Sunday, September 18, 2011

The Height of Mortification?

This August’s crazy weather, Scooter Follies, and some of my charmingly idiosyncratic mobility issues recently conspired to place me in a bemusedly uncomfortable position.  One evening I found myself being carried off the pool deck at the Mountainside Community Pool by two sturdy lifeguards.

Laura and I thoroughly enjoy our summer membership in the Mountainside Community Pool (MCP).  This excellently maintained facility features a fifty meter main pool with crystal clear water.  There is a wade-in baby pool and a diving tank with slides and diving boards.  Augmented by changing rooms with clean showers, a snack bar and a well-trained staff, the MCP rivals most of the area’s private clubs—at a fraction of the price.

Laura goes to the pool to swim laps after work every day.  The lane lines segregate two lap lanes on the far side of the pool at 5:00 PM.  This year I met her there two to three times a week.  She does 20 laps (1 kilometer) in a typical visit; I try to do half of that.  My kicking ability is no longer adequate to hold my legs up, so I use leg floats.  This works fairly well, but forces me out of the comfortable, streamlined position I cultivated in years of regular recreational swimming.  As Uncle Bill (William Kalt) used to say, “We manage.”

I usually walk with the aid of a walker, but use a travel scooter for longer jaunts or when I’m a bit weak (heat and exercise are the main culprits).  We keep the scooter in Laura’s car because the longer jaunts tend to be on weekends when we use her car almost exclusively.  The pool is one of those gray areas.  The walker is fine when we arrive, but the scooter offers more flexibility when we are at the pool and when we leave, depending on water temperature, air temperature, how long we stay and how I am shod (right shoe lift, left foot toe-up brace).  One evening this past August I met Laura at the pool.  I failed to notice that my scooter battery had been charging in the garage, so I had to use the walker at the pool—no problem.  The evening was lovely.  While the sky was not cloudless, there wasn’t the hint of rain in the air.  To the west, from where our weather usually arrives, nothing but blue sky.

Now when I use the scooter, I zip around to the far side of the pool by the swimming lanes.  When I use the walker, I enter the in the shallow end of pool on the near side, and walk/swim across to the lanes—anything to save steps.  The little children who hang around on the shallow-end steps where  I ease myself into the water are usually very good about giving me the space I need—even without parental admonition, which is usually quick in coming (nice people—another reason to like the MCP).  They are curious, but I don’t think they’re too badly traumatized by the sight of the fat old man with a walker holding onto the handrail and backing into the water.

Fast forward ten minutes.  Two laps into my swim, as I glide gracefully (in my mind anyhow) into the wall at the shallow end of the pool, a young lady in a lifeguard bathing suit directs me to get out of the pool.  The lightening warning has been triggered; thunder issues from the south through a still almost cloudless sky.  I tell her that I will traverse the shallow end of the pool to make my egress by the steps near the walker.  She offers to get the walker for me, but I demur.  It will overall be faster this way, and I certainly don’t want to take the time to explain why, even with the walker, I cannot really effectively walk without a five minute recuperation, drying my feet, and donning my orthopedic shoes with lift and brace, which are, of course, with the walker.  She is clearly nervous that I am now the last one in the water, but I fairly quickly wake my way to the steps and haul myself out of the water.

Is everything OK now?  Not really.  The assistant pool manager really wants us off the pool deck, NOW.  Our assistant pool manager is a very friendly, chatty physical education teacher.  He understands the danger of being out in the open whether the lightening in the area is coming from the west with rain, as it properly should, or it is atypically coming from the south with no accompanying precipitation at all.  He politely asks if they may carry me off the pool deck so I may complete my resting and dressing rituals in the relatively safer covered exit passageway that runs through the building housing the locker rooms/pool office.

I quickly agree.  After a brief remedial tutorial on the two-person arm carry, two strong young men safely lift and transport this slippery, wet, somewhat defective body the seventy five feet to a bench in the passageway.  While in transit I muse that this is really an appropriate time to be mortified at having to be toted like a sack of potatoes across the pool deck.  But I really wasn’t; this was just another event triggered by a disease that I didn’t ask for, and have no control over.  To be embarrassed by needing help politely offered and respectfully given would just be giving in to the MS.  That will never happen on my watch.  

Each incident is an adventure, both for me and for Laura following this parade with my walker and belongings in tow.  An adventure and a blog entry.

