Multiple Sclerosis home improvements for accessiblity

Sitting down to write an article for MultipleSclerosis.net with all its modern cyber features and connections, I can never forget the pre-Internet dawn when I discovered I was not alone!

Less I digress, God bless technology but MS caregiving is, was, and always will be about ‘hands on’. Social Media will never pick anyone off the floor and that IMHO is the ghost in the machine.

As the spouse or family member without MS you must be the balance between supporting a hope driven life with MS and pragmatically anticipating and preparing for change.

Home Improvements For Accessibility

by Patrick Leer—June 3rd, 2013

A little back story not in the article … We bought our original home in College Park, MD. Built in 1904 and restored in 1968 it began life as a farm house surrounded by farm land in the early 20^th Century.

The sellers seemed  almost a mirror image … yet while we shopped the asking price plummeted. … the Dad had come down with a "disabling pulmonary condition" from his asphalt business and shackled with the 20%+ mortgage rates of the Carter era they were bleeding out and overwhelmed by the advent of disabling disease into their family of three.

Patti, then a buyer for Stanford Paper, pounced and fueled with the 8% mortgage of the Regan era ‘signed sealed and delivered’ our first home.. 

…Within just a couple years a DX of Multiple Sclerosis entered our lives increasingly making our home unsafe for Patti. I was surprised to find this old picture of Patti ‘standing’ in front of the house on the brick steps.

Patti’s refusal to ever let the house appear to have an accessible entrance unquestionably complicated adapting. Excuse me patting myself on the back but I built a 400 ft long boardwalk from our driveway wrapping around the house and ending in what appears to be an oversized deck, yet is basically a 'disguised from street view' wheelchair accessibility ramp ... soon our daughter and her friends were skateboarding, roller blading and bicycling along with Patti's scooter from door to street.

As these clips from real estate flyer demonstrate our house became accessibility marketable over the time we lived there. Bought by a landlord investor he quickly sub-divided it  into three 'accessible apartments.'

Never underestimate the role of extended family. Patti was, is, and will always be Harold Decker’s 'little girl' and when Dad is a tile contractor well each visit brought the loving touch of power tools to keep pace with physical progression.

-
Patrick Leer

Health Activist:

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

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

accessible parking lot paralympics

Oh, the stuff you will learn!

Looking out the windows of a wheelchair van!

Normally we just arrive, lower the ramp, roll out Patti in her wheelchair and off we go. However Labor Day morning while waiting for showers to break we observed what I can only describe as the accessible parking lot paralympics.

Even Patti with her visual impairment noticed and would ask what was that? Or there goes another one?

Over about thirty minutes, a handful or so of cars pulled in and parked with accessible parking placards. Out of each car popped at least one person who sprinted through the rain directly past our van and into an unnamed minor league baseball stadium.

Hmmm …

Sprinters certainly were not blind, nor were they unable to walk 200 ft, nor did they display any portable oxygen, nor require the use of a wheelchair or assistive device … or the more visible reasons for a PennDot accessible parking placard.

Leaving one of two conclusions …

For the skeptics - able bodied people would misuse someone's accessible parking placard for a parking pass on a rainy day.

For the optimists - a minor league ball park employs many people wearing sprinting prosthetics to work under their clothing.

by Patrick Leer

BLOGS:

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

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

multiple sclerosis caregiving

Global Accessibility Map

Stroke of genius if you ask me! To be able to check on genuine accessibility before hand – unbelievable!

“When a person has a disability, whether it’s a visual, hearing or mobility challenge, you face struggles every single day,” Hansen said. “One of the things you don’t want to have to deal with is when you want to go somewhere to then have artificial barriers that limit you from being a full part of society.” 

New website rates how accessible buildings are 

“Using Google Maps as a base, the website allows users to rate businesses and locations based on how accessible they are for people with disabilities. The website includes separate rating criteria for people with mobility, sight, and hearing issues.”

GLOBAL ACCESSIBILITY MAP

Launched just yesterday, the example I pulled up is the Smithsonian Museum of Art in Washington DC. As a caregiver it is revolutionary that not only can I find out in advance about specific accessibility details but even companion care restrooms!

START USING and filling out details of places you know! 

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

assisted shopping for clothes / wheelchair and MS

No doubt in my mind that even Job would have broken had he been ‘tested’ for over 20 years shopping without a universal sizing system through sections of misses, junior, plus, petite, and womens clothing.

Multiple Sclerosis symptoms early on impaired Patti from reading labels, trying on clothing, and driving to stores much less play Mom with our daughter.

