Roller Coaster

It is not just gimps who have found ourselves, at times, firmly in the grip of the medical establishment. As much research as we might do, we eventually have to put ourselves in the hands of a trusted team of professionals, and follow an established or experimental treatment protocol.

The following story is a mash-up of excursions into the medical establishment, but all based on a real incident on a real roller coaster.

A very short story. Enjoy.

Roller Coaster

Aaron Cohen 11-1-14

Clackety clackety clackety . . .

The roller coaster car grabs the chain and starts the long climb to the apex of the twisting track that will yield two minutes of terror-laced thrill on our tortured route back to the starting point. We are committed now. No escape until the car brakes to a stop.

Clackety clackety clackety . . .

The echoes of that long-ago ride bounce off the insides of my skull. I’m sitting on the table. The doctor has just left the examining room, and invited me to get dressed. Everything has been explained. Tomorrow’s procedure. The treatments over the next few months. The ancillary and follow-up therapies. The side effects. The odds (or potential outcomes based on others’ experiences). The progress checkpoints and tests along the way.

Clackety clackety clackety . . .

This is no thrill ride, nor will it be over in two minutes, but the path is set and the car is proceeding inexorably up the highly superior US medical infrastructure.

Many years ago, when the children were quite small, we took a short vacation trip to Colonial Williamsburg, Jamestown and Busch Gardens.  My wife does not like roller coasters, and the children were too small, but they indulged my need to ride the big coaster at Busch Gardens. It was beautiful. The first drop was a steep dive right over the water of the lake. I waited in line for more than 20 minutes, and as luck would have it ended up in the front seat of the car. My seatmate was a pretty young woman several years my junior who seemed to be there with a group of friends.

Clackety clackety clackety

As we approached the release point high over the lake she turned to me and said, “It really helps if you scream.”

She was right!

Elul Project - Laura

Introducing guest blogger Laura Abrahams Cohen, who also contributed an essay about thankfulness and walking to our synagogue's Elul Project (see previous entry for my contribution). Enjoy - Aaron

Elul 2014-5775

                                   

I am thankful for the blessing of good health at the start of the New Year!  My adventure started over a year ago with some hip pain. Not quite ignoring the discomfort, I began Zumba exercise dance classes in September 2013.  After all, my outdoor pool had just closed on Labor Day and one DOES need to exercise.  Surprising myself, I liked the music, which I’ll admit is different from classic rock’n’roll and the Grateful Dead which form the sound track for my life.  Soon I needed to see the orthopedic doctor again because the pain began to become alarming.

We needed to pin down the real problem which involved navigating the healthcare system. I am thankful to have health insurance through my employer.  By November of 2014 I got the official word on the results from the MRI—hip arthritis.  It had progressed rather rapidly from a year earlier when the x-ray showed not much of anything.

By this point I was looking for solutions to the mounting discomfort.  Temporary help came from a cortisone injection into the joint which provided exactly five weeks of relief.  No repeats of that relief were possible.  By early February the words “hip replacement surgery” were spoken. Oh my, this would take some getting used to. Zumba went on hold for a while.

The months from February to May 2014 brought acute pain and real disability.  Driving my car resulted in my not being able to stand up and walk when stepping out of the car. My leg from knee to hip completely cramped up (to protect the deteriorating hip joint).  I resorted to keeping a hard folding chair in the back of my car.  I would hobble to the back of the car, take out the chair, sit down and shift around in an effort to be able to stand up again and walk.  Usually it worked, but sometimes it did not. My colleagues at work began to see me have trouble walking and sympathetically asked if I was OK.

By late February I scheduled the surgery.  I probably should have scheduled it for sooner but we had three happy occasions coming up in April and May which I didn’t want to miss. The date was set for June 3 so that we could celebrate at a cousin’s wedding in Austin; travel again to my uncle’s 90^th birthday in Ottawa-- at which he surprised everyone present including his children by turning the already happy occasion into his wedding to his long-time girlfriend; and celebrate with our son Jonathan and his fiancée Alyssa at their engagement party.

At WalkMS in April, the fundraising and awareness project of my team the Mitzvah Squad for the benefit of the National Multiple Sclerosis Society there would be NO WAY I could walk the three mile route. I borrowed a scooter from Aaron to cover the course.

I was worried about the upcoming surgery—no joke.  I tend to be easygoing-- taking things as they come.  I’m a veteran of three c-sections and gall bladder removal.  But this was BIG, and it involved rehabilitation and physical therapy as well as the time off from work to accomplish these things.  On the morning of my total hip replacement surgery I couldn't walk and had to ask for a wheelchair half way down a long hallway.

