I SHOULD BE DEAD - BUT HERES WHY IM NOT

PROLOGUE:  On this final hour of ALS Awareness Month, I wanted to re-post this blog I was blessed to write for our friends at Functional Formularies. Even though May is designated as ALS Awareness Month, for every family living with (or who has lived with) ALS, every minute of every day is a time they are painfully aware of this still incurable disease.  ALS doesn't take time off. It's a relentless, still uncontrable force rhat rips and shreds its way through the very fabric of a family. The story below is our story. Every victim of ALS has a different story with commen themes. We honor the plight of every afflicted individual and their families. This may be our story but there are thousands of stories like ours - and thousands more that are different,with the exception of thc  common foe. We offer our story for one reason: to offer hope that there's a fight to be had. If you have a family fighting ALS in your town, visit or call them and ask what you might do to help. It might be as simple as mowing a lawn or even sitting and holding a hand.  

I should have died in 2009. And I probably would have if I'd listened to the Neurologist at St. Elizabeth's Hospital in Boston. If we had taken his words to heart. Taken them as fact, rather than an educated guess, I'd be dead. If I had let his words "I'd say you have 18 - 24 months to live" soak into my brain like a toxic chemical spill on pristine marshland, I'd be dead.  But, in the parking lot outside the hospital on that cold December day, Linda and I made a pact that we wouldn't let the words of any man, regardless of his scholarly pedigree, dictate the rest of our lives. 

 I'd be dead if we had followed the course of action of my first Neurologist here in Maine: "There's nothing I can do until you're faced with the choice of going on a ventilator.." he said, at what would our final meeting (although, he didn't know that). 

When we told friends and family about my diagnosis the reactions ranged from "What's ALS?" to "Well, you'd better get your affairs in order fast.". All sincere and heartfelt reactions. But no one offered the one thing we really needed - Hope. Even people at church would say "We will pray for you - but you know, there's reality face too.".  No one offered the kind of Hope that we felt in our bones.  We lean on the Biblical definition of Hope. Not as wishful thinking, but as the confident expectation of something good. Again, if we'd have received those dismal thoughts and adopted those attitudes as our own,  I'd probably be dead.

It wasn't until we found the ALS Multidisciplinary Clinic at Mass General Hospital (MGH), that we interacted with mainstream clinicians who were on the same "Hope Track" as us. During our first meeting with this amazing team, the male Nurse who was doing the intake and verifying medical history, told us "We're here to help you LIVE with ALS.". He was taken aback  when we both choked up. We had finally found our second home. 

In spite of the dire prognosis we'd received in 2007, my disease progressed slowly. Although I lost functional speech in 2010, I was able to eat by mouth all along. A major focus during my quarterly visits to the MGH Clinic was maintaining body weight or even increasing it. Multiple studies have shown that pALS (persons with ALS) have a longer life expectancy if they maintain a slightly higher than ideal body weight. By the summer of 2012, my ability to eat at a near normal pace became more of a challenge. I was keeping meticulous track of my daily caloric intake using the MyFitnesPal app on my iPad. I was taking in at or above 2600 calories a day, but by Christmas of 2012, I was spending most of my waking hours just eating. It was time to talk about a feeding tube. 

Our next ALS Clinic appointment was in January of 2013. The decision to undergo the feeding tube procedure was confirmed by the team at MGH and was scheduled for later that month. I had the surgery with just a local and some Valium. We had gone to school on the experiences of pALS who had undergone the procedure under general anesthesia. Too many, for our comfort, had extended post-operative stays and even complications. 

After an overnight stay, to ensure the tube was operating well and for a "Feeding Tubes 101" crash course from a Nurse, we were home with s case of commercial formula.  Being novices to enteral feeding, we never questioned whether there were alternative choices. We trusted the hospital dietician's choice. A mistake we wouldn't make again. 

Within a week, I started having severe gastrointestinal issues. Over the three months to follow, I would make four trips to the local ER. We heard varying opinions from the local clinicians,  from the popular "You'll just need to make friends with it." to "Its just the disease progression." We we're back at that place of no Hope. 