Raised in men’s clothing where shopping is a function of waist and length, my adventures into women’s clothing have been more like the Mad Hatter’s tea party especially since the quest for the last decade has been ‘best of possible for assisted dressing’.

Non-ambulatory, Patti requires assistance with dressing. Lying prone in her bed, she can no longer even lift her butt or roll on her side. Total incontinence necessitates wearing Depends 24/7. All of the above and more leave us discriminating shoppers to say the least.

Measuring is everything. Yes, stores have wheelchair accessible dressing rooms, but no one has an adult changing table.

Curiously the only mannequin we’ve ever seen in a wheelchair was while shopping at Kohl’s captured on this camera phone picture from over 5 years ago. Kudos to progress with the debut this Spring of Mannequals.  

In search of clothes that both express Patti while seated in a wheelchair yet somehow are designed and/or sized for assisted dressing -  I push Patti through the aisles in tailor motif with my measuring tape hanging around my neck bemusing her to no end.

Even after two decades it doesn’t take long before my measuring turns to mumbling.

Soon I’m mumbling about storming the Bastille (obviously the French are behind this) and lamenting my never ending respect for the shopping patience of drag queens, as Patti laughs away like rewatching an old favorite movie.

“Patti I just had to stop and say hi, I could hear you laughing across the store!” A staff member from Patti’s care facility out shopping with her kids appears in the aisle.

Hmmmm! ‘Could hear you laughing across the store’ –  plus a couple new outfits – I’ll take that as a sign of a successful outing any day. … Up yours, fashionista!

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

where geese do the flamingo

Since the care facility / nursing home era of living with Multiple Sclerosis I find myself motivated not only by a commitment to 4-5 outings per week but an effort to make each outing 'hand picked'.

With temperatures only in the 80’s we could actually try some outside time. Parks are favorites as most are wheelchair accessible and while Patti is visually impaired nature is supportive with sounds and smells.

There is something special about enjoying a ‘ciggie’ while LeTort Spring Run chased itself over rocks and under ducks.

Nature trails in general are reasonably accessible though as pictured genuine accessibility in nature takes maintenance.

Shrinking government budgets plus more volatile summer weather can make it challenging.

That was OK we had plenty to explore. A huge wooden playground, pavilions, shady grassy areas and a spray pool  – almost a throwback to open urban fire hydrants of days long gone.

While I resisted my ‘inner imp’ to just roll Patti under it – I have no doubt were it last week with 100 degree temps we would have been rolling through there like a train schedule.

LeTort Park is not advertised as “accessible”. Divided by LeTort Spring Run, an elevated pedestrian bridge (walkers only) connects to the other half of the park.

Our half was however mostly accessible or "pushable" if determined and certainly enjoyable.

All things said and done, just relaxing and watching a Canadian Goose do the flamingo was rather entertaining.

When he or she decided to try being a songbird shattering the twilight peace with a honking serenade – I’m not sure which was louder the honking or our laughter.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

Jubilee Day 2011 dancin’ in the rain

It was a perfect morning 66°F (18.9°C) for an outing to Jubilee Day with summer heat sensitive Multiple Sclerosis.

Then it got challenging - arriving where we’ve always parked at Simpson Library, I was surprised to find wheelchair van designated and handicapped spaces occupied or obstructed by both a Cumberland County Library System vehicle and a contractor, Weaver’s Glass. There was a wide open curb adjacent to the entrance which neither able bodied driver “chose” to use.

While Patti enjoyed a ciggie, I “shared” my feelings with drivers.  

Then, back to fun – rolling the streets an hour before Jubilee Day ‘officially’ opens makes a big difference when your view is from a wheelchair - a forest of buttocks is no one’s idea of fun. Everything is ‘actually’ open anyway.

Plus there are no lines at yummy treats like pumpkin funnel cake. Patti’s parents (in right of picture) even joined us this magnificent morning.

Then the best laid plans of mice and men went astray as .8 inch (2.03 cm) of rain steadily fell over the next hour. No rain was forecasted so I had removed our rain gear from Patti’s wheelchair backpack to make room for shopping. J

While Patti and her parents enjoyed the sounds of Jazz Me under a tent, I walked back to our van. Now I have never met a puddle I don’t like. Give me an umbrella and well soon those splashes take on rhythm – “doo-dloo-doo-doo-doo-doo... I'm singin' and dancin' in the rain!”

Sheathing my umbrella and quelling my dancing feet I rain-proofed Patti in poncho and Buggy Bag® lap blanket, donned my own poncho and my happy feat pushed our rain proof selves onward.