My surgeon promised me that when I stood up from the surgery I would not have the pain that plagued me for months leading up to the repair.  He is right. The recovery is amazing and miraculous. He and his staff were helpful as were the physical therapists in getting me through the adventure.

Prior to about 40 years ago, hip replacement was somewhat experimental. Since the 1970s the techniques that are now in use were developed and are quite successful.  The first U.S. hip replacements began only in 1940.

I got advice and encouragement from growing list of friends who have either had joint replacement surgery or are close to someone who has had it.  Everyone spoke of the terrific results and said they wished that they had done it sooner!

How fortunate I am to be living in 2014/5775 and to have access to this repair. I often think about the devastating pain that all the humans who have had the same problem as I suffered from in the history of humanity until just 40 or so years ago. I think of the majority of humanity today with no access to our amazing first world medical system. 

Especially at this time of the New Year I do not take this blessing for granted.  I’m working on my rehab with daily walking, swimming and physical therapy exercises.  I am hugely grateful to have recovered from this problem. I am thankful for my new beginning with my pain-free leg. I’m even glad to return to my work and my regular routine after a well-timed early-summer outdoor-pool-season rehab.  I’m looking forward to returning to those noisy fun Zumba classes.

Laura Cohen

Elul Project - Walking - A Memory of My Dad

For the past several years my Rabbi (Ben Goldstein - Temple Beth-El Mekor Chayim) has asked congregants to contribute essays to an Elul Project as a way of preparing for the High Holy Days. A booklet is compiled, and shared with the congregation on Rosh Hashanah. I finally broke down and wrote one this year. My resolution is to not let it be another year before I contribute to this blog again.

Elul Project 2014

Aaron Cohen

September 4, 2014

Walking.

Walking to synagogue on the High Holidays.

Walking to synagogue on the High Holidays, with my daddy.

I must have been three and a half. My baby brother had been born in March and would come to synagogue later with Mom, but Dad would leave earlier and walk the three tenths of a mile to Temple Israel Center in White Plains, NY. I was deemed “big” enough to walk with him, and sit with him in services until babysitting started.

After breakfast Mom dressed me in my shul clothes. It had to be after breakfast because we didn’t want to spill on new clothes. I don’t remember much about the outfit except that the good gray wool pants seemed terribly scratchy, and I got to wear a clip-on tie. Then we walked up to Old Mamaroneck Road, and over to the Temple. We passed houses, and woods that would become houses in later years.

When we got to the Temple we entered through the doors by the chapel, and went up a half flight of stairs to a landing where Dad picked up a small envelope from a table with hundreds of seemingly identical small envelopes. This envelope contained two tickets on the center aisle in row HH. Then up another half flight to the sanctuary. Dad sat on the aisle—the same seat he would occupy on the high holidays for the next 39 years. I sat in my Mom’s seat, and politely said hello to the people in the neighboring seats who had held that real estate for many years. I don’t actually remember being polite, but I know that Dad would have it no other way.

Grandma Madeline showed up shortly after we got there. She had the next two seats in the aisle. One for her, and one that Grandpa Ben used to sit in, but would go unoccupied for the first time this year. I’m pretty sure Grandma Sadye sat there on the second day of Rosh Hashanah. She was a member of the Hebrew Institute on Greenridge Avenue, but her son and grandchildren were here.

When Mom and Larry arrived I went to babysitting. It was comfortable and familiar; held in the room where I went to nursery school, but different because Mrs. Marish wasn’t there.

Three times a year for the next ten years I walked to shul with my daddy on the high holidays. We then moved too far away to walk, something that I didn’t think about at the time.

I miss it.

Walking.

Walking to synagogue on the high holidays.

Walking to synagogue on the high holidays, holding my daddy’s hand.

Maybe he carried me part of the way. Maybe he still does.

Mel Cohen in the Navy, Part 1

Wow, I have been away from this blog far too long.It's not that we haven't traveled and had some interesting experiences, it's just that I haven't had the desire to write. Now that I have that desire again, maybe I'll write about that as well. In the meantime, here are some stories that I remember my dad telling us from his time in the Navy during World War II.

Mel Cohen in the Navy, Part 1

Like most young men in the early 1940s my father, Melvin Cohen, enlisted in the armed forces for World War II. He ended up in the Navy and graduated as a midshipman, 90 day wonder, after attending the Navy’s Officer candidate training school that was held at Union College in Schenectady New York.

While sitting around the dining room table after a holiday meal or family gathering we could sometimes get him to talk about his days in the Navy. Sometimes it took some cajoling; he was often reluctant to talk about it. He was a good storyteller. I only hope that I can re-create accurately some of the stories he told us.