Linda is always thinking. Always reading and communicating with other caregivers. She ran across information on a small company from Ohio making a formula called "Liquid Hope". Now, we're people of faith. We'd seen God move on our behalf before and had no doubt this was another sign from above. We emailed Robin Gentry McGee, Founder of Functional Formularies the company from Ohio, spoke to our visiting Nurse who, after reading the ingredient list, was very supportive of trying this. Finally, after 3 months of  gathering insurance referrals from Doctors (my PCP and Neurologist by now trusted that we had done our research and were very supportive) and making the case to my insurance, they approved the move to Liquid Hope.  

It took only a few days to feel the difference. Gastrointestinal issues disappeared. The grogginess I experienced on the sugar laden formulas went away. As a matter of fact, i had a renewed sense of energy. During our next visit to MGH, I had gained back  5 lbs. over the three years I've. Even using Liquid Hope as my sole source of nutrition my blood work has been perfect and I've maintained my weight 185 lbs.  We believe it's saved my life. .

When I say it's saved my life, it's not hyperbole and I not trying to sell anyone the idea of following mg path. But we DO know that, had we listened to the long list of voices who spoke of my imminent demise were wrong. They were wrong, at least in part, because we refused to receive  their words. 

Yes, I should be dead. But I'm not. I'm celebrating the  ninth ALS Awareness Month since my diagnosis. Not in spite of the many people who heard the acronym "ALS" and translated it as "death sentence". We're convinced I'm here because those voices became irrelevant to our daily lives and we've made informed decisions, like the decision to change to Liquid Hope. 

But mostly, I'm here because my body and soul are being nourished by the word we've become associated with - Hope.

No matter what trials you face, There's always Hope. 

How Hope Helps Us Celebrate My ”Terminal” Disease

Please this article on The Huffington Post at: http://www.huffingtonpost.com/entry/5861473ee4b04d7df167d09a?timestamp=1482774035244

Another Year To Be Thankful For

THIS has been a year to remember. Truly another year for which to be thankful. I speak and write often of perspective. Linda and I chuckle at the social media rants we all post, complaining about a "tragedy", the #%**<>! who cut us off at the intersection or a "horrible day". We all do it. Social media has been the Great Enabler of the Whining Class. And I won't even mention the build up to and post election rants from both sides. Really. I won't mention it.

When we're honest with ourselves - and that's tough stuff, being honest with ourselves, if we can apply some perspective to the day, the week and even the year, few things are as bad as we say. In this season of reflection and thanks perspective is an important tool to have in our spiritual tool belt. So, with my perspective hammer in hand, here are the highlights of another year for which to be thankful.

Obviously, it starts with family and friends both near and far. Without them, this all makes no sense. 

For us, this year has been overflowing with material blessings. Chief among them being the "Hopemobile II" given to us by Donna Dourney and her team at HARK (hark-als.org). We were the first recipients of HARK's "Hopemobiles .For pALS" initiatives.  Stunning generosity.

Then, there was the repair of our crumbling garage floor. An initiative started by President Jim Dlugos of St. Joseph's College, where our youngest, Matt, is a Junior. After a visit to our home, President Dlugos called Matt Cook, President of AlliedCook Construction which has a more than year long project going on campus. Matt visited us and without blinking said "We've had a good year. We'd be happy to fix this for you."  Stunning generosity again.

 Of course, we've had smaller blessings, some monetary and many random acts of kindness throughout the year. Too many to list for fear of leaving someone out but we're thankful for each and every one. From gift cards to mysterious flower deliveries, from food and desserts to freshly picked fruit left on our steps, we're thankful for it all. Oh! (See...I told you I'd overlook someone). We had people like .Greg and Jennifer Cushman show up and 

mow our lawn. That was, until our neighbor, Steve .Swan, asked if we would mind if he started mowing our lawn when he did his. Ummm...yes please! 

As far as The Hope-JG Foundation is concerned, we've been blessed to have an incredible team and Board members helping make our second annual golf scramble better than the first year. We're thankful for the companies and individuals who sponsored or donated to the scramble. And we're always thankful to donors throughout the year. We still need to grow our team so, if you have a heart to volunteer, call or email.