To cap off our annual Jubilee Day outing we discovered our wheelchair van is also a perfect all-weather picnic gazebo for two, enjoying a lunch of pulled pork sandwiches with a medley of tempura vegetables (onion rings, mushrooms, zucchini, and cauliflower with ranch and horseradish dip).

Veni, vedi, vici and a doo-dloo-doo-doo …

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

wheelchair accessible: Great PA FlavorFest

Free admission! Free parking! Free tasting! Free entertainment! Wheelchair accessible! What is not to like? … only that the Great Pennsylvania FlavorFest only happens ‘once a year’ over Memorial Day Weekend.

Multiple Sclerosis symptoms are unavoidable companions in any outing.  Non-ambulatory is the big dog impacting everything from dressing and the rest of the activities of daily living to transportation. While Memorial Day weekend may kick off the summer season for many, sharing the enthusiasm for the weather is lost with MS sensitivity to both heat and seasons.  

Care giving is about making the adaptations or leveling that field. Not unlike the Indianapolis 500 or Coca-Cola 600 that dominates Memorial weekend sports, care giving is about the team behind the person in the chair. From the staff at Patti’s care facility that got her up, dressed, and ready – myself transporting and pushing her around the 35 acres – FlavorFest staff, vendors, and giant frog who patiently and pleasantly enabled Patti’s participation - team Patti kept Patti in the race to taste.

Obviously favoring her sweet tooth, Patti tasted her way through Red Raspberry, Blueberry, and Sour Cherry wines from West Hanover Winery; Peach Mist from Winery at Wilcox; Mountain Blush, Tailgate Red, Mountain Mist, and Mountain Sunset wines from Mount Nittany Vineyard until hitting the jackpot with their Rock Hill Red wine slush!

Wine slush was sooo good we bought a bottle of Rock Hill Red to make their slushy recipe at home. Bedecked in Penn State attire, Mount Nittany Vineyard staff also held the insight straight for Patti, an alumni. J

I would advise anyone dealing with mobility challenges that they do not rent wheelchairs or scooters, when it come to mobility assistance – it’s BYO.

Depending on your mobility device some parts of the Pennsylvania Renaissance Faire ground may or may not be the easiest to navigate. Manually pushed, it is all ‘no problemo’ for Patti and good exercise for me. 

As the cooler summer morning temperature gave way to MS unfriendly 81°F (27.2°C) with high humidity, a happy Patti wanted nothing more than a long air conditioned afternoon nap. 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

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

wheelchair friendly Open Stage of Harrisburg

While applause is traditionally reserved for performers, here I must applaud a theatre itself! Living with Multiple Sclerosis as a family will do that to you because accessibility is more than a concept.

The Angino Family Theatre / Open Stage of Harrisburg “had me at hello”, as a caregiver, when wheelchair seating easily displayed on their on-line ticketing screen. Upon arriving, when they removed the seat so Patti’s chair could just roll into the spot eliminating transfers they earned my highest label, “wheelchair welcoming”.

We chose to celebrate Mother’s Day by attending “August: Osage County”. What could be better than spending Mother’s Day with a “matriarch who careens back and forth between incoherency and sharp-tongued, foul-mouthed lucidity?” Theater review August Osage County

MS symptoms of dysarthia and Pseudobulbar affect which can cause Patti to abruptly and unintentionally interact with movie theatre dialogue had never been tested in live theatre. through MS 'symptom D' glasses

Plus Patti has evolved through MS changes into somewhat a practitioner of “foul mouthed lucidity” herself. cursing and swearing and Multiple Sclerosis, oh my!

Front row wheelchair seating was in such proximity visual impairment was erased, actors often performed within an arms reach, and referring to cigarettes as ‘ciggies’ (Patti’s favorite phrase) in the dialogue may as well have been an invitation.  

Shhhing Patti never works, best to just try and ‘reboot’ her with a touch redirecting her attention momentarily. I cannot even remember how many touch prompts it took to nip Patti’s inter-acting debut in the bud.

The play rocked, like riding a rollercoaster of dramatic and hilarious ups, downs, corkscrews, and loops. Minus the physical barriers it was all the more thrilling. Minus Patti’s cognitive barriers it was a whole new dimension. By the third act there I was with my hand poised above Patti’s arm and our daughter behind Patti with her hands poised above Patti’s shoulders, as if we were all reveling in the play while trying to keep her from periodically jumping into the play. J

No, it was not a Hallmark Mother’s Day moment, it was better.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer