Friday, June 27, 2014

Living In Hope's House

“The very least you can do in your life is figure out what you hope for. And the most you can do is live inside that hope. Not admire it from a distance but live right in it, under its roof.”
― Barbara KingsolverAnimal Dreams

Wednesday, June 25, 2014

Advocacy: Do New Medicare Rules Violate the ADA?

On April 1st, the Center for Medicare and Medicaid Services (CMS) instituted new rules for Durable Medical Equipment (DME). CMS has now reclassified certain categories of DME, including Speech Generating Devices (SGD's) from "routinely purchased" to something called "capped rental". 

Since April 1st, anyone, like me, who needs an SGD, will have 13 months where the device is rented by CMS (a more expensive option than a purchase by the way). If the user of the rented SGD goes into a hospital or nursing home for an extended period CMS has the discretion to take the device away - at a time when communicating his/her wishes is most crucial. 

Make no mistake, SGD's are highly customized to the individual. Every speech impaired individual has a need for different data entry methods. Some can type, many autistic children tap icons, many ALS patients eventually require eye gaze capability and still others with limited use of hands and feet use a scan and switch system. The idea that a speech impaired person can be provided with a generic speech device at a nursing home or hospital, and communicate effectively, is simply not practical.

But it gets worse. Since the inception of SGD's, CMS has restricted these devices as Speech Generating Devices only. They have required SGD makers to "lock down" any additional functionality. In 1991 this wasn't a big deal. Think about what you had for a cell phone in '91 (if you even had one). As time and technology have progressed, SGD makers have added functionality such as email, text messaging, voice relay calling and even social media like Facebook and Skype. All tools the average10 year old has on their smart phone today. And all tools which greatly enhance the lives of disabled individuals to remain connected socially.

Prior to April 1st, CMS allowed beneficiaries to pay makers of SGD's to "unlock" the additional functionality. That is no longer possible under the new rules. Most SGD makers are so confused by the April 1st ruling passed down by CMS, they'll are erring on the side of caution and have stopped "unlocking" devices since April. As of September 1st, CMS will become more vigilant about ensuring SGD's under the capped rental rules, are all "locked down".

The American with Disabilities Act (ADA) states: 

"Findings. The Congress finds that

(1) physical or mental disabilities in no way diminish a person’s right to fully participate in all aspects of society, yet many people with physical or mental disabilities have been precluded from doing so because of discrimination; others who have a record of a disability or are
regarded as having a disability also have been subjected to discrimination;

(2) historically, society has tended to isolate and segregate individuals with disabilities, and, despite some improvements, such forms of discrimination against individuals with disabilities continue to be a serious and pervasive social problem;

(3) discrimination against individuals with disabilities persists in such critical areas as employment, housing, public accommodations, education, transportation, communication, recreation, institutionalization, health services, voting, and access to public services;

(4) unlike individuals who have experienced discrimination on the basis of race, color, sex, national origin, religion, or age, individuals who have experienced discrimination on the basis of disability have often had no legal recourse to redress such discrimination;

(5) individuals with disabilities continually encounter various forms of discrimination, including outright intentional exclusion, the discriminatory effects of architectural, transportation, and communication barriers, overprotective rules and policies, failure to make modifications to existing facilities and practices, exclusionary qualification standards and criteria, segregation, and relegation to lesser services, programs, activities, benefits, jobs, or other opportunities;

(6) census data, national polls, and other studies have documented that people with disabilities, as a group, occupy an inferior status in our society, and are severely disadvantaged socially, vocationally, economically, and educationally;

(7) the Nation's proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living, and economic self-sufficiency for such individuals; and

(8) the continuing existence of unfair and unnecessary discrimination and prejudice denies people with disabilities the opportunity to compete on an equal basis and to pursue those opportunities for which our free society is justifiably famous, and costs the United States billions of dollars in unnecessary expenses resulting from dependency and nonproductivity."

There's a lot to chew on above, and the current document of the ADA is detailed and comprehensive. The bottom line is, for the sake of this discussion, is that CMS is discriminating against the 2.5 Million speech disabled individuals in the US by barring access to important modes of communication which are now ubiquitous throughout society. In doing so, they are violating the spirit, if not the letter of the ADA.

Did you know any of this? My Neurologist, who sees dozens of ALS patients each week, didn't. Eight years ago, I frankly wouldn't have cared because it didn't affect me...yet. 

Our foundation has been communicating with ALS advocates, makers of SGD's, both Houses of Congress and the Disability Rights Center here in Maine about this issue. 

Wanna help? Pick up the phone and call your Congressional Reps. Tell them what you think about this. CMS's rule change is more expensive and more discriminatory than their prior rules. They can't  (or won't) provide solid rationale behind their decision. Is it possible they are seeking to generate cost savings by forcing more speech impaired individuals to purchase their own, fully functional SGD's rather than go through Medicare? By the way, many of these devices run between $10,000 to $20,000 - well beyond the financial reach of 
the disabled.

