Our wheelchair accessible van entered our lives only a year ago even though Patti has been using a wheelchair and/or scooter for at least 15 years.
I refer to it often enough so I thought it was time to show those unfamiliar with such a machine how it works (in under two minutes <grin>). Click video to play.
Multiple Sclerosis may shape circumstances. MS does not ‘define’ family. Living with MS as a family, Patti is totally dependent on others, as she has been for much of the last 10 years.
Sunday was a typical ‘family day’ centered on a movie theatre outing. The mega screens and the right movie choice can negate her MS symptoms of visual impairment and cognitive and attention span challenges for an hour or two. Simultaneously a movie is entertainment for the rest of the family.
Wildcards always loom such as MS related Dysphagia triggering choking or emesis, and/or the absence of bladder and bowel control. Newbies may balk at these wildcards, with time you learn to live with them, be prepared, and hedge your bets. If a psycho astronaut can drive a thousand miles in a pair of Depends, then Depends can get Patti through a two hour movie.
Choosing “300” this past weekend was a surprise. I can’t remember the last time that Patti, myself, and our daughter (home for spring break) all agreed on amovie choice. <grin>
As often happens when we arrive at a popular movie, the designated companion seats adjacent to wheelchair cutouts were all occupied and embarrassed patrons sheepishly begin to play a game of getting up and milling about while waiting to see which seats we actually take before racing to grab the remaining seats like musical chairs. <grin>
“300” was enjoyed by all and uninterrupted by MS symptoms. While it could not have been a better outing, plans to visit for dinner afterwards were torpedoed by loss of bowel control in route and we reversed course home for changing and clean up.
Lacking the lifts and multiple personnel of a care facility this is easier said than done. However, it CAN be done.
You get past it and adapt. MS may shape the day but it cannot define family, only the family can do that.
Not unlike the “300” some CHOOSE to define and guard their own Thermopylae.
Oversimplified, yes, but the above piece of electrical cord has been our family’s ‘quick and easy’ MS teaching aid for years.
The wheelchair accessible van era almost a year ago enabled Patti’s first return to a grocery store. She was as interested and excited as if I was pushing around a third world visitor. <grin> Yes, it had been years but it was amplified by her Multiple Sclerosis progression of memory and cognitive loss.
We simply plunk a store basket in her lap and make frequent shorter trips to accommodate the paradox of her enjoyment but shorter attention span.
Usually it’s challenging to get Patti started in conversation but handing her things to put in the basket unleashes chatter, though unpredictable. <grin> … “I don’t want this, you can have it back.” … or “YUCK!” … or “I like this, I remember …”
It’s a different and fun dimension. Additionally it exposes Patti to and causes her to ‘think about’ the processes of living, prices, products, necessities, and such. When everything is done for you it is easy to forget “how” it all happens, especially when MS is attacking your ability to reason and process information. Frequent and fun outings to the grocery store create a kind of casual cognitive rehabilitation.
Following a German III class, our daughter observed that our more frequent grocery trips were “European Style”. That has a classier ring to it than running to the grocery store every other day. <grin>
What Patti has lost in vision has been compensated with sense of smell; she can FIND the pickle barrel like a hound dog. The produce department, deli, seafood, and butcher counters are particularly enjoyable not only because of smell but they are essentially interactive. Counter attendants are suckers for people in wheelchairs. <grin>
Whenever I encourage her to get anything she wants on her own. I watch as she rolls a few feet, stops, and returns - “I forgot what I wanted”.
Self check out for some reason entertains Patti. She however feels the voice prompts are too polite. Tuesday evening in response to the computerized voice asking “Do you have any coupons?” Patti lost control of her own voice volume and shouted back, “NO! and you can kiss my a#*!” before falling apart laughing heartily. … Yes, it’s live from MS Awareness Week! <grin>
Stopping by Giant Food last night with Patti it occurred to me that grocery shopping is a common denominator task anyone can relate to and might serve to help understand living with Multiple Sclerosis for our ‘alternative’ MS Awareness Week.