So much to be thankful for when it comes to the foundation. Innovators like Rupal Patel (VocaliD.co) and Robin Gentry McGee (http://functionalformularies.com/) who bless us with their collaborative spirit and support regularly. We're thankful for state legislators like .Drew Gattine and Richard Malaby for their gracious support of our persistent testimony before the  Joint Legislative DHHS Committee. 

We're thankful for future .Innovators like Dexter Ang of MIT who visited us multiple times and blessed with alternative ways of communicating. Dexter and his team at Pison Technologies have developed an exciting skin sensor device which enable paralyzed individuals to control external devices by moving a single, small muscle.

And finally, with November being Caregivers Month, I'm eternally thankful for the love of my life. Linda has been doing more the double duty since before my diagnosis in 2007. With me traveling so much for work, she had boot camp type training for what we would face with ALS. She's become a Mrs. Fix It, soccer and basketball Mom, Nurse, yard maintenance worker and so much more. No one can truly understand the pressures she has borne but, as the adage goes, diamonds are lumps of coal that have endured tremendous pressure. Thank you for being my diamond, Linda. I'll love you forever and a day.

Happy Thanksgiving everyone. I wish joy, peace and perspective this holiday season. 

Nutrition and ALS: An Interesting Follow Up

Two days ago I posted a blog about sugar. It's been hand down our most read, shared, retweeted and talked about article to date.

This morning, before Linda and I got mired in yet more paperwork, I stumbled upon this article on the Harvard Health Publications website titled "Supplemental nutrition drinks: help or hype?"*

While the article addresses supplement drinks targeted for the broader market, it also clearly addresses formulas intended for specific medical needs including those who can't swallow. In my time chatting with others about feeding tube formulas Boost and Ensure have been on the list for some while Jevity and Osmolite, designed primarily for use with feeding tubes are also mentioned. I found these two paragraphs of particular interest (emphasis added):

"Supplemental nutrition shakes contain more than just healthy ingredients. “You may be getting more sugar than any of the other ingredients,” says Stacey Nelson, a dietitian from Harvard-affiliated Massachusetts General Hospital. “But if you can’t eat and that’s the only food that’s palatable, it’s better to get the calories.” Dr. Salamon agrees. “In that case, substituting one meal a day with a drink won’t hurt.” Both experts warn that people who can still eat may be risking too many extra calories by consuming the drinks. That can lead to weight gain and a list of complications associated with obesity, such as high blood pressure and diabetes.

Equally concerning is that nutrition in a can isn't the same as nutrition from food. "Even if they're fortified, they still won't contain all of the nutrients a whole food source would," says Nelson. Dr. Salamon questions the types of vitamins and dietary supplements in the drinks. For example, some include selenium. "It's not proved that we need selenium," she says."

Wait...we're talking about the same formulas and supplement drinks millions of Americans on feeding tubes are using as their primary source of nutrition, right? So, how is it we're cautioning people to limit their use of these products because of the risk of obesity and diabetes while sending new feeding tube patients away with cases of the same formulas as their primary source of nutrition?

The saving grace, if there is one, is this article dates back to 2013, before (at least I was aware of) any widespread discussion of this topic in the ALS community.

Yet, the question remains: Why are feeding artificial, sugar laden formulas to the sick, frail and elderly? The cynic (and business person) in me says "Follow the money!". And that default thinking may be correct. The financial website Research and Markets on May 11th of this year issued a report titled "Clinical Nutrition Products - Global Strategic Business Report 2015: Rising Incidence of Chronic Diseases to Kindle Markets".**  Like the Morgan Stanley report in my last article, this points to a global investment opportunity in, among other areas, enteral nutrition.

What incentive is there for a Nestlé or an Abbott (and I pick on them because they are market leaders) to provide "food as medicine"? The formulas they make are cheap, high margin products. , organic, non-GMO whole food formulas, like Liquid Hope, require a more thoughtful, compassionate and patient centered approach. An approach, much like the Green House model we will use in our ALS/MS Residence that places the patient first.

Let's hope that families, advocates, patients and the handful of clinicians who have already recognized the importance of nutrition for healing, will initiate a grass roots effort to educate Doctors, Nurses, Nutritionists, Dietitians and even Legislators. To demand choice. To demand information. To demand sustenance for the weakest among us.

