The end of an era – accessible transportation

Facing an estimate of $1,500 in repairs to pass Pennsylvania inspection … our personal wheelchair accessible van era may end this week and it's not just the money … 

… Since beginning 'aggressive chemotherapy' almost 12 weeks ago, I can no longer lift or transfer Patti due to fatigue from chemotherapy to combat Stage 4 Lung Cancer. (My Lung Cancer Odyssey)… NO more ‘off road’ wheelchair pushing through accessible trails. … basically no more ‘physical caregiving’ on my part ... take physical caregiving out of the equation and is an 11 yr old van with 160,000 miles worth it?

Last week sitting in the chemo lounge I watched a couple use ‘the hug’ – one person unassisted transfer from recliner to wheelchair with healthy spouse transferring chemo fatigued spouse … how many times have I done that through the decades … hundreds? … thousands?  … the key word here is ‘healthy’ spouse ... and I can no longer qualify as the healthy spouse.

When operating a wheelchair accessible van one must still need to be able to lift or transfer your passenger as a failsafe. … Even my visits to Patti’s care facility have been seriously impaired by my chemo reduced immune system.

Visiting is down almost 2/3 for me … 

Does fighting to outlive Stage 4 Lung Cancer trump a quarter century priority for spouse caregiving for Multiple Sclerosis?  … Most days I awake to find myself so conflicted that I am alive and fighting to outlive lung cancer … yet ‘hands on’ involvement with Patti’s care declines.

 … her MS related dementia impairs her awareness of any of these changes … she rarely remembers I even have lung cancer much less am fighting to outlive it.

Patti did not choose Multiple Sclerosis any more than I chose Lung Cancer … however a quarter century ago I chose to juggle spouse caregiving and basically single parenting ... now we enter a yet another new era in living with MS as a Family…

A dear friend sent me a note of encouragement from the poet Audre Lorde …

“I have come to believe that caring for myself is not self-indulgent.  

Caring for myself is an act of survival.”

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,

Memorial Day with a Civil War Veteran

For Memorial Day 2012 we decided to do something different - go quest for a veteran ancestor. Late last Fall I had played around with ancestry.com stalking dead ancestors with clicks of a computer mouse but now it was time to get real.

Patti’s paternal great-great grandfather, while unknown in her family oral history, still seemed from my research our most promising quest.

George R Decker (1833 – 1915) fought in the US Civil war with the 17th Pennsylvania Cavalry. A lifelong Pennsylvania farmer he fought through and survived three years of Calvary engagements in most of the battles of the Eastern campaign of the Civil War including Gettysburg.

I knew from his Civil War Veteran’s records that he was supposed to be buried in New Freedom Cemetery and after driving around the cemetery and then pushing and pulling Patti’s wheelchair through the tombstones and over many deceased, eureka! we found him .. and his wife, too.

We had brought along a picnic basket and bottles of ice water. ‘Real feel’ temps of 94˚F (34.4˚C) were not Multiple Sclerosis friendly but by frequently applying a frozen bottle of ice water to the back of Patti’s neck, it worked like her personal air conditioning … and our air conditioned wheelchair van was nearby if needed.

To our pleasant surprise and as if conjured up by some ‘Americana’ movie set to complete our picnic, a 'small town America' Memorial Day program was being set up in the cemetery. People soon began to walk by us carrying folding chairs and coolers, scouts had flags and flowers. A small local brass band began to play military songs through the years.  

Still hangin’ out with George and Lydia, soon we found ourselves laughing and singing along to snippets from songs such as “It’s a Grand Old Flag”.

As the band finished their tribute to the Civil War including both Battle Hymn of the Republic and Dixie it was a perfect time for us to say goodbye.

What more can you say to a guy who had actually been at Appomattox Courthouse when the Civil War ended … except thank you.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

dental health Multiple Sclerosis

Multiple Sclerosis does not make dental care easy.

Long story made short Patti was less than cooperative at her last failed checkup. Fortunately there is a positive end to this story.

Believe it or not there’s at least one dentist who prefers the freedom of not having an office practice, traveling between care facilities and nursing homes.