In the earliest years of MS, while still walking, Patti’s shopping would be disrupted by sudden fatigue or problems of balance while trying to stand or reach for an item on a shelf. Facing long check out lines could lead to an abandoned cart because fatigue was overpowering.
With the advent of the scooter era, Patti would actually ride her Rascal Scooter to the local grocery store. Her visits were not only restricted by the capacity of her scooter basket but by logistics of a store built and designed for people walking upright.
Before today’s ‘super stores’, aisles were so congested with displays that they were nearly impossible to maneuver through with an electric scooter. Patti would find herself navigating through a tightening maze … and more than once rammed a display. Intentional? I can only speculate. <grin>
At your next visit to a grocery story just look at how few items are really within reach of someone in a sitting position. When you notice an unattended shopper in a wheelchair or scooter looking up at a shelf, have you ever asked “Can I reach something for you?”
With visual impairment progressing to legally blind the era of independence ended. Additionally transferring Patti to and from her wheelchair to our car became increasingly challenging and undependable. Patti’s visits to a grocery store simply ended and disappeared from Patti’s experiences for years.
Hunter gathering became solely a caregiver task.
Patti as a formerly able-bodied able-minded person fought valiantly to adapt and survive as the metamorphosis of MS enveloped her body and mind.
Grocery shopping is only one simple common denominator activity to help translate MS. In reality ‘every thing’ you previously took for granted changes.
That was ‘then’ … tomorrow I’ll share about ‘today’.
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P.S. If ever considering an electric scooter? … Patti’s Rascal Scooter is over 15 years old and runs like a champ. She used to travel on local roads driving sometimes 10 miles a day or more on errands. She’s pulled sleds through snow, and been able to be part of family activities on all terrains.
While the NMSS is proud of their new advertising agency Wieden & Kennedy; I personally am left wondering if able bodied, able minded marketing firms ever really grasp what “living with MS” is really like.
I read that Wieden & Kennedy (clients include Coca-Cola, Nike, Starbucks) worked pro bono designing the “Join The Movement” campaign. Kudos to their altruism!
We on the other hand live with Multiple Sclerosis in a near parallel universe to the media image. So I’ll do my best to offer an alternative ‘Real’ MS Awareness Week of “living with Multiple Sclerosis”.
Currently I am beginning the third month of trying to stabilize Patti’s private prescription plan coverage. This happens every year with insurance carriers both private and government seizing year end changes in laws, policies, and carriers to fish new streams for profit.
Dumping a person with a 22 year history of Multiple Sclerosis, or finding a loop hole to cancel or avoid payments seems to be the “principal” of the business of US healthcare insurance. That the person in question has serious cognitive challenges is like blood in the water to sharks. … The caregiver is the ONLY line of defense.
Medical insurance and prescription plans are REAL issues when living with MS. Multiple Sclerosis is a chronic illness, Patti has been diagnosed for 22 years. Insurance plans change, carriers change, employment changes, life changes – but MS progresses. Medical needs increase.
Medical and prescription insurance plans turn even the simplest change into a war. The anxiety, the worry, the increasing money, and exponential increases in time devoted to this one area devour us.
Multiple Sclerosis Awareness Week
March 5 – March 11
Clicking the button above will display this year’s campaign by the National Multiple Sclerosis Society (NMSS).
“Living with Multiple Sclerosis” is not exactly a formula for a light n’ lively sitcom, nor is it all gloomy. It’s simply a journey shared. … How best to share this information? Well, I simply blunder along chasing technology.
Sometime yesterday the 1,000th viewer watched our debut broadcast on You Tube, living with MS: wheelchair rollin’ (Originally posted October 5th, 2006 and embedded here again for this anniversary benchmark).
200 people a month, on average, watch this one 3 minute video slideshow on You Tube accompanied to “Proud Mary” by Ike & Tina Turner.