But people need to care. People need to do the tough work of educating themselves, of questioning your Doctor. The uncomfortable work of saying "No. There's a better way."

Do the work. Reap the reward.



*Harvard Publications Article: http://www.health.harvard.edu/staying-healthy/supplemental-nutrition-drinks-help-or-hype

**Research and Markets: https://globenewswire.com/news-release/2015/03/11/714246/0/en/Clinical-Nutrition-Products-Global-Strategic-Business-Report-2015-Rising-Incidence-of-Chronic-Diseases-to-Kindle-Market-Growth.html?print=1

Perspective: An Observation

"Tragedy is when I cut my finger. Comedy is when you walk into an open sewer and die." - Mel Brooks

Having ALS certainly doesn't give me a corner on perspective. But, over the seven plus years since my diagnosis, I've met many people who have been told they were going to die. Some are still here, others have, in fact, passed on. I can guarantee you that for each of them, a "terminal" diagnosis was a perspective changing event.

How receiving that news changes one's perspective varies by individual. Nature, nurture, life experience, training, personality, faith (or lack of), religion (different than faith), social status, etc., all play a role in shaping our individual perspective. Some people become more resilient, some crumble. Some accept the news with grace, go about getting their affairs in order, some begin bull riding, cliff diving and savoring life. Still others just take each day as it comes. 

Social media has become a wonderful platform for an increasingly self indulgent world. Sure, it can keep friends and relatives separated by distance more connected. Just this morning I sent a birthday greeting to my Cousin in Indiana. However, more and more often, social media has become a platform for the emotionally needy to whine. There. I said it. Get a grip, folks. More accurately, get some perspective.

We're whining about the snow, the cold weather, our kids, our spouse, our best friend, our job, the President and how tired we are. Meanwhile, in the Middle East, a 6 year old girl is having her head cut off by a stranger, there are people in Africa dying of HIV and there's a homeless guy in New York City who would take your "crappy" job in a heartbeat. There are people in North Korea picking thru garbage dumps for food because their "President" isn't held accountable to anyone. There's a 10 year old girl who has been sold into the sex trade somewhere.

When I see social media whiners, it makes me sad - because it usually comes from good people. People who are better than what they are Tweeting, positing or Instagramming. Social media has made it far too easy to thoughtlessly tap out our emotions on our phones and hit "Send". I can't help but believe how often we'd post differently if there was an hour delay before our posts went through, followed by a display of what we wrote with an "Are you sure you want to post this?" pop up.

What a world we could make if, for every selfie, for every whining post about what previous generations simply considered to be the trivialities of life, we substituted a genuine act of kindness for others. If we focused on others instead of ourselves. 

Everyone's entitled to a bad day. No question about it. But do we really need to share every little bump in the road with the world? Norman Vincent Peale said: "The more you lose yourself in something bigger than yourself, the more energy you will have." I don't now about you, but I can always use more energy. The question is, how do we choose to spend it? Whining, or lifting someone else up?

I joked with our visiting nurse last week that I was going to have bumper stickers made that read: "Perspective - Get Some". I think I really will.

Now, go surprise somebody with an act of random, unexpected kindness. Guaranteed, you won't feel like complaining after.

ALS: No a Time for Fear or Small Thinking

     

We just finished our first Board Meeting of the year for the foundation. It was a bit overdue. We had so much to discuss that we sometimes strayed off topic and didn't really cover everything we should. We all agreed a second meeting in the next few weeks is due. Sitting here with some music playing, it occurred that one thing was clear: this is a passionate group of people.

In my work life, I insisted on two things above all else: passion and commitment. Those two traits trump knowledge, money or even talent. Passion and commitment are the crucible in which big dreams come to life.

I speak of big dreams because there are those who say (and more often it's unspoken, but no less palpable) that our vision to build a world class ALS/MS Residence is impossible. I call that "small thinking". 