Wednesday, July 6, 2011

The Gimpy Athlete

In the words of Bob Marley, “Lord I’ve got to keep on moving.”  I could have quoted Kellie Pickler or Matthew Wilder, too, but Bob Marley is definitely cooler.

Of course with MS, one must pace oneself while moving.  There is nothing like exercising in the midday heat to exhaust you or bring on an exacerbation.  Try to keep on moving through that!  Why do we push ourselves beyond what we reasonably should be doing until our bodies put on the brakes?  Because once you slow down, once you give in and give up some physical activity, it is almost impossible to get it back.  We don’t shed any tears over this, we just know it’s true, and fight to put it off as long as possible.  That’s why there are so many of us walking unsafely without canes, using canes when we should be using walkers, and struggling with walkers when any reasonably intelligent person would be riding a scooter.  This is why our long-suffering spouses hover over us waiting with the first aid kit for the next traumatic spill.  Deal with it; stubbornness is a real virtue.

While most of the regulars at the gym (health club, fitness center, whatever) have gotten use to seeing me park my walker and climb precariously onto the cross trainer, I think everyone is less nervous seeing me using the new sitting cross trainer.  Is this giving up on the standing machine, making a sensible switch for safety, or a good choice that allows me to get more real exercise out of my workout?  I don’t know.  Do normal people waste mental energy on this kind of internal debate?  I don’t think so.

Now that it is summer, I don’t get my money’s worth out of my gym membership.  It is too nice to be indoors.  Of course outdoors can be problematic if it gets too hot, but if we get out early enough, or if the pool water remains around 80° F I can get by.  But keeping up with Laura remains a challenge.

Laura gets out of bed no later than 6:30 AM (we don’t set an alarm, it just happens) to start her day.  My children refer to this time of day as the ass-crack of dawn.  Her first order of business if the weather cooperates is a 40-minute walk/run/jog in the neighborhood.  Her criteria for cooperating weather have kept getting more liberal (about the only liberal aspect of her persona).  When her office moved this winter, and she lost access to the free employee exercise center, she discovered that with the right clothing she could handle a brisk walk at much colder temperatures than she had once thought possible.  I on the other hand mostly work at home, and could make good use of another hour and a half of sleep in the morning.  However, once it warms up enough to go out without gloves, I join her on her morning constitutional.

How, you might ask, does a gimp with a walker go out on a 40 minute walk?  I have a hand powered tricycle.  Picture a low-to-the ground recumbent configuration.  My feet go into brackets on either side of the front wheel.  The two back wheels are splayed slightly for stability.  Power comes from a pair of handles at shoulder level in front of where I sit (both hands move together, not alternating like bicycle pedals).  Steering is done by turning the front wheel with the arms and the legs.  The 21 gears give a wide range of speed vs. difficulty.  It provides a great upper body workout.  This hand-trike was not inexpensive, and I had great trepidation that I would not be able to use it when I finally bought it seven or eight years ago.  Words cannot convey the feeling of freedom and the exhilaration I feel moving with speed under my own power.  In retrospect, I have never spent money more wisely.  I have since purchased a hitch-mounted specialty carrier that allows us to transport the hand-trike and Laura’s bicycle (also not inexpensive).  Our wheels have followed us to local parks, Harrisburg, PA, and Prince Edward Island.

During the summer, a morning walk is just the start of my wife’s day.  She feels that morning exercise really puts her in the right frame of mind for a productive day at work, and takes pleasure in telling me, “I’m dragging your sorry ass out for a walk!”  After work, only thunderstorms keep her from swimming a kilometer at the Mountainside Community Pool.  She has been doing this for years.  The lane lines go in at 5:00 PM, and by 6:00 she is in the pool.  Last year I started joining her a few days a week.  I can no longer swim the distances I once enjoyed, but with leg floats I can usually manage 300-500 meters a few times a week.  When I join her after work the children tease me, “Coach has you doing two-a-days.”   I haven’t done two-a-days since football in high school.

When I was first diagnosed with MS 35 years ago, I was advised to cut down on my extracurricular activities and rest.  I tried.  It didn’t work for me then, and it is not working for me now.  Fatigue, shoulder pain, and a sore wrist on my mousing hand are mitigated by an afternoon nap, wrist brace and an occasional vigorous massage.  To quote Satchel Page, "Don't look back. Something might be gaining on you."