50 people, I estimate, read any single Caregivingly Yours, Journal entry. (A formula of hit counter divided by months divided by average number of entries.)
Journals and You Tube can no more be compared than apples and oranges. Yet it seems if you have a message to share, then people ARE “watching”.
…. except Stardust who 'needs' only a sunny window.
I want to thank Jackie of AOL Journal Life In Bama. Like a cyberspace muse, she encouraged me this past Fall to stumble my way onto You Tube.
Click on the following link if you would like to visit a menu page of our six You Tube broadcasts to date …
While Multiple Sclerosis cognitive challenges “affect” Patti …
As a caregiver there are times anxiety slithers across whatever I’m doing. What ifs, derailed dreams, and future fears ricochet about like pin balls. Sometimes it is easier or more bewildering to get under control.
I always need to remind myself to be careful not to view interactions with Patti from an able bodied / able minded perspective. Since like most caregivers I walk in both worlds sometimes the switch can get stuck.
Engage on whatever level is available. … Avoid words/concepts such as disappear, loss, etc. Whatever challenges memory and cognitive impairment may present they are really challenges primarily to me on the outside looking in.
Humor is simple yet potent. The cognitive processing of humor involves so many parts of the brain it may be the best of possible ‘mental work outs’. Plus this is the USA; culturally we are not a people of sophisticated or complicated humor. Anyone can be funny enough. Don’t let your own frustrations or intimidations with someone else’s health prevent you from trying.
Reality will always be waiting for you.
“When we remember we are all mad, the mysteries disappear and life stands explained.” Mark Twain
Last week's Valentine’s Day 2007 snow was our first winter storm owning a wheelchair accessible van. (2002 Dodge Grand Caravan ES / IMS RampVan Conversion).
Dashing through the snow
In a (wheelchair accessible van)
Through the (streets) we go
Laughing all the way.
It’s no SUV, but with the extra vehicle weight from the lowered steel floor and four Michelin Hydroedge 17” tires traction was excellent in snow and ice.
Icing of the door track was the only major problem. For the ramp to unfold the door must be able to slide open. It took significant time to clear not just the couple inches of ice and sleet from the roof of the van but from all the grooves and niches of the sliding door track.
Like a mechanical bird unfolding a wing, we need at least 4 ft clear on the passenger side for the ramp to unfold and to successfully roll Patti out in her wheel chair. … Plowing of parking lots, store fronts, streets, etc obviously creates piles of snow. In general, they are either too high to ramp across or too uneven to ramp onto. … It just takes some cruising around to find an optimum spot.
The ramp itself has some space age surface that is NEVER slippery which is great when you are the one pushing someone up and down the ramp. <grin>
In past years with Patti’s Multiple Sclerosis progression, transferring from wheelchair to car was treacherous on snowy and icy surfaces. Now she’s bundled up comfy in her wheelchair and it’s just a matter of pushing Patti up the ramp into the comfort of the accessible van.
Bells (as the ramp folds up) ring
Making spirits bright
What fun it is to ride ...
Pictured I’m enjoying a coffee break during igloo construction or otherwise known as playing while chopping my back patio clear of ice and sleet.
Finally finishing the driveway, paths needed to be to chop clear to the trash can bin and the bird feeder.
Sizeable blocks of ice enabled me to give my igloo a Stonehenge facade as pictured below …
As I dragged the facade into place I found myself chuckling over a scene from the film comedy classic “This Is Spinal Tap”, “I think that the problem may have been that there was a Stonehenge monument on the stage that was in danger of being crushed by a dwarf. Alright? That tended to understate the hugeness of the object. …” … Funny how we can remember movie dialogue at the strangest times.
Anyway, still chopping away from South Central Pennsylvania … and LOVING Winter finally arriving.
This Valentine’s Day Winter Storm has been interesting to say the least.