Big thinking was never discussed in the house where I grew up. It went unsaid that, if you want to do something, just do it (I think Nike stole that from my Dad). The parallel topic that was discussed was the value of hard work to achieve your goal. "Nothing worth having comes easy." was a phrase I heard more than once. Dad would have loved the New England Patriots them of "Do Your Job" this year. I can honestly say I was never discouraged from doing anything. My parents weren't afraid to let me fail. My folks struck the perfect balance between being supportive and letting us learn the lessons of failure.

Families with ALS know this as soon as they hear the diagnosis fall from their physician's mouth. Fear isn't an option, and neither is small thinking. That's not to say the fear isn't real, you you either give in to it or you saddle up for the fight of your life - literally.

Two comrades in arms were in the hospital recently, fighting through tough different battles against our common enemy. Steve Gleason and Pete Frates, without question two of the highest visibility and most effective advocates in the ALS community today, have both demonstrated passion and commitment from the day of their diagnosis. Some might say it's because they were both high performance athletes but we know people fighting ALS who have never stepped foot on a field of play.

What binds the ALS community together is passion and commitment. There's a perspective and a focus shift that happens when a family hears "Dad has ALS, and we have no cure". At that moment, whether they realize it or not, they've become part of a larger family. At that moment, they become fearful, or fearless. At that moment, their world changes - forever.

It's no coincidence that the vast majority of fund raising for A!S is done by family and friends of the afflicted. And in the case of Pete Frates, Steve Gleason, Augie Nieto and countless others, the afflicted themselves. They share a passion that no families should be forced to endure this disease.

At our Board Meeting, we discussed the need for passion and commitment on our team. There are many smart, experienced people we could ask to be on the Board. But it only works if they have a real connection to ALS or MS or otherwise stared death in the face. If they've experienced that perspective shift. 

So...we're always on the hunt for passionate people. Our Advisory Panel,has been very helpful as have some unofficial advisors we know through the amazing ALS Facebook community. They all share the passion and commitment to help us achieve our goal. 

Fear? Not an option for us. Small thinking? No thank you. We dream big around here. We live in a world where miracles happen and dreams come true.

Want to help us too? Drop us a line at: info@hope-JG.org.

Donate at: http://hope-JG.org

Passion, Cooking and Perspective

We watched the movie "Chef" last night on Netflix. We laughed, we cried and we went wild over the food. Without a doubt, the best film I've seen in a long time.

It made me realize how much ALS has stolen that we've had to find "work arounds" for. Like cooking. I did virtually all the cooking in our house. It was a form of relaxation for me. I would come home, duck my head in the fridge and cupboards (if I hadn't stopped at the store to buy food with a menu in mind) and whip up whatever struck my fancy. The fall back was always Paśta Puttanesca (Hooker's Paśta, a dish the Italian ladies of the evening would make for American GI's from easily available ingredients). Linguine, Callamatta olives, fresh garlic, onions or shallots, basil, capers, fresh plum tomatoes and whatever else we might have around like roasted red peppers. Everything is chopped up and goes in a big sautée pan with EVO. Tomatoes and little white wine go in last to make it a bit "saucy". Some freshly ground pepper, organo, thyme and the cooked linguine gets tossed in. A loaf of fresh Italian bread from Botto's bakery to soak up the sauce, a bottle of wine and freshly grated Parmesan or Romano cheese and you're done. Total time about 30 minutes. 

Linda's Facebook post last night struck me, not only at how much ALS has taken, but how God has replaced everything with an appreciation of the little things I used to do without thinking - like looking in a mirror. I miss the smell of fresh cut grass I would clean from under the deck of the mower. The feel of icy stream water rushing past the legs of my fly fishing waders. And yes, even the smell of trash as I'd bundle it up and carried it the 150 feet up our driveway to the roadside.

Fly fishing, hiking, camping, cooking (at home and over an open fire), golfing, coaching kids and my work were all passions. ALS has stolen those but it's made me rediscover how head over heels in love I am with my wife, how gracious our God is and the importance of giving back no matter what your circumstances.

Much like main character in "Chef", Linda and I have had to discard some things we once thought important and we've reinvented our relationship and the way we live life. We've discovered that nothing is permanent in this life. But that's not a bad thing. Smell the roses, kiss the one you love (while you can still pucker - I can't:/) and savor each moment as if it won't come again. Bon appetite.

