, then a comment:

This has been an issue that I have been working towards helping with for the past 3 years. My newest product, I think, and many agree, fits this bill.

I want Patti to have one. I'll email you right now.

Leslie

A present arrived yesterday and well take 90 seconds and stop in and visit …

Photographed outside moments later the reflective strip steals the show.

This buggy bag® wheelchair lap blanket revolutionizes enjoying winter.

As a caregiver / carer, putting on and taking off winter outerwear for a person in a wheelchair is time consuming and never really weather proof from all cold wet precipitation.  

The buggy bag wheelchair lap blanket takes about a minute and a half to put on and half of that to unzip and be out of.

With a water-proof and wind-proof outside and microfleece lining Patti is warm and cozy and while all bundled up the buggy bag is in no way binding.

You just gotta love people like Leslie Cairns who dream of making a ‘season of the year’ accessible and enjoyable for everyone.

BUGGY BAG® MOBILITY PRODUCTS

Caregivingly Yours, Patrick Leer 

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

snow falling and a bag of candy

Swirling light snow made the drive feel like riding through a snow globe. Ending up at a candy shop, well can it get much better than that?

More than a candy shop, think ‘blast from the past’. Georgie Lou's Retro Candy and Gifts, Carlisle, PA. 

Even though I could not talk Patti into bicycle streamers or a bicycle horn for her wheelchair, we laughed and laughed our way through aisles that may as well have been memory lanes of candy, metal lunchboxes and pop culture before it was ever pop culture, just something called childhood.

Building access was totally wheelchair accessible as was 99% of the store. The end of one aisle was too tight for Patti’s chair.

Afterwards riding in our wheelchair accessible van less than a mile away I asked Patti if she remembered where we just were. “I can’t remember, Lowe’s I think” she answered. (Lowe’s is a city-block sized home improvement and appliance store.) J

When cognitive and memory challenges become part of life you loose the ‘bounce’ you would traditionally get from doing something together. As a carer / caregiver you learn to live in the now.

When it comes to good times, well you are kind of left holding the memory bag for both of you. Sometimes it’s like a bag of candy, what Multiple Sclerosis may prevent you both remembering, you can always still enjoy sharing.

Caregivingly Yours, Patrick Leer 

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

winter caregiving tips: wheelchair outings

While winter embraces all, it does demand caregiver / carer respect. Our story is about Multiple Sclerosis however winter weather does not discriminate over diagnosis.

In a wheelchair Patti does not generate the same body heat as a walking person. Cognitive impairment only adds to risk when outdoors in any weather.

Speculating on how fast it takes for hypothermia to set in is a fools’ question. … Prepare!

It’s easy to say “wear several layers of loose-fitting clothing”. However when someone is unable to dress themselves this can get beyond interesting. I find a sense of humor most helpful.  

While a hat and scarf are often recommended I have concerns about mixing scarves and wheelchcairs, seems an accident waiting to happen. Hats work OK but are easily misplaced and can create some serious electric hair styles.

For outerwear we usually rely upon a hooded wool zippered cape. Capes are easier for getting on and off when assisting someone in a wheelchair and a zippered cape simply increases options. Hoods are easy to flip up or down, cover everything except the face and are always attached. While wool is ‘old school’ it still has the unique ability to provide warmth even when it is wet.

Mittens ‘rock’! Rather than struggle to fit her fingers into gloves Patti just slides her hands into warmth.

Do not forget lower body. Wrapping a blanket around gives that stadium seating look. However sliding leg warmers over pants legs are just as easy and makes a fashion statement. Both help maintain body heat and reduce any wind chill.

Thick socks with oversized shoes or boots make assisting with dressing infinitely easier. Patti’s not going to be walking. Proper shoe size is not as important as warm feet!

Remember your carer / caregiver self especially your footing on snow or ice-covered sidewalks, steps, driveways, etc. Falling is unacceptable.

Most winter outings will never need all of the above. Being prepared separates hiding out or enjoying winter to its fullest! 

Caregivingly Yours, Patrick Leer 

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

Snow Removal for People with Disabilities

Curb cuts are inadvertent victims of street plowing. Accessible parking spaces do seem to be too frequently used for snow piles. Ramps and inclines can get treacherous.

New Jersey pioneered a “Snow Removal Law” in 1999 to enforce removal of “snow, ice, or other obstacles from accessible parking spaces, curb cuts, and other improvements designed to promote accessibility”.

As a 20 year veteran of Multiple Sclerosis caregiving and wheelchair pushing, I do not believe plow operators, businesses, and homeowners are really criminal minds. I find most people simply overwhelmed by snow storms in general and unaware, bordering on oblivious, of the ripples that deny access to others.

As much as anyone I was thrilled to see snow plows keeping our neighborhood streets open. However where are they going to put it? Here Pennsylvania “may inconvenience the property owner by plowing snow onto the sidewalk rather than allowing snow accumulation to become a hazard on the highway.”

Inconvenience? It was difficult to tell if I was shoveling plowed snow off my sidewalk or spelunking.

While the pictures below may appear to signal my success restoring our sidewalk’s access for Patti, there is also a curb cut still buried under the snow to Patti’s left.

But that is a project for tomorrow. Today was Valentine’s Day, Patti seemed impressed visiting our snow canyon before we headed off to some fun and dinner at Hollywood Casino at Penn National Race Course.