As if driven by premonition Patti and I went out for lunch early in the storm in picturesque falling snow. We gained a giant helium balloon that when tapped sings a couple bars of “How Sweet It Is To Be Loved By You” (the old Motown version). … I’ve found over the years that charmingly annoying Valentine’s presents are remembered, <grin> especially when Multiple Sclerosis robs your memory.
Later I was to find my driveway and car encased in ice! No shoveling of the driveway, no snow angels! I had to chop my car out and chop my driveway clear. Pictured below are some samples of the approximate 2 ft polygons of ice varying in depth from 2” to 4” that I methodically chopped with my garden spade and carried to my lawn.
… If I had fallen backwards onto my frozen lawn to try and make a snow angel I would have suffered a concussion. <grin> … Of course, don’t you just love it when you get the driveway clear and the snow plow deposits a wall of ice and frozen sleet blocking your driveway? I felt like I had moved an iceberg.
To top off the experience, Peter Pan tried to poison me! There is nothing like a good thick peanut butter and jelly sandwich when fighting a winter storm. One tasted sooooo good I fueled myself with several. … Shortly I found myself fighting the storm while drinking a bottle of Extra Strength Mylanta for a sudden, unexplained severe attack of gastrointestinal distress to pain. … Watching the news Thursday evening I noticed a story about the CDC and salmonella in Peter Pan peanut butter which displayed the control numbers from the shipment beginning with 2111... Checking mine, sure enough my now "nearly empty" jar was from the contaminated batch. Is nothing sacred!!!!
Living with the failing US healthcare bureaucracy it’s also important to remember the people who wear the proverbial white hats, the ‘good guys.’ They are out there, whether serving as doctors, nurses, aides, med techs, or hourly computer office workers.
There are plenty serving the ‘dark side’, but do WE do enough to say thanks to those who wear the white hats?
In a comment to my previous entry, Jaymi of AOL journal Throw Me A Bone mentions she’s sending her nurse practitioner cookies “because she's the only one who returns phone calls promptly”. … That’s the spirit!
Whenever I visit my nurse practitioner's office I try to take a bag of sugar free Hershey candy to add to the office bowl of treats they have at the check out counter. … It’s not much but it says thanks, and buys miles of good will.
Since Patti’s admission to a care facility we have given a Christmas present each year of a three month fruit club to the staff on her unit. A delivery of a couple pounds of oranges and tangerines can easily be shared between all the staff members of the three shifts.
“Thanks” can be as simple as a thank you card following an appointment or a letter acknowledging a particularly helpful or courteous staff member. A letter ending up in someone’s employee file you can believe is “remembered” and appreciated.
Time itself can be a gift. Rather than call for RX refills which not only ties up phones but pulls office staff away from patients to write down my needs, RX numbers, pharmacy number, etc. I simply fax the office with a brief one page fax including all necessary information. … I’ve never found a medical office staff that did not appreciate this simple courtesy.
Do unto others …
Battling the healthcare bureaucracy occupies too many days.
The hours of a futile day end too quickly yet the clock never seems to change through the night as I wait for hourly employee bureaucrats to return to their offices and phones. Weekends drift through dangling conversations as thick as Spanish moss.
“A Harvard-based study … commissioned by the National MS Society … published in the journal Multiple Sclerosis (1/29/2007) found that many reported …
· high levels of stress and difficulties related to affording health care services and medications.
· spending less on food, heat and other necessities to pay for health care needs
· not filling prescriptions or skipped doses of medicine
· worrying “a lot” about losing or not having health insurance and about whether their health coverage might change.
While I guess statistical solidarity is reassuring, I KNOW that because Patti's cognitive symptoms prevent her from fighting for herself, in 2006 I spent over 1000 hours battling the insurance bureaucracy. From September of 2004 through August of 2005 I logged 2000 hours in my day planner (I’ll do the math for you - that’s a full time job). 2007 is shaping up to be another donnybrook.