Westfield, NJ
July 6, 2011

Tuesday, March 1, 2011

The TEAM Annuity

The Mitzvah Squad is the brainchild of Laura Cohen.  Over the last ten years it has been one of the most successful fundraising teams for Walk MS in NJ.  Laura was encouraged to create a team by then NMSS staffer Doug Rouse.  At first she was reluctant, happy with her ability as a single fund raiser, but once she accepted the challenge, she has adopted new innovative ideas and team strategies each year.
Many benefits accrue to NMSS because of the team model.  Some of those benefits include:
·         Increased visibility of the total fundraising effort
·         Increased enthusiasm among team members and captains
·         Focus of teams on helping individuals rather than just the amorphous mass of MS sufferers
·         Team camaraderie on the walk  spreads to the larger group of walkers
·         Team (friendly) competition
Each of these ultimately leads to measurable increases in fund raising, both in the quality of individual donations, and the total number of donations.
Laura has found, however, that the most compelling benefit of the team as it grows from year to year is that each donation continues to multiply.  When someone decides to make an initial contribution to NMSS through The Mitzvah Squad, whether it be for $18, $100 or $500, that donation becomes an annuity that we can expect to multiply over the years.  Once an initial donation has been obtained, that person understands that they will be asked to donate each year.  Sometimes the amounts go down or a person opts out, but that is rare.  A $25 donation in 2001 has become a total of $400 over the last $10 years.  Now that’s an annuity!
Laura continues to nurture her team to keep the donors looking forward to the day in February when the will receive that year’s appeal.  Appeals go out by e-mail, letter and telephone.  The team is kept engaged by personally written thank-you postcards with the team picture, weekly updates to the Facebook Team Page, and personal contacts.  The goal is from year to year to make sure she leaves no money sitting on the table.

Saturday, February 12, 2011

Scooters on a Plane

We travel a bit, not as much as others, but enough to have learned our way around the airport.  We know that we generally do not have to wait in long lines, because there are separate procedures for people with wheelchairs or scooters.  Most airlines are happy to have you use the shorter business or first class lines at the ticket counter, and airport security has a special handling line for us as well.  We don’t wait for ½ hour in a long line at security, but make up for it in getting put back together (belt, shoes, etc.) after our personal (very) screening by polite, serious screeners looking for who-knows-what under the scooter seat.

When traveling with a scooter or personal wheelchair you have two choices:
1.      Check your mobility assistance through to your destination, and get a wheelchair ride from specially trained (I hope) airline/airport employees.
2.      Use your own mobility device right up to the door of the airplane, and gate-check your scooter or chair.

The putative advantage of the first alternative is that the device gets special handling.  The disadvantages are that 1) it takes time to go to the special handling baggage check-in, 2) you lose independent mobility while waiting at the gate, and 3) if you are not on a direct flight, you need to get a wheelchair assist at the intermediate airport as well.  But the wheelchair-assist staff are usually friendly and accommodating—be sure to give them a nice tip.  I have no statistics regarding scooter or chair damage using each mode of check-through.

The big advantages of gate-checking your scooter or chair is continuity of mobility.  You have your device until you get on the airplane, and it is usually waiting for you at the door when you get off the plane.  There are exceptions, especially on small planes or when you disembark to the tarmac, not an elevated gangway to the airport.  While always being the last one off the plane is a pain, it gives the staff time to get your hardware or wheelchair chauffer to the right place.

However, stuff happens.

Last November Laura and I travelled to the NMSS National Convention in Chicago.  Laura had been the year before and wanted me to accompany her this time.  She was a panelist at one of the breakout sessions on Social Networking as a Fund Raising Tool, and she needed some arm candy.  We should have taken it as an omen when the Continental gate staff were flummoxed by the idea that one could ride the scooter all the way to the plane before the baggage handlers stowed it on the plane.  They had never heard of such a thing, but a few phone calls and consultations seemed to relieve their angst.  No problem.

After an uneventful flight (the kind we like) we got an assist from a willing, tall fellow passenger to get our one carry-on bag (we travel light) down from the overhead compartment, and waited for the plane to empty.  I made my way to the front of the plane while Laura went to make sure the scooter was set up and operational.  It seemed OK, but when I tried to use it, it became clear that the lever that acts as a forward/backward control was separated from its fulcrum.  The control mechanism was cracked and not operational.  The crew helped us acquire a wheelchair ride and assisted with pushing the dead scooter to the baggage claim area where we met the Continental/United baggage claim trouble shooter on duty that shift, Ms. Bray.