Rather than just leave it alone he called me with a plan.

What if … he revisited after Patti had been given a dosage of Ativan/Lorazepam beforehand, the proverbial “chill pill”. Adding me to the mix could improve success because in the care facility era “no means no” for professionals, only family/POA can ‘persuade’ a patient.

Arriving I transferred Patti to a geri-chair, a recliner on wheels.  I was blown away by the mobile dentist office set up, it had everything except musak.  (Rummaging about I found a boom box and a CD of new age music and fixed that.)

Patti (under the influence of Ativan) was a model patient and the dentist was a godsend. Patti’s dentist prefers the life of mobile dentistry. He loves its freedom and its focus on patients.

Patti’s teeth were cleaned, polished, and cavities filled. Only the high speed drill which sprayed water seemed to agitate her. I quipped it was just the tooth fairies waterboarding her. “Little bastards” she mumbled and with a smile her calm returned.

Afterwards, we talked about new solutions because status quo is not working. Apparently an electric toothbrush is a win-win because in a pinch it can be used simply with water, eliminating the whole rinse and spit challenge. Regardless of MS and all its challenges, dental care cannot be trivialized. Brushing teeth is social behavior. Visiting or outings should include teeth brushing rather than depend on staff, remember staff can be told ‘no I don’t want to’. Thinking outside the box is a must.

Since it was 60˚F (15.6˚C) afternoon in February, and the geri-chair fit in our wheelchair accessible van, I took Patti to the park in her rolling recliner for a reward before a well-deserved afternoon nap.  

Related previous entries:

a trip to the dentist (Jan 2006)

teeth brushing smiles (Feb 2009)

dental care Multiple Sclerosis (May 2010)

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

pushing and rolling through nature's rage

How chronic illness / disease or disability was left out of those biblical plagues is beyond me. I suspect it has to do with my Hallmark conspiracy theory about ‘get well SOON’ cards. People just do not do duration well. Bring on the frogs and boils just as long as “the Lord spake unto Moses” – how long?

Not to make light of natural disasters but they do have an end and involve words like recovery. Multiple Sclerosis and/or MS caregiving do not involve endings nor recovery. One of the intangible aspects of caregiving is ‘crises management’, 24/7 year in year out.

Recently we rolled and pushed our way through two weeks of natural disasters: earthquake, hurricane, tropical storm, and record flooding with our wheelchair accessible van ramp lowering like the proverbial staff of Moses.

While the East Coast felt and freaked over Virginia earthquake we found ourselves out enjoying an afternoon outing in Valley Meadows Park, eerily empty of people.

We were intrigued by wheelchair switchbacks built into the Forbes Path where grade was steep. Wheelchair ‘friendly’ is a world of difference from wheelchair accessible.

Later after Hurricane Irene finished trying to huff and puff and blow the town down, it was time for rollin’ along the sidewalks.

While Tropical Storm Lee was busy dumping nearly a foot of rain over several days, well … there were always home improvement mega stores with acres under cover to roll around in.  Considering the streak of natural disasters they were also community social centers - and already decorated for Halloween!

I need to give thanks to Cumberland County Department of Public Safety Facebook Page which made moving about in real time so easy and safe.

While safety is always first, living with MS can be isolating under normal circumstances. When all anyone is talking about is earthquakes, hurricanes, and floods mix that in with MS symptoms and disabilities and it’s too easy to add worries. Sometimes you have to lower your ramp and stick your head out.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

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 

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

was it a tornado?

“In Cumberland County, police scanner reports around 6:50 p.m. stated that a tornado touched down” Severe thunderstorm hits Cumberland County

Just about that time, I was pulling up under the porte cochere of Patti’s care facility as all hell broke loose. Wind and rain blew so hard horizontally that cover meant nothing. Hail began to pound the rear window so hard I fully expected it to burst especially as hail grew to the size of jawbreakers. One extraordinary burst of wind briefly lifted the rear of our van and we watched pieces of the porte cochere blow off and disappear into the maelstrom of rain, hail, and wind in front of us. Power inside the facility failed and soon weighted outdoor furniture and trash cans were blowing by. With a loud crack the facility sign joined the casualties.  