Whatever condition we are in...

“Whatever condition we are in, we must always do what we want to do, and if we want to go on a journey, then we must do so and not worry about our condition, even if it's the worst possible condition, because, if it is, we're finished anyway, whether we go on the journey or not, and it's better to die having made the journey we're been longing for than to be stifled by our longing.”
― Thomas Bernhard, Concrete

We've lost several members of the ALS Community over the past few weeks. Some went out fighting. Others simply said "Enough." Very personal choices which deserve to be honored and should never be judged.

It's commonly said that "Life is a journey". I respectfully disagree. Life is only a journey if you live it. And you you can live life even if you're "terminally" ill. I would argue that many of the people I know who are taking the most prolific  journeys - literal, spiritual, artistic or otherwise - are individuals whom Doctors have told, "There's nothing we can do."

Steve Gleason is an amazing example of an individual who hasn't let ALS define him. Steve has been to football games with his old Saint's team mates flown to Peru to climb Machu Pichu (with a little help from his friends), been to Microsoft to inspire and press their innovation teams to improve communication hardware/software for the disabled. He's even attended the most recent State of the Union address. Steve Gleason is living his motto "No White Flags". 

The Hope-JG Foundation is rooted on the premise that every family with ALS matters. We know technology can make a world of difference for people with neurodegenerative disease. As our friend Steve Saling says, "Until there is a cure, technology is the cure." 

Technology can enable a paralyzed person to paint, create website or make a movie. It can enable a speech impaired person to make phone call, communicate with their Doctors and tell someone "I love you." Technology makes it possible for the disabled to take journeys like anyone else (albeit with a little extra effort).

Won't you join us? We intend to see an ALS/MS Residence built in Maine. It will have state of the art technology to provide the residents with an  unparalleled level of independence. The Residence will provide organic, whole food nutrition for those who can eat by mouth and those on feeding tubes. It will be cleaned with non-toxic cleaning agents. 

No matter what journey families with ALS are on, we will be there to support them. 

To donate go to: http://www.hope-jg.org/#!donate/c1ghi

To find out about the ALS Residence Initiative go to: http://www.alsri.org

The Perfect One

“He’s not perfect. You aren’t either, and the two of you will never be perfect. But if he can make you laugh at least once, causes you to think twice, and if he admits to being human and making mistakes, hold onto him and give him the most you can. He isn’t going to quote poetry, he’s not thinking about you every moment, but he will give you a part of him that he knows you could break. Don’t hurt him, don’t change him, and don’t expect for more than he can give. Don’t analyze. Smile when he makes you happy, yell when he makes you mad, and miss him when he’s not there. Love hard when there is love to be had. Because perfect guys don’t exist, but there’s always one guy that is perfect for you.” 

― Bob Marley

After knowing my wife for over 38 years, this quote struck me in a way it certainly would not have 38, or maybe even 10 years ago. We've lived through the typical "struggles" of life, raising two children, building two houses, quarrels over important and petty things, paying bills, changing jobs, death of friends and relatives and events that were (we thought) unique to us, battling foreclosure, getting pushed out of a business I helped to build and even seeing my Linda laying unconscious on the floor after being hit by an errant baseball throw - a week before giving birth to Matthew. Turns out, none of those made us special or unique. That's life. And none it prepared us to deal with ALS.

Much of life is about expectations. How we set them, how we follow through with them and, as this quote points out, the often unspoken expectations we cast on others. I've been so far from perfect over the years, I'm amazed Linda has stayed with me. I know the expectations I set for her of me early in our marriage weren't realistic. And neither were my expectations of her. I guess that's what they mean when they say "nobody's perfect.

Anyone going into a relationship would be well served to take this quote to heart. Post it somewhere where you'll see it every day. Linda and I have made it through some very difficult times that would have crushed most marriages. Reading this quote made me realize that it's not because we're able to ignore each other's faults, but because we've always accepted them (and again, I have many more than she has).

We're not perfect - but we're perfect for each other.

I love you Linda and I'm thankful every day that you know my faults and make me a better man.

Caregivers Month: Affirmation and Reality

“Affirmations are our mental vitamins, providing the supplementary positive thoughts we need to balance the barrage of negative events and thoughts we experience daily.”

― Tia Walker, The Inspired Caregiver: Finding Joy While Caring for Those You Love

Here's something I'm awful at: Affirming and edifying my caregiver, who also happens to be my wife, consistently. 

Sure, I've written some Facebook posts that express my appreciation. What I'm confessing to is, when it's just the two of us, not being more affirming in my behavior - and the fact that I can't speak is no excuse. Let me get real here, and probably a bit too graphic for the sensibilities of some, so apologies in advance. 

It's an understatement to say ALS is a humbling disease. After we rejected the confirming Doctor's prognosis of "terminal", we had to deal with stumbling and falling in public, followed by walking with a cane (and still stumbling), then the move to a scooter (which my 120 lb. wife had to wrestle in and out of my SUV) and finally a wheelchair, which meant Linda had to learn to drive a cargo van.

Then comes eating, especially out of the house. Linda and Matt both became used to the stares as people noticed me fumble, choke on and spill food. As it became increasingly difficult to manipulate a knife and fork, people staring as Linda patiently cut my food into manageable bites as her own plate got cold. I must say, Matt developed the "What chu looking at?" glance down to a science:) Now that I have my feeding tube, we eat out far less. When we do it's sandwiches or burgers in the car, or take out at home.  I can still take in some things by mouth. Burritos are a high calorie treat and eating at home means Linda can cover me in a rain poncho to preserve my clothes. Preventing the public spectacle that would create if we were anywhere but home.

And the bathroom...sigh. Over the years, as my ability to ambulate has decreased, this is the area where caregivers like Linda really earn their stripes. I need to be constantly on guard for the first sign of an urge to need the bathroom. We decided earlier this year, after more than a few accidents which tested our collective patience (Matt included), that having a urinal handy by my recliner is easier than trying to transfer to my wheelchair for the  20 foot trek to the bathroom and the struggle to stand me up. Linda has had to change more than her share of urine and poop covered clothes, strip me down, wash me off and dress me again. That's the stuff people don't see when I roll into a room all clean and neatly dressed.

No one sees the ugly, practical side of choosing to live with ALS. In many ways we protect others from it by not talking about it. (And this article shouldn't be mistaken as a plea for sympathy or a public complaint. It's merely intended as a peek behind the curtain of our lives.)  

We've chosen not to disengage from interacting socially. We respect and honor those who choose a more cloistered existence but, for us, the best way to raise awareness is to let people see: 1) What ALS does to the body while leaving the mind intact, 2) That it's possible to enjoy life no matter what, 3) That my affliction isn't an excuse to not help others. And, as little credit as she gets for it, Linda has been a major part of #3. The same heartfelt mercy and compassion she pours out on me every day has continues to be poured out on others in small acts of discreet kindness and in some major, almost supernatural ways few would believe if they knew, given our financial and physical circumstances.

October is National Caregivers Month - and it's not specific to ALS. Every day, whether it's a broken leg, an aggressive form of cancer or one of millions of possible afflictions, Moms and Dads, Husband and Wives, Sons, Daughters, relatives, friends and strangers are pouring out their hearts to people in need of care. They wipe noses and drool covered chins with a knowing smile. They empty urinals and bedpans discreetly. They rub lotion, wipe up spills, comb hair and brush teeth. They do a million little things without being asked and ten million more we ask for. They rarely get a full meal. Sleep comes in chunks of minutes not stretches of hours. They are angels on earth and God smiles every time they act. He smiles often.

MY angel is also my wife and my best friend. She is the embodiment of our marriage vows "In sickness and in health". There is no way to express how much I love her. Not for what she does, but for who she has grown to be over these seven long years. Years that have tried our combined sense of patience, humility, humor and faith. Together, we've touched the face of God and we've felt the breath of Satan on our necks. But it is always Linda who silently goes about the business of lovingly, diligently and prayerfully caring for me. And Satan can't overcome that kind of love.

Hug a caregiver this month, and turn it into a weekly habit throughout the year.

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

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

Time for Diplomacy is Running Out: CMS is Wrong

We posted an article not long ago titled "Advocacy: Do New Medicare Rules Violate The ADA?". To date, it's our most popular article and most retweeted one. Our friend and comrade in arms, Steve Gleason posted a similar article on the Team Gleason website recently. http://www.teamgleason.org/letter2/ In his post, Steve said: "My advisors don’t want me to put it this bluntly, but it needs to be said. People, who want to be productive, are being denied basic human rights, and Medicare is most likely violating the Americans with Disabilities Act...".

Steve is correct - tactically and morally. The Hope-JG Foundation, along with groups like Team Gleason and hundreds of other individual advocates, continue to work within the legislative system with Congress. We will continue that effort but it requires the kind of political balancing act and diplomatic parsing of language that people with ALS, who have a relentlessly progressive disease, cannot afford. At some point, someone needs to stand in front of the bureaucrats at CMS and shout "ENOUGH!"

As early as 2010, the Department of Justice, in an Advanced Rulemaking document titled "Nondiscrimination on the Basis of Disability in State and Local Government Services; Accessibility of Next Generation 9-1-1", acknowledged in detail the increased use of Internet Protocol (IP) based tools such as email, text, and even video conferencing (like Skype and FaceTime). The DOJ's acknowledgement of the use of these now ubiquitous modes of communication should be a big deal to anyone concerned about CMS' current archaic, arbitrary and cruel position on the use and coverage of SGD's. The DOJ oversees the Americans with Disabilities Act (ADA). As the enforcement body responsible for the ADA, we feel they should be involved in this discussion and should be reviewing CMS' standing rules.

With all due respect, PALS don't have time to wait for the legislative wheels to churn. People with ALS are literally in their last months of life and, if CMS' current position holds, those individuals won't be able to send an email to a son or daughter far away. They won't be able to write a letter to their Congressional reps. They won't be able to say goodbye to anyone who isn't in earshot. All because...well, we don't know because CMS won't give a specific rationale.

NOTE: We are NOT asking CMS or the American taxpayer to pay for internet access or additional functionality. The irony of the new rules is that they never did. "Unlocking" devices has always been a transaction between the SGD vendor and patient.

Yup...the time for diplomatic talk is over. Time to make some noise.

You can call or write your Congressional reps and make some noise about this:

http://www.congressmerge.com/onlinedb/index.htm

Read the latest CMS Rulemaking document:

http://www.cgsmedicare.com/jc/pubs/news/2014/0214/cope24807.html

Read the 2010 DOJ document which clearly recognizes the increased use of IP based tools for communication:

http://www.ada.gov/anprm2010/nextgen_9-1-1%20anprm_2010.htm

Thankful, Rested And Looking Ahead With Anticipation

I took a brief hiatus from posting here after an intense couple of weeks pushing for the (successful) lusovu/Eyespeak Kickstarter campaign. Many thanks to the over 600 people who donated and to the hundreds who Tweeted, posted, emailed and called on their behalf.

Linda and I have spent the last couple of days outside at the lake and ocean. Nothing like water, Maine air and sunshine to clear the cobwebs and refresh the soul.

So...where do we go from here? We have our two other Innovators to support. Rupal Patel's VocaliD and John Costello both have different needs but complimentary services. We'll see what we can do. For more about them, go to:

http://www.hope-jg.org/#!innovators/c23ff

Next, we're still in need of volunteers. People with experience in event planning and an accountant willing to offer some Pro Bono guidance are needs as I write this, but anyone willing to roll up their sleeves will be welcome with open arms.

Linda and I know the foundation is on the proper course and we're trying not to be impatient. After all, we just launched on May 6th. Still, we are ever cognizant of the days that pass - hard not to do when you have a "terminal" disease. Our hearts are set on getting an ALS/MS Residence built in Maine while our minds are conscious of the enormity of the task.

Regardless of where this new adventure may take us, we are humbled by those who have joined us, thankful for those who will and mindful of the thousands of families battling neurodegenerative diseases of every kind.

If YOU have an idea for fund raising, assistance, networking relevant to our mission (see: http://www.hope-jg.org/#!about_us/csgz) or want to volunteer, email us at: info@hope-jg.org.


Now...BACK TO WORK!