the straw that stirs the drink

Living with Multiple Sclerosis as a family I used to feel was a parallel universe … and frankly it still is but when changes in other family members occur it becomes more like a benevolent maelstrom … swirling together Patti’s MS, my lung cancer DX, and the death of Patti’s father.

Through Patti’s eyes (MS dementia and cognitive impairments) I have no lung cancer, her Dad’s in heaven and an afternoon of family fun is just that … fun and laughter. She is practically the straw that stirs the drink.

Empowered by our daughter boldly facing the unimaginable herself … listening to their banter driving … I sit in awe.

--
Patrick Leer

Health Activist:

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

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

27th wedding anniversary

A Contemporary 27th anniversary gift has a theme of Sculpture. While we could waste pages arguing the art and function of the visual arts, what could be more apropos than the plastic pole blocking people from parking in hash marks next to wheelchair accessible van parking at Hollywood Casino?

Barrier free makes Hollywood Casino accessible but when some one is as visually impaired as Patti a Super Jackpot Party slot machine cranking out an endless stream of disco music and frequent amusing interactive bonus rounds makes it downright entertaining? You only have one 27^th Anniversary.

When a couple hours of play cost us a whopping $2 in total gambling losses, what’s not to like.

by Patrick 

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

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

Technorati Tags: multiple, sclerosis, MS, caregiver,

wheelchair accessible van parking

Wheelchair accessible van parking usually is somewhere between what ‘should be’ and the reality of what is.

According to Americans with Disabilities Act (ADA) Handicap Accessible Parking Regulations:

Van Accessible Spaces must provide an access aisle that is at least 8 feet wide next to the van parking space to permit a person using a wheelchair or scooter to exit or enter a van with a side-mounted lift.

That access space is always clearly marked with boldly striped markings on the ground.

Yet too often we will find another vehicle with a disability parking plate or placard squeezed into that loading space.

While not a problem for us, as I can always climb in and maneuver the van to deploy the ramp - however a wheelchair user / driver is screwed having no choice but to wait for the other driver to return and move their vehicle.

So I must give a blogosphere shout out to Hollywood Casino at Penn National Race Course! I was stunned to see such a completely sensitive, low tech, ingenious and effective solution to the problem when we visited Friday evening.

By simply drilling a couple holes in concrete and adding a plastic pole with reflectors they have made that adjacent loading space impossible for cars to park in yet leaving it completely functional for deploying a ramp or a lift.

It may be worth a pilgrimage just to see what is possible when a facility actually ‘tries’ to be accessible rather than ‘complies’. The ingenuity and simplicity leaves me in awe. 

“don’t forget the cannoli!” …

     Fugetabout a MS unfriendly forecast of hot and humid with showers. Instead we spent about 3 hours in a fun air conditioned environment with the freedom to choose to smoke or not smoke. Appealing physical therapy for Patti alternating right and left arms pulling slot machine handles. Watched horses race in the mud and people whoop and holler playing dice. Enjoyed some cannoli and lost a total of $2.50 playing slots. – What’s not to like when you can spend an evening out for under $10 anywhere anyhow?

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

caregiving: an evening at the races

Hollywood Casino at Penn National Race Course is surprisingly not wheelchair friendly. 

                             

Arriving I followed signs to “accessible van parking”.  Spaces designed with adjacent area blocked out for ramps or lifts to deploy. However, every space was occupied by a regular passenger car. … Instead we cruised the parking garage looking for an end space on an aisle to deploy the ramp. 

Doors from outside to inside whether off the parking garage or to the casino display a wheelchair access sign but we could find NO controls. An unattended person in a wheelchair would be hard pressed to open and enter outward swinging doors.

Beware! There is a crisis in South Central Pennsylvania with people moving furniture. Every chair in front of a slot machine was bolted to the floor. Management must assume people only use wheelchairs or scooters for convenience not necessity.

Yes, you can find a manager who can direct you to a security officer who can contact a security supervisor who can contact a maintenance engineer who can unbolt and remove the fixed chair to allow wheelchair access. That took 20 minutes on a non-busy Wednesday evening.

I believe I dead-lifted transferred Patti half a dozen times in and out of her wheelchair to a bolted chair to check out machines before choosing one. Everything from color contrast to height or slope of machine face can affect Patti's MS related visual challenges.              

Pictured are Patti, her Mom, and top of her Dad's head enjoying the ‘chosen’ slot machine.

A highlight was Penn National Race Course adjacent to the Hollywood Casino. Literally roll out the casino door and you are at the track.

Patti’s wheelchair could basically park at the rail. Between proximity and the size of a horse and rider it was visually impaired friendly entertainment.

              

Washed by an earlier summer thunderstorm the evening could not have been more beautiful. 

          

Never confuse accessibility challenges with a good or bad time. Caregivers, family, and friends can usually overcome obstacles.

Good times are CREATED from time spent together. 

Caregivingly Yours, J Patrick Leer

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

Tags: caregiving, carer, spouse caregiver, Multiple Sclerosis, wheelchair, accessibility, Hollywood Casino, Penn National Race Course, Harrisburg, Pennsylvania