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Living with ALS [Lou Gehrig's Disease] - Meet Scott and Molly Poole

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My guests today are Scott and Molly Poole. Welcome to OpEdNews. Although the two of you worked a block apart in Lancaster, PA, you had never met before you were fixed up in September of 2004. It soon became clear that you were made for each other and you decided to make it permanent. What made you so sure?



Molly: While Scott's thinking, I know one of the first "signs" for me was our first date.  We were set up on a blind date for my brother's wedding. He was very attentive to whatever I might need and talking with him was soooo easy!  We spent most of the evening just talking and getting to know each other and before we knew it, they were turning on the lights and last call was long gone.  When he dropped me off at my apartment, he told me he'd had a lovely evening and gave me a kiss on the cheek that made my knees buckle.

One week later, on our first official "date" date, while we were at dinner, I was saying something and he reached out and put his hand on mine, and a little voice in my head said - you're going to marry this man!

We found we had many similar interests and life experiences, shared the same demented sense of humor and would end up laughing hysterically till we couldn't breathe.  While we each had full lives, activities and many friends, we both felt we'd found our "missing piece." 

Scott is having some computer trouble, so I'm going to ask him to spell out things to me. They may be a bit choppy, but he'll do his best to convey his thoughts.

Scott: Immediate sense of attraction, shared humor, interests, love of architecture, history, preference for quiet nights at home. [Molly: Scott just typed something racy that I'll not repeat here! While Scott is typing to the nurse, I will mention that tomorrow is our fifth wedding anniversary! The flowers he sent today are beautiful, as he is. Again, Scott is typing something that is self-deprecating, has us rolling with laughter, but again - unprintable!]

Happy anniversary! So you had a storybook blind date and things progressed smoothly from there.  At what point did you decide to tie the knot and make it official? It doesn't sound as if one of you dragged the other to the altar!  

Molly: Since we had both been in relationships that hadn't worked, we did not want to rush into anything, while at the same time knew we were no spring chickens and both wanted children. It felt so natural to be together. We were wrapped up in spending time together, enjoying the seasons change from autumn through spring and one night in May, we were down in Baltimore for the weekend. We were eating dinner before the O's game and I looked over at Scott's gorgeous eyes and said, "I could look into these eyes forever." At which point, he became slightly nervous, and said, "About that, I have something to say to you and I don't know if I should say it bluntly, or round about."  

With my heart in my throat, I said, "Blunt is good." All the while thinking - I can't believe this guy's about to break up with me! Before the game! Before the rest of the weekend! And braced myself for the 'It's not you, it's me, let's just be friends' speech..... And Scott said, "If I were to buy a piece of jewelry for you, would you like to be surprised, or do you want to come along?"  Now completely confused, I said, "You're going to have to be more blunt than that!" And then he said, "When I buy a diamond, do you want me to surprise you with it or do you want to be along to choose it?" Now, very much relieved, I said, "Why can't we have the best of both worlds?  We can pick out a ring together, and than you can surprise me when you give it to me!"  (I loooove the anticipation of waiting for gifts.) So that's what we did.

Scott: Realized she was the one, and asked awkward preliminary question before Orioles game.  Popped question in August on what I considered to be a nice wooded road, but reminded Molly of Deliverance. 

Molly: In my defense, we were parked at the end of a driveway posted all over with no trespassing signs in an isolated area by the river - I thought - great - I'm going to get engaged and shot in the same evening!  Needless to say, I told him yes!

I can picture it perfectly! How did things go from there? [Did the Orioles win?]

Molly: To tell the truth, neither one of us remembers if they won or not!  We had a wonderful weekend. We debated staying the extra night since it was only Saturday, but missed the kitties and felt we had all the time in the world to return.  Sadly, that was not to be.

Scott:  Was happy that the first step had been taken, looking forward to future.

Molly: Scott proposed on the hottest night of the summer!  I suspected something was up, but couldn't tell if it was nervousness, or the 98% humidity that was making Scott perspire so much! Everything after the engagement was a combo of whirlwind and normal.  We continued our First Friday date routine, house stuff and snugglefests, while choosing all the wedding things we needed to do in the following months.  I originally told Scott I thought it would be neat for me to ride down the aisle in white jeans and a sparkly white top.  I'd always wanted an outdoor wedding.  I got the outdoor wedding, but both Scott and Dad said a big "whoa" to the horse! But the bridesmaids and I did arrive in a carriage!  