Dad’s assignment in the Navy after graduation as an Ensign was as second in command on a Landing Craft Tank (LCT). He earned a field promotion to first Lieutenant and became the captain of the LCT several days before D-Day when his commanding officer was sidelined with acute appendicitis and had to be evacuated. More about that later.

One of his favorite stories was about a gunnery mate on his ship who never had to touch a gun. In his civilian life this man was a pastry chef. Working miracles in the galley with sparse supplies, shortage of many staples, and the supposedly nutritious but quite boring realities of the Navy mess at sea was all that was necessary to keep this treasured soul ensconced within his natural element. Dad told us that the creampuffs his gunnery mate with able to create without access to real eggs or sugar not only earned accolades around the fleet, but were the linchpin of many barter transactions dad engaged in as part of the normal business of day-to-day survival in the Navy at sea.

Not all the stories were about pastry; some of it was pretty harrowing. The role of an LCT was to bring heavy equipment ashore, and as such had a pivotal role to play in the D-Day invasion. Dad participated in the first wave ashore at Omaha Beach. As a very green ship commander his survival and the survival of his crew depended on both his skill and ability, and a lot of good luck. Five LCTs were part of his group deploying heavy equipment onto Omaha Beach. Five went in, and only one came out. On his next trip into the beach, five LCTs went in and two came out – his ship, and the disabled LCT he was towing. During one of the sorties he was up in a crow’s nest trying to get a better handle on what was going on and where he should be going. Shortly after he came down from the crow’s nest he happened to look up to where he had been and saw that the crow’s nest had been destroyed by enemy fire.

I’m sure that there are details about the events of D-Day that dad rarely thought about, and never spoke about, certainly to us. Needless to say, close calls were the norm rather than the exception.

The full import of some events didn’t become obvious for many years. Dad told us about one loading or unloading exercise during which a large block and tackle swung out of control hitting him in the back and knocking him to the ground. He was examined by the Navy doctors who poked and prodded and banged on his spine with rubber hammers. They declared him fit to return to duty and he shrugged off the pain and discomfort as young men are wont to do. Roll forward 25 years. Dad is bereft of commuting by train due to a transit strike. He is suffering long hours in a carpool and the loss of income from his twice daily card games on the train. He develops terrible back pain, so bad he goes to see the doctor who sends him to a specialist. The specialist takes x-rays and asks dad when he fractured his spine. After showing dad the x-ray, and convincing him that one of his vertebrae really had been fractured at some point, the only incident that he could come up with where that might have happened was the incident with the block and tackle during his days in the Navy. Luckily, the end of the transit strike put an end to the worst of his pain. It turns out that in time of war, Navy medicine could be as spotty as the Navy food.

One of my favorite stories also had consequences beyond dad’s time in the Navy. A call went out to the fleet that three men on the flagship required a fourth for a game of bridge. Dad was always an eager and ardent card player, and never one to turn down the opportunity to play a hand of bridge. He sent word to the flagship that he was available, and a launch was sent to bring him over to the game. When he walked into the room and was introduced to the other players he was a bit intimidated by the quantity of ribbons, braids and scrambled egg on their uniforms. Suspecting a fairly high-stakes game he told them that he did not have a lot of cash with him. They told him not to worry about that. They really needed him as a fourth to allow them to play. They played round-robin. That means that dad played a rubber with each of the other players as his partner. As luck (and in his mind skill) would have it, he won with each of the other players with whom he partnered. When they totaled up the points he was far and away the big winner for the day. It turns out that they were playing for a dollar a point – very high stakes for a junior officer. He walked away from that game with a large roll of cash. Knowing himself, and knowing that if he kept the cash he would find some way of spending it, at the next opportunity he took the money and purchased a diamond. He sent that diamond home to his mother for safekeeping. Several years later that diamond was to become the centerpiece of my mother’s engagement ring.

That’s all for now. There are other stories. Some stories have a lot of detail attached, others not so much. There’s the story of getting lost in Paris during the blackout. He told us why he won’t eat Brussels sprouts. We know about a girlfriend, or fiancée, in France, but know very few of the details of that story. I’m sure the stories are not unique. Thousands of men in the greatest generation participated in World War II and there are many stories for each of them. But these were our dad’s stories and they gave us some insight into his early life and experiences that made him the man we loved as our dad.

Aaron Cohen

Garwood, NJ

28 September 2013

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.

  

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

Strategies - An Evening with Networking Masters

My presentation at this Networking Event in support of the National Multiple Sclerosis Society:

https://www.facebook.com/video/video.php?v=10150186207604641&oid=196963903665153&comments