After recording our basic information (name, address, flight, hat size), inspecting the damage and taking our statement, Ms. Bray was convinced that my scooter really was functioning before being committed to their tender care, and then not working when we arrived in The Windy City.  Her actions at that point are best summed up in an e-mail I sent to Continental once we returned home:
Subject: Baggage

This note is in commendation of the service provided by RoseAnn Bray at O'Hare airport.

On 11/10/2010 my travel scooter was damaged after being gate-checked at Newark Airport. Ms. Bray represented Continental very professionally arranging for a replacement scooter for our three day stay, and managing the timely repair of my scooter before we returned to Newark on 11/12. She took a personal interest in making all this happen, and kept us informed of progress at every step. The result is that I returned to Newark with a fully functional scooter.

Thank you Ms. Bray. Baggage management at O'Hare probably deserves some credit as well for having a polite, efficient, well-trained staff.

Aaron Cohen

I love people who take pride in doing their jobs well.  I love people who take personal responsibility for a task and see it through to completion.  And I love the surprised responses I get when I point out the job well done to someone who should know about it.  You can practically feel the writer of this response beaming at her computer as she typed:
Dear Mr. Cohen:

Thank you for your e-mail correspondence regarding the handling of your damaged assistive device.  It is nice to learn you received a service that was above and beyond your expectations, and Ms. Bray was able to prevent your vacation from being interrupted.  I thoroughly enjoyed reading your commendations.

One of Continental's primary goals is to have the highest standards of excellence exemplified through our service and employees.  We are very proud of our employees who reflect true concern for accommodating your individual needs.  In the service industry, nothing is more important than the impression we make with you, our customer. 

It is unusual when people take time to write about something good and I sincerely appreciate your thoughtfulness in doing so.  Your comments have been submitted into our corporate monthly Customer Care report so that your commendation will be shared with Ms. Bray and her supervisor.  We are proud to have received your acknowledgement of this outstanding performance.

Bettie Norval
Complaint Resolution Official (CRO)
Disability Specialist - Corporate Customer Care

The fact that good people doing their jobs with pride every day is good for the company, good for the economy, and good for the country.  No, I don’t think that is in any way hyperbole.  While this is in no way limited to the USA, it has always been part of our work ethic.  Where this attitude has flagged, it needs to be encouraged in every way possible in both the private and the public sectors.

We will be going to spend a weekend at Jazz Fest soon.  We will have one-stop flight arrangements through Atlanta.  I’m not sure if we will gate-check the scooter this time, or perhaps just check it through to New Orleans and get wheelchair assistance along the way.  We’ll see.

Aaron Cohen
12 February 2011

Thursday, January 13, 2011

Parking Bully

No posts in December? For shame Aaron! I'm getting behind in my story telling. Next week I think I'll write about my scooter repair in Chicago, but there is no time for that now. For today, just a little parking vignette.

"My apologies for bullying you out of that parking space," I say to the gentleman holding open the door to the gym. "I admit to becoming a bit aggressive at times."

"Think nothing of it," he replies. "I was just being lazy--glad to let you have it."

My gym (health club?), where I go every Sunday morning (I try to go at least one other day, but on Sunday it is a solid part of my routine) is on a busy county road. It is only two lanes, but cars proceed briskly. There is a parking lot with handicapped parking, of course, but there are four spaces on the street right in front of the entrance. Across the street there is also on-street parking and a large parking lot at the catering hall. When possible, I grab one of the on-street parking spaces which are closer than the handicapped spots in the parking lot. Even the on-street parking across the street saves a few steps, but I'm glad Laura has never witnessed me J-walking across North Avenue with my walker, stopping all the traffic.

Two Sundays ago I rounded the corner by the catering hall and saw that the furthest in-front, on-street parking space--the one just before the yellow-painted curb--was free. Good fortune! But as I turned left onto North Avenue, another car pulled up next to the yellow curb, and was about to back into my space. I quickly pulled up next to the space and slightly behind the poor driver who was probably just savoring his parking coup, and hung my blue hanging handicapped parking tag from my rear view mirror with a little flourish.

The other car quickly pulled out, ceding the prized parking space, and slipping into the caterers lot. He crossed the street just in time to hold the door open for me, and graciously receive my apology for being a bully.

I'm not sorry.