Scott convinced me to go the dress route, and I must admit, he was right - the whole wedding party looked fab.  We did not want a formal organized "you will now sit, you will now stand" type of wedding.  We wanted a great party that happened to have a wedding at the beginning and that's what we did!

Scott: Planned everything ourselves, busily gathering  wine, glass hurricanes for candles,  measuring the barn (to see how to place the tables for maximum seating), painting the restrooms.



Molly: We were married at Landis Valley Museum, a state museum originally put together by two brothers on their farm to show how people used to live as they watched the 20th century unfolding in all its newness.

Scott: Hoping for good weather!

Molly: I chose Derby Day to be married as we'd always had good weather where we live on that day, and also because it was already a special day for me since seeing it for the first time in '73 at age 10 and watching Secretariat come thundering down the homestretch.  We had several calls of dismay from my horsey friends after the invitations went out - Do you realize you're walking down the aisle at post time?! - I assured them we were taping the Derby and playing it on a big screen at the reception.  I haven't missed a Derby since '73 and was not about to start!

Scott:Trouble with finding invitations that we liked.  

Molly: We ended up finding an online site where we could put together something simple in the colors we wanted.  Scott was a wonderful wedding planner, bringing to life the ideas we had for our wedding.  Looking back, we both feel that what was thought to be a torn rotator cuff that started to trouble Scott a week before the wedding was actually the physical start of Scott's ALS.

Our wedding day was perfect, and as Scott has said many times, the happiest day of his life. For me, it's a tie between that day and the next, as I was still walking on air. 

So what changed after that and how did you know what was happening?

Molly: We were married May 6, 2006, and less than two months later, I saw the muscles in Scott's upper arm moving in a funny way.  We thought he'd torn his rotator cuff the week before the wedding and postponed the honeymoon for a few weeks as a result.  We now think that was a warning shot across the bow so to speak.  My uncle had ALS back in the '80s, and described some of the first symptoms as, "The muscles in my arm were moving on their own, without my trying to make them."  As soon as I saw that, I knew.  I hated that I knew, and prayed and prayed that I was wrong, but most of that summer was spent with that Godawful feeling in the pit of my stomach that the bottom was about to drop out.  

We were so happy, and both of us were looking forward with such excitement to our future together.  We both wanted kids and were looking forward to all the things that they entailed.  Scott wanted so much to be able to play ball with his children.  He loved letting the neighbor kids play in our yard, making two small back yards into a larger one to run in.  It was so much fun to watch and join in their games as they whirled and spun around the yard, giggles and shrieks echoing into the trees.  I think that is one of the biggest heartaches for Scott.

Scott's muscle movement in his arm seemed to stop and I was relieved (not knowing that it just meant that those nerves had died and could no longer twitch in their death fight). We had a great week at the beach, writing wedding thank yous and soaking up the sun and time with friends and family that were down at the same time.  We had one more time at the beach together in summer of '07, but by then we were six months into the diagnosis and knew it was probably our last time at the beach together.  At least for a long time.  We still believe the cure is coming and we will be able to walk the boards again and play in the waves.

But, as our first year of married life progressed, so did the monster.  The twitches started again, in different places now.  Scott had moments of unexplainable weakness doing normal things and became frightened enough to go to the doctor.  After a month or two of tests, they still had nothing definitive.  We had many days of relative normalcy with occasional sightings of the monster, popping up out of the blue, like the shark in Jaws.

Then, right before the holidays, Scott couldn't lift his right arm more than shoulder level, and the twitches were back with a vengeance. Shortly after the new year, we made an appointment at Hershey Medical Center and drove there with hearts pounding.  They couldn't tell us anything definite and scheduled a spinal tap.  They said there was a 15% that Scott had something else.  Not great.

Scott: First noticed on honeymoon.  Was out on a two-person catamaran and could not pull as hard as I used to with right arm.  Assumed it was from the torn rotator cuff diagnosis in April.  