We spent a couple hours enjoying penny slot machine physical therapy with Patti alternating her left and right arms as she pulled the slot machine lever, with of course breaks for cigarette smoking therapy for eye hand coordination. Started with $10 and cashed out with $11.01!

Laughter and good times are accessible. Too often their greatest obstacle is time and effort.

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

get your caring mojo going

Once upon a time, by one magical ‘dawn's early light’ …

‘we the people’ were blessed with snow from ‘sea to shinning sea’.

49 states dusted with snow; Hawaii's the holdout 

Get your caring mojo going! Living with a disability is living on the edge whether independent or assisted. There is no extra time in a day.

Embrace winter! Enjoy snow! Look around and CARE. Helpful services such as ‘Meals on Wheels’ are often suspended. Would you like to go without a meal for a day? Wondering why your neighbor’s driveway is not shoveled? Stop wondering – shovel it.

As the inches pile up, so do your chances to care.

Here is an excellent example from the Nation's Capitol:
Schools Ask Community To Help Shovel Out

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

activities of daily living / child of the north wind

While a snow storm may temporarily inconvenience “the things we normally do in daily living” imagine your personal activities of daily living (ADL) slipping out of your control permanently.

Multiple Sclerosis is a relentless and random thief of one’s abilities to perform ADLs. There is no thawing change in seasons.

Maybe it is because winter and snow have always been energy sources for both Patti and I that the unfairness of MS seems more outrageous.

Patti was an avid skier and with her long term memory more vivid these days than her short term memory well snow storms trigger recollections of slopes of powder. All the more I wanted to rail at the heavens when I went to pick her up for our pre-blizzard outing and watched her needing the assistance of three aides plus a Hoyer lift and sling to get out of bed, changed, and dressed.

Instead I found strength from her good spirit and laughter through it all. No lift tickets these days but instead a wheel chair accessible smoking lounge on wheels.

Heading back home it was time for me to take on Winter. Since Punxsutawney Phil saw his shadow on Groundhog's Day, 40” (1.02 m) of snow has fallen on our little piece of the Earth.

Piles of shoveled snow plus drifts are getting rather epic. Media talking heads claim we have more snow than the Vancouver Winter Olympics.

Conditions were so bad on Wednesday birds took shelter in our lilac bush shielded from blizzard winds.

While I battled to keep the driveway clear, township snow plows arrived as the storm was kissing us good bye. Trying to maintain our tradition of picking Patti up for a post storm outing I was foiled as Pennsylvania closed three major Interstates, which in turn transformed secondary roads into parking lots.

Alas! At least as a fellow child of the north wind, Patti knows that sometimes the mountain wins.

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

shoveling snow for a cat

22 inches (56cm) of snow can affect life, yet cats help us all keep it in perspective. Our cat, “Stardust” could not push open the flap on her cat window this morning. It was time for yours truly to get busy, and supervised.

Before I could start on our vehicles and driveway, additionally a cat trail was necessary in the back yard.

Back in December a 22 inch (56cm) snowfall left me stranded for two nights. This time it was on my home court, bring on the rematch!

Unquestionably heavy snow falls also affect both visiting and/or outings with Patti. There is some intangible balance between safe travel conditions and keeping Patti part of life outside her care facility walls.

"Neither snow, nor rain … stays these courageous couriers …” Yes, the Greek historian, Herodotus was referring to Persian mounted couriers, 2500 years ago, but it equally applies to caregiver mentality.

So we bookended the snow storm with outings. Lunch and errands as the first snow flakes fell, Friday afternoon. Then after spending today shoveling, I managed to navigate our wheel chair van for a Saturday evening outing.

Interestingly I found Patti already in bed when I arrived to pick her up. She told me she was not feeling well and had been throwing up all day. Not that I do not believe her but I know that Multiple Sclerosis related memory loss and mental confusion sometimes gets the better of her. Checking with nursing staff and aides they were not aware of any vomiting, nor had Patti complained of not feeling well. Whatever! The offer of an outing and a ‘smoke’ instantly cured the patient and she was ready to roll.

While we managed to be out and about, few others could say the same. “Pennsylvania Gov. Ed Rendell declared a statewide disaster emergency … National Guard forces were deployed to help state police” Unfortunately, not much was open, even McDonald’s was closed!

Yet one wheelchair van rolled through the streets with two occupants having a grand old time enjoying the snow.


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

‘one horse sleigh’ of the neighborhood!

NOTHING can rival the embrace of a snow storm. With swirling snow falling around you whipped by wind chills of zero degrees Mother Nature hugs you as only a parent can hug a child. It is magical!

In such good spirits we headed out to visit Patti this morning. Unbelievably as picture of parking lot shows we were alone and Patti had the ONLY visitors of the day. She was in good spirits and enjoying watching the falling snow out her window. In her youth a skier, now Patti is happy watching snow.

It wasn’t that many years ago that in her scooter days she used to pull neighborhood kids around in their sleds behind her Rascal all terrain scooter until the snow became too deep. She was the ‘one horse sleigh’ of the neighborhood! <grin> MS was not going to stop her in those days.

People spend thousands to travel and play in snow for a vacation but when a forecasted foot of snow falls in their neighborhood it becomes an ‘excuse’. Go figure!