Read the CMS Coverage Reminder for yourself:

To find contact info for your Congressional Representatives:

Monday, June 23, 2014


“To love means loving the unlovable. To forgive means pardoning the unpardonable. Faith means believing the unbelievable. Hope means hoping when everything seems hopeless.” ― G.K. Chesterton

Friday, June 20, 2014


Note: This is a re-run of a old Facebook post. I ran across it this morning, and during this season of graduation, "empty nesting" and other life changes, it's more true than ever. - JAG


After far too much time spent battling "the system" (mortgage companies, government and social service agencies and the like) trying to hold on to our home, obtain assistance for the daily battle against ALS and all the worldly junk that goes with it, I took some much needed time last week to pray and meditate. Truth be told, I've been so mired in crunching numbers and filling out forms that my daily routine of prayer and devotional reading had been put on a shelf. Last Friday morning, I read this passage from Philippians:
" I once thought these things were valuable, but now I consider them worthless because of what Christ has done. Yes, everything else is worthless when compared with the infinite value of knowing Christ Jesus my Lord. For his sake I have discarded everything else, counting it all as garbage, so that I could gain Christ and become one with him. I no longer count on my own righteousness through obeying the law; rather, I become righteous through faith in Christ. For God’s way of making us right with himself depends on faith." (Philippians 3:7-9 NLT)

I've known the value of perspective for some time now. It was a lesson I learned too late  my working life. I'm convinced that my professional and family life would have benefitted greatly from having had different priorities. Nothing I can do about that now.

For the present, I think I've re-calibrated the "Perspective Meter" and am back in a more balanced rhythm. It is amazing, however, to see how easily the world can suck you in and throw you off track. In just the past week since I've shifted gears, Linda and I have seen God's handiwork become evident in some unexpected blessings and a freshening of our spirits. I wish there was some way to distill the lesson on perspective I've learned over 56 years to transfer it effectively to younger people. It's a lesson that comes from the realization that your earthly days are truly limited - that the sand in our individual hourglass will indeed run out. For that matter, I wish I could transfer that lesson effectively to many of my contemporaries. I was Skyping with a former client in the UK last month. He lost his wife to cancer a few years ago. We touched on the subject of perspective and he shared a simple list he had given his younger brother not long after his wife's passing:

Charity/Helping others
Nothing else matters


Thursday, June 19, 2014

Where Does God Begin?

“Look, if you say that science will eventually prove there is no God, on that I must differ. No matter how small they take it back, to a tadpole, to an atom, there is always something they can’t explain, something that created it all at the end of the search.

“And no matter how far they try to go the other way – to extend life, play around with the genes, clone this, clone that, live to one hundred and fifty – at some point, life is over. And then what happens? When the life comes to an end?”

I shrugged.

“You see?”

He leaned back. He smiled.

“When you come to the end, that’s where God begins.”
― Mitch AlbomHave a Little Faith: a True Story

Wednesday, June 18, 2014

A Son's Love Drives His Passion to Innovate


When Ivo Vieira, CEO of lusospace, contacted me last month one thing was clear: He loves his Father. Ivo's dad was diagnosed with ALS in 2013 and has lost his voice. Traditional eye gaze technology is frustrating for him at best. But Ivo perceived an opportunity where others saw frustration and despair.

Ivo explained the technology his team had been working on. Eyeglasses which would project a virtual, eye gaze capable keyboard in the wearer's field of vision and would "speak" what is typed with the eyes thru built in speakers. Pretty cool.

The Hope-JG Foundation did some research and we decided to include  Mr. Vieira's new company, lusovu, and the glasses called Eyespeak, as our third Innovator.

Because ALS is an orphaned disease, it's almost always family, friends and the afflicted who are passionate for change. We love passion - and we love this concept.

To find out more, go to our Innovators page by clicking here.!innovators/c23ff

Check out their Kickstarter campaign and think of the possibilities:)

Friday, June 13, 2014

Welcome Our Newest Innovator

John Costello is my Speech and Language Pathologist. He lectures around the world and is arguably the "Father of Message Banking", which he's been doing for 20 years. 

We are honored to have Mr. Costello as our second Innovator. His vision is to create a center which will support the growing need for his message banking service. 

As a side note: If i had known about message banking before my voice was slurred, i would have a bank of messages like: "I love you." for my wife, "Good job buddy." for my sons and even "Give me a break!" for times when i'm exasperrated. Not a robotic voice - my own voice saying things with my own unique tone and inflection. Part of what made me, me. If you know or are someone who has been diagnosed with ALS, please get started message banking as soon as possible.

Please watch the video and read the recent Boston Globe article about John, his work and his passion to help people preserve part of what makes them unique.!innovators/c23ff

Wednesday, June 11, 2014

Calling Passionate People

We got home yesterday from clinic, always a tiring day for both of us, a little after 6 and crashed for the night. Seeking to "veg out", we flipped on Netflix and settled on a documentary called "Spinning Plates". It's about three diverse restaurants in three very different locales and the people who run them. 

The film begins by introducing the three restaurants and the film's narration is entirely the owners voices. The common thread is a subject that's been dear to my heart since early youth: Passion. I guess that comes from my Dad who was passionate about life, learning, family, teaching, coaching and friends.

