Stephen Hawking, ALS and the Importance of Having a Mission

We watched the PBS show Hawking this week (it's now on. Netflix). The show chronicles his personal life. The show is centered around his struggle with ALS, in tandem with his rise to notoriety in the scientific community and celebrity in the public eye. The movie is narrated by Hawking himself in his recognizable synthesized voice.

In the show, Hawking makes several observations which Linda and I (and I'm sure thousands of pALS who have preceded us) have made since my diagnosis in 2007. Hawking says dealing with the effects of ALS, in some ways, is easier for him than for his family. Very true. I have the "luxury" of being forced to give up my household responsibilities. The not so obvious down side to outside observers is the strain it puts on the rest of the family. Linda has learned to do "man stuff" to the point where, for Christmas this year I bought her a purple tool kit - and she liked it (or pretended to). I, on the other hand, feel a sense of frustration and sadness every time she and/or Matt take on a task that I should be doing. Hawking's point was that, being forced to sacrifice the things which make for a normal life, gives one time to observe and think. It's what you choose to think about that matters.

The logical extension of Hawking's observation about having nothing to but think (and remember except in rare exceptions ALS leaves the mind intact) was that having goals and remaining active have been crucial to his survival. Hawking was 71 when this movie was produced. He was 21 when he was diagnosed. His goal was to become a world famous Cosmologist, a goal he achieved with his first book.

Certainly no comparison to Mr. Hawking's achievement, but in the seven years I've lived with disease he's proven to be absolutely correct again. I did my best for the first two years after my diagnosis to remain active in my fledgling business. After I officially retired, and while I was physically less cumbersome to move around and care for, the family took day trips, visits to Mass General for clinic were turned into overnight family trips, I wrote a LOT and we pretty much had fun, within my physical limitations, which were fewer at the time.

Having a goal and purpose changed in the Spring of 2013, when we heard about this guy named Steve Saling. We "met" Steve on Facebook. After reading about this facility that was named after him and subsequently reading local newspaper column about a lady with ALS who had been in a local hospital for over a year, curiosity got the better of me and we arranged a visit. You see, this ALS patient was in the hospital because there is no long term care facility In Maine equipped to care for a fully ventilator dependent ALS patient.

I had a dream about this lady and her family that I'm convinced came from God. Some would say it was just on my mind. Regardless, I woke from a sound sleep weeping and determined that no ALS family should go through what this lady's family were going through. I made my living for the last 12 years of my career getting clients to question the status quo in their businesses. Now I was asking: "Why is this happening to this family and the powers that be are just accepting it?".

So a group of friends and family go with Linda and I to The Leonard Florence Center for Living in Chelsea, MA and spend an amazing afternoon with Barry Berman, CEO of the Center and Steve Saling himself. They gave a tour of the entire facility, the majority of which is Elder Housing. The Steve Saling ALS/ MS Residence is a 10 patient facility housed inside The Leonard Florence  Center and I think it's safe to say we were all blown away at the end of the day.

The ALS Residence concept is built around the premise that, until there's a cure technology can enhance and lengthen the lives of patients with ALS and MS patients...correction: residents. Even ones with only the ability to work a specialized speech device with their eyes, have complete independence to move throughout the building. Because of the building's technological infrastructure residents can open doors, operate elevators, lift shades and turn on lights, their TV's and stereos. 

Every room is decorated to the resident's taste, enhancing the feeling that this is a home, not a "facility". There is commercial grade kitchen in the center of the residence with special cook tops which never get hot to the touch. There is a central living room intentionally designed with no TV to encourage interaction between residents and between residents and guests.

So, you ask, what does this have to do with Stephen Hawking? Well, first of all, Mr. Hawking made a phone call to,Steve Saling on the day the Saling Residence opened. He said: "I look forward to living centers such as this becoming a standard for the world."

Interesting choice of words - living center. Not a warehouse where people are ignored because they are paralyzed. Not a place to wait to die because, after all, the doctor said you have 2 - 5 years so, max out your credit cards and get your affairs in order (that's what we were told). And certainly not a place without Hope (you knew I couldn't post without using that word, didn't you?)

The Hope-JG Foundation intends to advocate, pester, beg, demand, fundraise, shake hands, blog, Twit,  Facebook and shout from the mountain tops until there is an ALS/MS Residence in Maine. It's needed and, with the increased awareness of ALS thanks to the Ice Bucket Challenge, the time is now.

If you want to know more about our mission and the ALS/MS Residence concept, go to our website: http://www.hope-jg.org/#!projects/c21kz. (Be sure to watch the videos).

For more about the ALS/MS Residence initiative visit: www.alsri.org

An Open Letter to Marilyn Tavenner About Medicare and Speech Devices

The letter which follows was sent to Marilyn Tavenner, Administrator of the Center for Medicare and Medicaid Services (CMS). I understand a number of organizations have been told to stand down on any organized letter writing or calling campaigns.

As I wrote on this blog on July 28th, ALS patients don't have the time to wait for the political wheels of change to churn - especially in a mid-term election year.

I'll allow the letter to speak for itself, since I haven't spoken in 5 years. And if CMS and Ms. Tavenner's recent rule changes are allowed to stand, I'll only be allowed to "speak", should I lose my hand function, to people in face-to-face situations. No internet. No email. No text. No Facebook. Not even word processing.

That's wrong. If CMS is acting within the bounds of its legal authority, Congress needs to change that. If not, these rule changes need to be reversed and people held accountable. This isn't a political issue. This an issue of fair and equal access for millions of speech impaired people in this country. The current state of affairs cannot stand and the speech impaired of this country cannot be allowed to be silenced by a bureaucracy that is taking a technological leap backwards 20 years.

Feel free to share this letter. Feel free to write your own. Every day 14 people die of ALS and 14 more are diagnosed. Don't let any of them die without being able to say goodbye to family and friends miles away.

August 8, 2014

The Honorable Marilyn Tavenner
Administrator
Centers for Medicare and Medicaid Services
7500 Security Boulevard
Baltimore, MD 21244

Dear Ms. Tavenner,

I am writing as a private citizen and someone afflicted with Amyotrophic Lateral Sclerosis (ALS) since 2007. I am also a person, because my hand function is deteriorating and my speaking voice is gone, who will soon need a Speech Generating Device (SGD).

The purpose of my letter is to express concern over CMS Final Rule 1526-F, which as of April 1st of this year moved SGD's from the "fully purchased" category to "capped rental".  I also have concern with the pending September 1st deadline which will prohibit beneficiaries from adding communicative software to a Medicare rented SGD, such as text, email and video conferencing.

I am certain, after receiving the letter dated March 6th from Senators Cochran and Schumer and Representatives Sensenbrenner and Crowley requesting CMS delay the April 1st implementation, a letter dated July 9th from my own Senator Collins and multiple letters from various advocacy groups and individuals, you are aware of the concerns over this issue.

I am writing this as an Open Letter and intend to share this on social media. Please understand my purpose is not to embarrass CMS or you. Rather, my purpose is to obtain clarity because of rampant misinformation, misinterpretation and in all candor, because I have yet to see CMS' rationale behind the April 1st decision or the upcoming September 1st deadline.

I am also writing  Molly Moran and Rebecca Bond of the Civil Rights Division of the Department of Justice on this. I am asking for clarity as to whether CMS is subject to the Americans with Disabilities Act and/or if CMS' decision to prohibit speech impaired people from purchasing additional functionality for their SGD, as has been the practice in the past, is considered a civil rights violation. Functionality such as email, texting, video conferencing, all requiring internet access, and word processing are common communication tools to which non-disabled individuals commonly have access. It is my personal feeling that CMS, even if it is not subject to the letter of the ADA, is certainly guilty of violating the spirit of the law with these new rules. The topic isn't "Medical Necessity", it's fair and equal access for the disabled.

I am including, for your review, pertinent excerpts from two DOJ documents which make clear DOJ's recognition that disabled individuals are using Internet Protocol (IP) tools such as text, email and video conferencing with increasing frequency, especially for e911 service.

Let me be clear: The 2.5M speech impaired people in this country and I am not asking CMS to pay our internet access bills, or for apps for gaming or for any other functionality beyond face to face communication (as is the goal of the September 1st deadline). However, like you, I want to be able to text my 18 year old son to be sure he's ok when he's out. I want to be able to type a letter to my Aunt in Indiana. I want to be able to email my Congressional Reps when I have a concern. I want to turn my TV and stereo on without relying on someone else. I want to post a Facebook message of love and support to a friend with ALS in Oregon. I want access to what "normal" people have. CMS won't let me, even though the technology is available at no extra cost to Medicare. Prohibiting access to communication tools which most 10 year olds use every day, especially when there is no cost incurred by CMS, defies logical thought.

I would ask that you answer the following questions in detail:

-  Regarding capped rental, why did CMS choose this as an option, even though it will result in a 5% increase in cost?

- How aggressively does CMS plan to enforce the provision that takes a customized SGD away from a beneficiary when they need it most? (During an extended inpatient stay.)

-  What is the rationale behind prohibiting a beneficiary and vendor from adding IP related communicative functionality at the beneficiary's expense?

-  Since most SGD manufacturers have been innovating with their hardware and software development to include IP related tools including Social Media apps like Facebook, will CMS refuse to cover these devices after September 1st?

-  Please explain the rationale behind not covering "eye gaze" equipment because it's considered an "access method". How does CMS propose a paralyzed individual use an SGD effectively? Is this an attempt to shift the cost of equipment to the beneficiaries?


Thank you so much for your attention to this matter. I am planning a trip to DC in the coming weeks. If you would like to meet, I would welcome the opportunity. I understand that CMS has been vilified regarding this issue in the social media. 

My fervent hope is, in some small way, my efforts with you and my Congressional delegation, can help bring about changes which equitably meet the needs of CMS and the millions of beneficiaries it serves. I look forward to seeing your response.

Sincerely,



John A. Gregoire

A New Normal

It's a phrase Linda and I have used. It's a phrase we've heard countless people with ALS (pALS) us. The New Normal.

Many of you have heard the story of, how after I was diagnosed in Boston, Linda and I stood in the driveway of the hospital and decided that the Doctor's 18 month death sentence would not stand. It's coming on seven years and I'm still here, and causing more trouble than when I was "healthy".

One thing we found was a lesson I wish I'd have paid more attention to before my diagnosis: adaptability. You're facing a disease with no cure or even an effective therapeutic treatment. A disease that relentlessly takes and takes. The only thing it doesn't affect is your mind. So each day, you learn to adapt. It becomes your New Normal.

Early on, my New Normal meant finding a way to open a jar with a weakened left hand. My New Normal was finding a way to carry my computer bag and rolling carry on on a business trip - and asking a flight attendant to lift my carry on to the overhead storage. My New Normal was learning to relax and breathe during a public speech or presentation so I wouldn't get breathless. And learning to sip water frequently to prevent my voice from becoming nasally.

Then the New Normal was walking with a cane. Not bad because my Dad did it as long as I knew him. It was the tripping and falling, at the office, in airports, on subways, that was the New Normal I found most difficult emotionally. 

The New Normal has been a clear sign of the progression of ALS. But it's also been an opportunity for us to stick a finger in the eye of The Monster  by finding ways to adapt. That often means putting pride in the trunk and letting humility ride shotgun on this journey. Can't walk? Wheelchair. Can't talk? Speech app on an iPad. Can't eat enough? Feeding tube. Fatigue? Bi-pap. And the list has and will go on.

So far, we've found ways to adapt to the New Normal because we refuse to give in to The Monster. We've been blessed by giving, and we've given from our lack. As the Bible promises, we get more back in blessings - both tangible and spiritual - the more we give.

My family isn't unique. Each year there are at least 5,000 new families who are told they have ALS and embark on their own unique journey to deal with their New Normal. They'll adapt to a slower pace of life. They'll find a way to get ramps, lifts, wheelchairs and whatever they need to keep The Monster at bay. 

They'll also become more appreciative of the small things that really matter. Laughter is the biggest thing for us. We laugh ever day, even if it's laughter borne of frustration because tears are the only other option.

And they will that friends and family will come and go. Partially because it's tough emotionally  and they have the luxury of taking a break the immediate family doesn't have. People will come and go too because they don't understand the New Normal...and they don't understand the laughter.

Everyone has a New Normal phase. New job. New house. Lost loved one. Broken heart. Adapt...it's life...and it's normal.

Never. Lose. Hope.

“Totally without hope one cannot live. To live without hope is to cease to live. Hell is hopelessness. It is no accident that above the entrance to Dante's hell is the inscription: "Leave behind all hope, you who enter here.” 

― Jürgen Moltmann, Theology of Hope

Chris Rosati, the guy who, when's diagnosed with ALS, decided to hijack a Krispy Kreme Donut truck (http://youtu.be/eMNVJZRIU9s), noticed that everyone else he met with ALS consistently had a smile and optimistic attitude (http://youtu.be/17nNg7lT3Yc).

Linda and I latched on to Hope early in our ALS journey. In 2008, in Redding, CA Linda bought a metal bean with Hope inscribed on it. I've carried it with me ever since. A year later we were blessed with our van and dubbed it the Hopemobile. We lease it for $1 a month. Next came the Hope Page on Facebook. A series of photos with people writing Hope-JG in the sand and on signs from around world. And finally, our puppy, who came with the name Hope.

The quote above says the entrance to Dante's hell is inscribed with the words: "Leave behind all Hope, you who enter here." To live without Hope - with or without ALS, is indeed to live in a state of hopelessness.. Hopelessness is not a normal condition of the human spirit. 

Henry Kissinger said "A diamond is merely a lump of coal that did well under pressure." My friend, the sun will always come up tomorrow. No matter what trials you face, you are a diamond in the rough. Remember that if Hope begins to waiver. 

We all have rough days. We all slip into despair. Hope can pull you through. Hope is not magic. It's in your DNA. 

Never. Lose. Hope.

Sherlock Holmes, A Rose and Providence

The Master of Deductive Reasoning, literally stops to smell the roses. In so doing, he walks the reader perilously close to saying, "God is good."

“What a lovely thing a rose is!"

He walked past the couch to the open window and held up the drooping stalk of a moss-rose, looking down at the dainty blend of crimson and green. It was a new phase of his character to me, for I had never before seen him show any keen interest in natural objects. 

"There is nothing in which deduction is so necessary as religion," said he, leaning with his back against the shutters. "It can be built up as an exact science by the reasoner. Our highest assurance of the goodness of Providence seems to me to rest in the flowers. All other things, our powers, our desires, our food, are all really necessary for our existence in the first instance. But this rose is an extra. Its smell and its color are an embellishment of life, not a condition of it. It is only goodness which gives extras, and so I say again that we have much to hope from the flowers.”― Arthur Conan Doyle, The Naval Treaty

Ice Bucket Challenge A Great Awareness Tool

http://youtu.be/eJXo2Q18SXU

 My oldest son sent me a Facebook video of Boston. Bruin's Winger Brad Marchand dumping a bucket of ice water over his own head. Turns out, it's part of an ALS awareness campaign for Boston College former baseball captain Pete Frates, who was diagnosed with ALS at 27 and is now 29 with a  baby on the way.

In typical Boston Strong fashion, the major sports teams in Boston, private citizens and the Boston Police and Fire Departments have responded to the call and created their own videos and have challenged others. The video above is New England Patriots Receiver Julian Edelman responding the challenge...and see who he challenges:)

For the uninitiated, this how it works:

  Someone fills a bucket of ice with some water and dumps it over his/her head and films it

-  They post it on Facebook or Twitter.

-  in the video, they challenge others to do the same (see video of Patriot's Julian Edelman).

-  The challenged individuals have an allotted time to respond with their own video or donate $100 to ALS research.

A great, fun way to raise awareness! Feel like cooling off?

The Human Spirit Hopes, Often In Spite of What's Logical

I LOVE this quote by the author who wrote the children's series about King Arthur from which Disney pulled The Sword in the Stone. It demonstrates beautifully,  in spite of all our grumbling about petty things (and big things we can't control), there is always the smallest, glowing ember which just needs a gentle breath of a sigh of resignation or even the slightest breeze when we turn our backs to walk away, to create an inferno of Hope and optimism. The human spirit is only destructible if we lose love,beauty, faith or hope.

“Life is such unutterable hell, solely because it is sometimes beautiful. If we could only be miserable all the time, if there could be no such things as love or beauty or faith or hope, if I could be absolutely certain that my love would never be returned: how much more simple life would be. One could plod through the Siberian salt mines of existence without being bothered about happiness. Unfortunately the happiness is there. There is always the chance (about eight hundred and fifty to one) that another heart will come to mine. I can't help hoping, and keeping faith, and loving beauty. Quite frequently I am not so miserable as it would be wise to be.”
― T.H. White, Ghostly, Grim and Gruesome