Molly: Since 2002, Scott had been "ritchy-rootchy" in his right shoulder and back when sitting in one position for too long, rather like restless leg syndrome.  Scott said recently that he wonders if that might have been early symptoms of the disease.  (Scott says to use the word squirmy as he thinks "ritchy-rootchy' might be a Pennsylvania Dutch word that people might not know.)  Also, Scott says he noticed he was having problems pulling hard enough to get the lawnmower started and lifting pumpkins onto the counter at Halloween. Scott could only lift the pumpkin a foot or two off the ground and then his arm wouldn't go any higher.  He also noticed, by that point, he was starting to have trouble gripping the pumpkin stem as well as lifting it. Scott says he lost fine motor skills in fingers and had limited range of motion with [his] right arm.  Started having trouble with buttoning clothing, using keys, writing, combing his hair, using utensils, and brushing his teeth during the winter of 2006-2007.  

Molly, you knew what was going on because you'd seen the progression of your uncle's case of ALS.  At what point did you share your suspicions with Scott? Were you afraid to?

Molly: I told Scott my fears as soon as I saw his arm muscles moving the way they were.  We were getting dressed one weekend, and I looked over at Scott (he's very easy on the eyes) and noticed the strange movement.  It looked like a large bug was under his skin, crawling around. I stood there watching for a minute or so, and then asked Scott if he was trying to move his arm that way.  When he answered, "What way?" I went cold and felt like I'd been punched in the stomach. 

I knew I had to tell my fears to Scott right then and there.  If it was ALS, (and I so hoped it wasn't) we had no time to waste.  My uncle progressed quickly, but survived longer than they predicted by sheer will to live.  So, I said to Scott, "I think you have Lou Gehrig's."  When he said, "What's that?" my heart sank even further.  I told him briefly about ALS, but didn't delve into much detail.  Like most guys, when their ladies tell them something they don't want to hear, he brushed it off and dropped the subject. As the twitches continued on and off, I kept telling him he needed to see a doctor.  He did go to see his regular doctor, but the doctor didn't see what I saw and pooh poohed my fears.

By mid autumn, Scott became convinced something was wrong and went to a neurologist.  The test results came back just after Thanksgiving, but they were inconclusive.  That, at least, bought us the holidays. Our first as a married couple and our last as a normal holiday.  By New Year's, we had set an appointment at Hershey Medical Center for the first week in January.  By Valentine's, we had the diagnosis, and Scott was showing definite signs of the illness.  The farm museum where we'd been married just months before was having a candlelight Valentine's dinner in its old roadside hotel, with everyone being taken up to the building through the snow in a horse-drawn wagon. I still have the rose they gave the women at dinner.  That was our last real Valentine's Day.  The next year, in 2008, Scott had a new stomach peg tube and was getting his meals through that and didn't feel like going out anywhere.

What a huge change in such a short period of time, Molly! So, how does a person with ALS make a living, pay the bills? How does a spouse work when so much care is necessary?

Scott: Worked 15 months after ALS diagnosis and then disability income.

Molly: Those were the same questions we had when Scott got the formal diagnosis, February 7, 2007.  Hershey had no answers.  ALS progresses so differently in each person that it's nearly impossible to give concrete answers.  It really leaves you in a sort of free fall of anxiety.  When Scott asked how long he had to live, they said their patients tended to fall on a bell curve - lasting anywhere from two to six years, but they said they had patients breaking the six year mark every day, and some that were working on 12 years. My mother had a friend who lived 25 years after diagnosis and worked most of that time.  My uncle lived a year and a half.   

About the only definite thing they could tell us was that a positive attitude seemed to make a difference in surviving longer.

In the midst of free fall, I remembered Elizabeth Glazer, Paul Michael Glazer's (of Starsky & Hutch) wife.  She became infected with the HIV virus after a blood transfusion in the '80s or early "90s.  Rather than just lie down and be the victim, she held celebrity fundraisers for AIDS research and awareness for years before her death.  So, since Scott had this "orphan disease" as they called it, we decided to have our own fundraiser for research.  But first, we went on a cruise.  Royal Caribbean became our womb of safety, at least for a week that March.  They treat you so well to begin with, and after our waiter found out about Scott's illness, was amazingly adept at serving Scott his dinner and then whipping a knife and fork out of his pocket to cut Scott's food for him so fast I wasn't sure exactly what he did.  Scott already had impaired arm movement and this helped him save energy to eat, not waste it cutting.

Life was proceeding somewhat "normally," although Scott already needed help buttoning his shirts on the cruise. We both continued working our respective jobs.  Scott was in-house legal counsel for a local bank, and most of his work was primarily answering legal questions over the phone and through email.  Over the course of 2007, both his speech and typing ability deteriorated.  It seems if your symptoms start above the waist, the disease progresses much more quickly than if it starts lower.  Four months before Scott's diagnosis, my cousin's brother in law was diagnosed and he's just now getting to the point where he's having to think about stopping work. 

 

I can't speak for Scott, but with every little progression and change in how we did things, I decided to adopt the outlook of - this is just how we live now.  It did get progressively harder, but the more "normal" we could keep it made it a bit less scary.  Also, I have always had a strong gut feeling that the cure will come in time for Scott.  Scott has said his reason to live is the thought of our future together.  That keeps him going, and me too.

In short, PALS [People with ALS] work and pay the bills pretty much just like the rest of us, but with a lot more worry about the future and what it holds. It hits everyone so differently, but they all end up at the same point, having to decide yes or no on a feeding tube for their stomach, and yes or no to go on a vent to breathe.  Sadly, for many, the decision is made by their insurance company.  They play God, and the luck of the draw is what kind of insurance coverage your employer wants to give you.  Scott was lucky enough to have good insurance and is very glad he went on the vent.  He said it's not even half as scary as he thought it would be, and it's given him another three years, as of this July, that he wouldn't have had.  He is totally alert and engaged in the world and his life. It's just that someone hit the "freeze" button and froze everything but his eyes.

And now, just as they are talking about the very real possibility of drugs that make a difference and making the disease chronic until they reach the cure and doing it in a future that is becoming within reach, Scott's insurance ended and we have to come up with the $396,000/year that in-home nursing costs.  We are in the process of cashing out our investments to keep the quality nursing that has Scott in perfect health except for needing the vent due to the disease.  There are no real programs to help someone Scott's age.  Under 20, tons of aid.  Over 62, again, lots of help.  21-61, nothing.  

Going to a nursing home would literally kill Scott in a short period as they lack the hands-on nursing Scott needs. What aid programs that are available to people our age force you to lose virtually everything before they help you.  It's not bad enough that you're sick, you have to watch every part of your life get destroyed, on top of it.  The cherry on top of it all is that the people who made the rules and guidelines have gold level health care for life, through the benefit of holding elective office.  They should be forced to choose from the insurance policies available in their home states and regions.  They work for us, why can't we get the health coverage they have?  

How does a person with ALS work and make a living? Well, at first just like everyone else except that you're living with a giant ticking clock inside your head.  If you spend your time wondering how much longer will I/he/she be able to do ________,  you'll drive yourself crazy.  The same goes for wasting time wishing you could do something you no longer can.  You have to consciously be in the moment. This is where we are NOW.  This is just how we live NOW.  Try to prepare for all the upcoming changes at the beginning, right after diagnosis.   Where will you put the bedroom when they can't do stairs? Do you have a full bath on the first floor?  Where will ramps be needed?   When eating becomes difficult, do you have a food processor to puree their meals? I had the best luck with cooking meals just as if I were serving them whole and then pureeing each part separately.  That way it still tasted the same so Scott could choose a bite of this or that and not just some grey tasteless blob.  

If they choose to go on the vent, what electrical updates are needed to handle the machines and equipment that will be needed?  That way, when the changes come (and they will come, you just don't know when) you're not totally blindsided. Even though our routine was very different, Scott worked as long as he could.  That was what the doctors recommended.  If you quit everything, you end up quitting life, and that will get you nowhere fast.  

Scott dropped the extras that drained him - committees, boards - but that was mostly due to how quickly he progressed.  

So besides for living one day at a time with the challenges it brings, what else are you up to?

Molly: When Scott was still more mobile, we had a fundraiser for research July 7, 2007. We netted $68,811.00!  We worked with Senator Casey's office to promote the Healthcare Reform Bill by participating in a health care Round Table in Harrisburg and a Town Hall at Lock Haven College.  We go to the movies, for "walks" around the neighborhood, family picnics, neighborhood picnics,  Fulton and Mt. Gretna theaters.  We're looking forward to a cousin's wedding in September and two days ago, met a fellow PAL who was in the area to promote his book. He lives in NYC and is looking forward to communicating and commiserating with Scott online.  

We can't be as spontaneous as we used to.  Scott can't dash to the car if it's raining and whoever is securing his chair to the van gets drenched positioning him and tightening the tie downs.  We take advantage of good weather as much as we can.  Scott has become a fan of books on CD and is a participant in Drexel's BCI Brain Interface Study where he is a "guinea pig" testing a new communication device that reads electrical impulses from his brain to type, surf the web and work email.  He's got the typing part down pat and is coming along on the others. Scott says I covered it as well as he could have.


snuggling supervised by family cat

Is there anything else you two would like to tell our readers?

Molly: Yes, We Need Their Help!  Your readers can help in so many ways. We need them to go to the website and donate of course and tell all their friends about it, too. We are also working with Wendell Potter, the insurance executive who blew the whistle on the industry and wrote the book Deadly Spin.  We met him at F&M College in March right before we began our website and he agreed to not only help promote it but would like to try to shine a national light on Scott's situation to try to shame the insurance company into paying for his nursing and vent care that is not covered by Medicare.  We need your readers to write to their Congressional representatives and senators, we need them to write to the major network news departments in addition to CNN and all the MSNBC shows, etc. to try to get them to focus on the story and what's happening - not only to us, but to many more in Scott's situation.    

The insurance companies have turned into corporate hit men. They answer to no one, no law.  They decide who gets to live and who's expendable, solely on their bottom line.  It's like playing the shell game with your life.   Even when insurance was paying, they were only paying two of the three nursing shifts we need.  We and our families have been paying the $130,000+/yr they don't cover since 2008 - even though his employer's insurance policy stated that they paid 100% after the deductible was met.  

They can violate their own contracts and not be held accountable.  We paid our premiums faithfully every month and they reneged on their promise.  We were promised an extended Cobra and they "lost" the one paper they said they needed to grant it.  

Nursing homes are just not set up for patients like Scott and anyone on a vent who can't speak.  ALS patients are completely aware of their surroundings and need someone virtually in the same room with them 24/7.  No nursing home can do that. Only in-home nursing has that capability.  Each patient needs  five-seven nurses who know their routine, thus each in- home patient creates five-seven jobs and the income tax that goes with them.  

When ALS patients' families have to cash out their investments and savings, local state and federal income taxes are lost forever and you've created another family that needs government aid in some form.  ALS hits mainly men right at the age where their kids are looking at college.  With their father's care draining the family funds, college is now out of the question and as everyone has heard, having a college degree means you'll earn about $1 million more over you're lifetime.  No college, no extra income, no extra revenue for local state and federal agencies.  See the circle?  Yet insurance companies are boasting record profits.

OK; done with my soapbox again.  Scott says he likes what I typed and doesn't have anything to add.

Thank you so very much for sharing your story with our readers at OpEdNews, Molly and Scott. Good luck to you. Please keep us in the loop.

Molly: Many, many thanks, Joan. 

***
Photos are from Molly and Scott's website

Wendell Potter's blog about Molly and Scott: Health Execs Get Richer as Some Americans Beg for Help to Pay Bills, April 28, 2011

Thank you to Jerry Policoff for bringing Scott and Molly's situation to my attention.

Thank you to Judi Mansfield for editorial assistance.

 

http://www.opednews.com/author/author79.html

Joan Brunwasser is a co-founder of Citizens for Election Reform (CER) which since 2005 existed for the sole purpose of raising the public awareness of the critical need for election reform. Our goal: to restore fair, accurate, transparent, secure elections where votes are cast in private and counted in public. Because the problems with electronic (computerized) voting systems include a lack of (more...)
 
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This interview is substantially longer than most o... by Joan Brunwasser on Tuesday, Jul 26, 2011 at 10:11:08 PM
The U.S. might well the best health care... by Jill Herendeen on Wednesday, Jul 27, 2011 at 11:28:42 AM
i can't disagree with much of what you've said her... by Joan Brunwasser on Wednesday, Jul 27, 2011 at 11:59:05 AM
The U.S. might well the best health care... by Stephen Zimmett on Thursday, Jul 28, 2011 at 1:12:10 PM
according to WHO - the world health organization, ... by Joan Brunwasser on Thursday, Jul 28, 2011 at 1:58:23 PM
Merely an observation.... by Jill Herendeen on Saturday, Jul 30, 2011 at 9:40:01 AM
After all, WEALTHY foreigners come here to buy it.... by Jill Herendeen on Saturday, Jul 30, 2011 at 9:37:50 AM