The passion displayed by the restaurant owners comes from different places. In Iowa, it's love of community and a sense of family history. In Arizona, it's love of family and just trying to provide a better life. And in Chicago, passion is demonstrated by a young restauranteur/chef named Grant Achatz, who my immediate reaction to were words like "pretentious" and "arrogant (and I was wrong). Grant and his business partner run a restaurant called Alinea, a 3 star Michelin winner. Grant and his staff creat Nouvelle Cuisine art by combining science with gastronomy and their dishes are meticulously thought through and constructed. 

A little more than half way through the film, it turns from a fairly typical "three neat places to eat" to a more human drama. Grant tells of being diagnosed with Stage 4 tongue cancer and is told by four different doctors that the only way he has a chance of surviving is to remove his tongue and part of his jawbone. Imagine, you make your living with your taste buds and you're told you'll lose the very thing that enables your passion to come to life. I won't give away the rest of the movie for those who want to watch (two thumbs up here). 

Our foundation is determined to see an ALS/MS Residence built in Maine. It's needed. There's no reason people without family or with family incapable of caring for a patient with neurodegenerative disease should have so few alternatives for living out the time they have in anything but a nurturing environment. We are passionate about getting this done. We need people to join us who are equally passionate. 

It doesn't matter what your talents or gifts may be. If you're passionate about using them to help others, we want to talk to you to explain more about our vision. You don't need to know a lot about healthcare, ALS, MS, or any other neurological disease - we'll share what we know. All we need are people with an unquenchable passion to help others. 

Are you passionate? After all, it's no coincidence the word 'passion' is in 'compassion'. 

Contact us by email at

Monday, June 9, 2014

“To hope under the most extreme circumstances is an act of defiance..."

“To hope under the most extreme circumstances is an act of defiance that permits a person to live his life on his own terms. It is part of the human spirit to endure and give a miracle a chance to happen.” 
― Jerome Groopman

I sit here today, trying to recoup from a few intense, emotional days surrounding the graduation of our youngest son and looking ahead to a week full of meetings and doctors visits, my mind wandered. It wandered to the idea of Hope. Heaven knows, with the launch of the foundation barely a month past, it seems like it's all we've talked about - this Hope thing.

Linda and I have heard whispers and Facebook posts alluding to "too much hope" and similar sentiments. We've even heard it said that we're cheapening the word 'Hope' to little more than a Hallmark greeting by using it so much and so prominently.

When I ask myself: "Is there such a thing as too much hope?", no matter how hard I try to rationalize it, I still come up with same answer. Nope. Now, I'm not talking about false Hope or even living in a state of denial. I'm talking about honest, heartfelt hope that comes from an unshakeable faith that good things will happen no matter what my circumstance today. 

Webster's defines hope as: "to expect with confidence:trust". Trust. if I 'hope', I 'trust'.  The quote that begins this post says Hope is an act of defiance. I believe that's true. To live in a state of constant hopefulness isn't any easier than trusting people all the time. Hope, like defiance, takes willpower and effort. It ain't easy.

The Bible (my favorite book) is full of references to hope, and many of those same verses speak of trusting God. But Christians don't have an exclusive on Hope or trust. Gandhi said: "I believe in trusting. Trust begets trust. Suspicion is foetid and only stinks. He who trusts has never yet lost in the world.” It's not a stretch to say Gandhi believed the he who hopes has never yet lost in the world, too.

Am I discounting those who forsake Hope for despair or those among us who have hoped but are just tired of the struggle? Absolutely not. There comes a time for every warrior to lay their shield down, and we honor that. What I'm simply trying to do here is the same thing The Hope-JG Foundation is intended to do. To encourage those who are tired and weary, no matter what your struggle, to take one more step when you think you've taken your last. 

Get defiant - your personal miracle may be tomorrow.

*BTW: Learned a new word today. The Gandhi quote uses the word 'foetid' which means "having a heavy, offensive smell"...huh.

Thursday, June 5, 2014

Our Recent Radio Appearance with Shannon Moss

YOU guys get to hear my amazing wife at her best:)!audio/c173o

Listen to Shannon Moss week days from 9 - 11 a AM Eastern time. Streaming live at: This audio is used with permission.

Monday, June 2, 2014

A Lesson From a Man With A New Outlook

I love this quote from Lee Atwater, who was arguably one of the most ruthless political minds in memory. Atwater died of brain cancer some time ago but facing his mortality gave him a shift of perspective few can understand, unless they've been there - trust me.

"My illness helped me to see that what was missing in society is what was missing in me: a little heart, a lot of brotherhood. The '80s were about acquiring — acquiring wealth, power, prestige. I know. I acquired more wealth, power, and prestige than most. But you can acquire all you want and still feel empty. What power wouldn't I trade for a little more time with my family? What price wouldn't I pay for an evening with friends? It took a deadly illness to put me eye to eye with that truth, but it is a truth that the country, caught up in its ruthless ambitions and moral decay, can learn on my dime. I don't know who will lead us through the '90s, but they must be made to speak to this spiritual vacuum at the heart of American society, this tumor of the soul."