Additionally, the care facility era is about teamwork and not all players are as experienced and committed.
Whether “private” or “government” the bureaucracy of health care forces you to get into the mud and fight for everything when you live with a chronic progressive illness. … Why? I believe after two decades that the business of medical insurance would prefer Patti to just go away.
In frustration I often wonder how many bars of “Pontius Pilate Hand Soap” are in bathrooms across the U.S.? … Millions of Americans have retirement plans with stock portfolios of insurance, pharmaceutical, andhealthcare companies. Directly or indirectly they “expect” profits. Who is the bigger part of the problem, stock holders or the hourly employee bureaucrats, just doing their jobs?
As long as our US health care system is driven by profiteering it will never serve any master except profit.
“It's a poor sort of memory that only works backwards,” observes the White Queen in Alice Through The Looking Glass. If you are reading this, then that is basically how your properly functioning memory works. Scanning methodically backwards searching for any recall you may have of Alice’s encounter with the White Queen.
Once cognitive symptoms begin to affect memory unpredictable things happen.
With a brief snow shower Friday afternoon I picked up Patti for a ride in the falling snow.
Suddenly, Patti surprised me by talking about her skiing days. Riding in the falling snow reminded her of riding to Ski Round Top. … I say this surprised me because those are long term memories, certainly longer than I have ever known her. Additionally Patti is rarely chatty any more, mental confusion symptoms challenge conversation. Yet oddly in recalling these longer term memories her ability to communicate was smoother.
With progression of her Multiple Sclerosis related memory symptoms it is more and more common for long term memory to kick in more vividly than shorter term which is a mess.
Another example is when her parents play Trivia Pursuit and involve Patti. She can be astounding at times recalling isolated “trivia” from long term memory. Yet she can not tell you where our daughter attends college today.
Malfunctioning memory is more than just baffling. Memory lapses or warps between present and distant past can easily place an unattended person at risk. Plus there is always the emotional aspect for family and friends of “lost” shared memories or even your own existence in another’s memory.
It is easy to get hampered by our “poor memories that only work backwards”. It takes understanding, creativity, and sometimes luck to work with progressing memory challenges.
Happy GroundHog Day from “high tech” Pennsylvania where furry rodents are dragged from their sleep to predict the weather!
At Gobbler’s Knob in Punxsutawney this morning the “Prognosticator of Prognosticators” has been interpreted! Phil predicted an early spring.
It's kind of sad since I haven't even seen "Winter" or any snow yet.
For more than you may ever want to know about this tradition you can visit …
Shhh ! … don’t tell P.E.T.A.
New York Governor Eliot Spitzer (D) revealed his plans for a "patients first" reform of health care.
California Governor Arnold Schwarzenegger (R) unveiled his plan for universal health-care coverage.
Pennsylvania Governor Ed Rendell (D) is touting his ultimate goal of providing medical coverage for every resident while reducing health care costs statewide.
40% of the Electoral College votes necessary to elect a President are held by these three states. … Is it any wonder that Presidential candidates of both parties are banging the health care coverage drum across the USA?
It’s nothing new that health care gets dusted off every Presidential election and then forgotten. However I don’t believe I can remember Governors of 3 of the most populated States going to political war over health care coverage.
If you have coverage, at the moment, then this may all seem like such a non-issue wrapped in a possibly false sense of security.
If you don’t or if the ever increasing costs are shrinking your personal or family resources than you know how critical this issue is and will be for everyone.
It’s complicated, the deck is stacked, and genuine reform can seem overwhelming. ... In 22 years of living with Multiple Sclerosis as a family we’ve known too many 'masks' and 'faces' of health care coverage and prescription plans.
Is this finally the time someone cuts the Gordian Knot entangling this mess? I'd like to hope so.
"The key thing is not to get caught up in ... how you get there," Gov. Schwarzenegger said. "The key thing is, we're going to get there."
