Posted tagged ‘ALS’

Fate, coincidence, and an ALS clinic

August 27, 2015

by Andrea Powell, HPCCR Marketing Manager

Wes and sandra leconte

Sandra and Wes Bobbitt, September 2011, two months after diagnosis

There were two patients that day.  I could have been assigned to either one but (as far as I’m concerned) fate intervened.  And that’s how I met Wes and Sandra Bobbitt.

A few weeks ago, my coworker Heather, an HPCCR Education & Resource Manager, asked if I would like to join her at the ALS clinic in Charlotte to shadow a patient.  As I have a slight connection to ALS (which I will explain later), I quickly agreed.  We met there early on a Friday morning, both of us a little nervous and not knowing what to expect. Which is probably a good thing.  Going in blindly, without preconceived notions, is like giving an artist a blank canvas — you have no idea what the final outcome will be, and while the process to get there will be layered and complicated, you know it will be genuinely real.  That’s how it was for me, anyway.

Even though my emotions were admittedly all over the place, it was an unforgettable experience.  The day was both heartbreaking and heartwarming, with a little bit of massive coincidence thrown in for good measure.  And I was only there for four hours.

Two patients had agreed to be shadowed.  One of the patients was under the care of HPCCR and the other was under the care of a different hospice.  Heather, whose job is to stay current with the competition, went with the patient not under our care.  I  joined Wes Bobbitt and his wife, Sandra, for the first half of what would prove to be a very long day for them, indeed.

The ALS clinic is a brilliant concept.  I’d never really thought about it, but it’s very daunting for patients with this disease to get out and about.  So twice a quarter, the Carolinas Neuromuscular Disease/ALS-MDA Center holds a day-long clinic where patients can see the entire ALS team at once.  Throughout the day, they’ll meet with the nurse, doctor, pulmonologist, social worker, occupational therapist, speech therapist, the person who adjusts their wheelchair, the person who will talk to them about insurance, the person who will help them with augmentative communications (ways to communicate other than speaking), and a nutritionist.  They will arrive at 8am and can potentially be there until 4 or 5pm.  That’s a very exhausting day, but you’re packing in over a month’s worth of appointments.

“My” patient, Wes Bobbitt, was diagnosed with ALS in July 2011. Wheelchair bound, his disease has progressed to the point where he can no longer move his legs, breathe on his own, or swallow food or liquids.  He has limited movement with his arms and neck, but can still nod his head and use his hands to communicate (in a limited capacity) with an iPad.  Nevertheless Wes is cheerful, friendly, and maintains a great sense of humor.  Not to mention, he’s a very good sport for allowing a complete stranger to shadow him to multiple meetings with medical professionals who are discussing very personal issues.

I watched as they weighed Wes and took his vitals.  I listened as the nurse asked his wife, Sandra, about his symptoms and how he’s been doing since his last visit.  I joined them as they visited the ALS doctor, the social worker, and the pulmonologist.  I hung out with them in the clinic lobby (where they talked to the wheelchair guru about the tweaks needed to make Wes more comfortable) as they waited for their turn to visit each of these individuals.  I talked to Sandra and asked questions.  I observed.  And I learned.

ALS is a terrible disease.  It robs the body’s ability to function yet leaves the mind intact.  ALS moves slowly with some patients and like a rocket with others.  The patient that my colleague Heather followed was diagnosed over ten years ago and is still talking and breathing on his own.  Wesley was unable to eat or drink after just three years.

One of the most profound and tragic symptoms of the disease, in my opinion, is the loss of communication between patient and loved ones.  There’s an inherent change in the relationship dynamic simply because it becomes so much harder to “talk”.  Wesley must depend solely on his iPad to communicate and as his body grows weaker, his ability to use the device slows as well.  And now, given the effort it takes to type letters onto the screen, Wes is relegated to communicating only his most basic needs — requests to move his head position, to take his medications, or to let Sandra know whether he is too warm or cold.  I asked Sandra if they have actual “conversations” anymore.  She replied that she mostly talks and he listens, a substantial and heartbreaking contrast, I would imagine, from when their marriage began 35 years ago.

Sandra has kept her full-time job; she acknowledges that staying busy helps her not get too overwhelmed by stress.  They need caregivers in place, though, to cover the hours when Sandra is not at home.  When Wes first started needing help, friends from church would come over, bring a meal, and watch a movie with him.  As his disease progressed, however, Sandra realized they needed nurses.  They also decided to bring in hospice.

Unlike some families, the Bobbitts were not scared of the hospice concept and were not resistant when the social worker at the clinic first broached the topic.  Sandra’s aunt was under hospice care for two years and her mother was also very briefly under hospice care before she died.  So Sandra and Wes understand the value that the hospice care team brings to the patient and the patient’s family.  Indeed, the HPCCR care team has been an immense help to them since Wes came under care in February.  Their nurse comes once a week and their nursing assistant comes twice a week to help with bathing and other tasks.  They also receive regular visits from a social worker, and the hospice physician comes once a month as well.  All of Wes’ medications are now provided through hospice; that alone is a major convenience.

At the same time, Wes and Sandra are under no illusions; they know what the future will eventually bring.  Advance directives are in place and they are even working with a writer to help with Wes’ obituary.  But in the meantime, they are making the most of their time together, and with their two children.  Their daughter is getting married this fall and Wes plans to “walk” her down the aisle.  A huge fan of Phish, Wes is currently trying to talk his daughter into a father-daughter dance to one of the bands’ songs.  (I told you he has a sense of humor.  Thinking his daughter will go along with this plan also speaks to his optimism!)

Now we come to my connection to this disease.  Unfortunately, my sister’s father-in-law, Roger, passed away in January from Primary Lateral Sclerosis (PLS), a very slow-moving form of ALS.  Roger lived with it for over 25 years.  I knew him for the last ten of those years and I saw how difficult it was — for him, his wife, his children, and his friends.  Roger had great support, though, from some amazing caregivers, from friends, and from his church.  The very church, in fact, where Wes and Sandra’s daughter will be getting married this fall.  That was the first coincidence I uncovered.  Turns out Wes and Sandra knew Roger and are still friends with Roger’s wife, Dianne.  The talented writer who helped write Roger’s obituary is the same man helping Wes and Sandra.  He’s got quite the job ahead of him because Wes has had a full life.

The photo of my nephew's baptism taken by Wes

The photo of my nephew’s baptism taken by Wes at Myers Park United Methodist Church

By trade, Wes is a photographer.  He worked for years at the Charlotte Observer, but is also an accomplished travel photographer.  And then there are the weddings, corporate events, and church pageants he attended, the fruits of which round out his portfolio.  The walls of his church, Myers Park United Methodist, are lined with his beautiful work.  There’s one piece in particular on those walls, though, that is special to my family.  In one final fantastic coincidence, Wes was the photographer at my nephew’s baptism over eight years ago.  He took a gorgeous photo of my infant nephew staring into the eyes of Dr. Howell, the senior pastor of the church.  This cherished image hangs in Myers Park United Methodist Church just as it does in my sister’s house — it’s one of the first photos you see, in fact, as you walk through her front door.

There were two patients that day — for me and my coworker.  But there were many, many more patients at the ALS clinic that Friday morning.  I was struck by the camaraderie among those families; all in various stages parceled out by this unforgiving disease, but living through it together, supporting each other.  I was struck by Sandra and Wes Bobbitt, strong in the face of challenge, living life with optimism and grace.  And then I think of my nephew’s face, the innocence in it on his christening day, perfectly captured by Wes in that photograph.  It made me realize something.  We start this life out, never knowing where we’ll be led and what obstacles will lay in our path.  But our attitude, how we face those obstacles, determines our happiness.  The families I saw that day had chosen to pour their energy into living their lives the best way they know how.

It’s a humbling lesson that I could not have learned without fate and a little bit of coincidence.

“I love you. Remember me.”

April 15, 2011

by Lynda Carlberg, HPCCR Volunteer Services Coordinator

I was blessed to help her have a voice.

When I first met Sue, I had been assigned as her hospice volunteer and she was working on a quilt.  She loved quilting and since she had been diagnosed with ALS – more commonly referred to as Lou Gehrig’s disease – she was becoming weaker.  Yet she wanted to complete these two quilts to leave as a memory for her granddaughters.  She was able to complete the quilt tops but as time passed and the disease took its toll, Sue lost the use of her body and voice.  The project lay unfinished, folded in plastic bags.  So I asked if she would trust me to seek out someone to turn the tops into the quilts she envisioned for her granddaughters.

After numerous calls, I was connected to a quilting group called “The Piece-Makers”.  I explained the nature of the large, time sensitive project to them.  They spread the word, and as it turned out, there were more women to help than blocks left to complete on the quilts.  They transformed themselves into what I affectionately call “The Peace-Makers”.  I had the joy of delivering two beautiful hand stitched quilts to Sue just days before she died. 

Sue was weak and unable to speak.  But with those quilts she was able to say to her granddaughters, “I love you.  Remember me.”

As we near the end of National Volunteer Week, HPCCR would like to recognize each and every person who devotes their time and talents to our organization.  Our volunteers are instrumental to the work we do every day.  Without them, we simply could not exist.  Thank you, volunteers.  Our gratitude has no boundaries.