How nothing hit our wheelchair van is beyond me but I am grateful. When wind slowed enough to open my door without it being ripped off I pried open the once automatic doors of the facility to see what was happening inside.

Not only was power out but back up generator had blown. Staff was executing tornado emergency procedures and getting everyone into wheelchairs and into halls away from windows until tornado warning was lifted.

Determining that we had power at home, I slalomed home on roads littered with trees, tree branches, puddles more suitable for boating than driving, and void of operable traffic signals. Emergency vehicles screamed in all directions.  

Around 11 PM the care facility called to inform me the tornado watch was lifted, emergency generator was working and full power was expected by 1 AM.

No guarantee our home power would stay on with more thunderstorms forecasted overnight, so we slalomed back.

Was it a tornado? I don’t think so. We lived through an F3 tornado in College Park, MD in 2001 that killed 2, injured 50, and left a 17 mile path of destruction. I’ll never forget the sound of a tornado, like trains racing from all directions.

All safe – that’s the only thing that really matters.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

financial assistance program National MS Society

Our wheelchair accessible van = freedom for Patti and having just applied for and received an assistance grant from National MS Society a shout out of thanks is in order to our Central Pennsylvania Chapter.

 “The Financial Assistance Program was developed to bring meaningful financial assistance to as many people living with MS as possible, with emphasis on helping people maintain their independence, safety, health and quality of life.

 We may be able to help with the following types of requests: 

• Respite services such as short term home care

• Durable medical equipment and air conditioners

• Accessibility modifications to homes or automobiles such as ramps and hand controls

• Transportation to medical appointments

• Critical short term needs such as emergency help with utilities or rent

• Health and wellness support

 Since resources vary by community, eligible items and services available in a given area may differ."

For more information click on The National MS Society Financial Assistance Program

And of course the most special shout out of all to those who help to contribute and raise the funding to make living with Multiple Sclerosis just a little more affordable and life a little more enjoyable. 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer 

knee contractures Multiple Sclerosis

Mobility is so archetypal I believe there is a tendency to simply ‘deal with’ restricted mobility in Multiple Sclerosis rather than try to work with it which invites increased risk of joint contracture. I have no alphabet after my name and my only evidence is our story of Patti’s Multiple Sclerosis progression and my 21+ years of caregiving.

                               

With progression of physical and cognitive symptoms of MS, falling was the clear and present danger, yet in retrospect joint contracture was an increasing stealth danger.

For example, once Patti could no longer safely transfer from her wheelchair to our car we ‘dealt with’ restricted mobility by purchasing a wheelchair accessible van. Safer yes but now Patti barely used her legs.

At her care facility assisted transferring by staff evolved from stand-up lifts to sling lifts.

Only I continued to use the one person transfer technique – the hug. It was this continuing involvement and use of the one person transfer that triggered the treatment of knee contractures.

At a recent Care Plan Review I had to smile as Patti is less than cooperative about her SoftPro Static Gel Knee Orthosis but here again in the care facility era  shifts of staff and perspectives eventually found the way that works. Patti is not a morning person and prefers to lounge / nap in bed rather than get up so staff has found that putting them on for two ‘lazy’ hours in the AM saves butting heads with her the rest of the day when therapy could conflict with anything or everything.

On the end result side of the equation, Patti’s ability to extend her legs is better than it has been in years and one person transfers critical to her outings are safer for both of us.

As is too often the case with MS, no one magic bullet addressed this symptom. It took teamwork, it took thinking outside the MS modalities of therapy box, it took my near daily involvement with the care facility era, and above all it took the mindset of ‘working with’ rather than ‘dealing with’ restricted mobility.

Related entries: 

March 2010 knee contractures Multiple Sclerosis

March 2009 knee contractures Multiple Sclerosis

October 2008 Multiple Sclerosis knee contractures

August 2008 caregiving: knee contracture

MS Society UK - Relieving tight painful joints    

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer