A Happy Birthday Testimony For My Wife

“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. That’s why I’m posting this on her birthday. Out of mad respect of what she does for me and for ALS families everywhere every day. 

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. Now, thanks to Donna York Of HARK, she drives our second ‘Hopemobile’ and me to events, meetings and Doctor appointments. That includes driving to Boston for appointments at MGH and Spaulding to troubleshoot my weakened neck and with that, revisiting my wheelchair configuration. Driving to Boston is easy. Driving to Boston, after waking at 4 AM to get me toileted, cleaned, pack my food and travel necessities in the van, get herself showered and maybe fed and be sure we hit the road in time for the two hour trip is exhausting-even with help. And the ride home with me often asleep in the back, after a stress-filled day (even visits where everything clicks are stress-filled).  Linda often is wiped out after Boston trips, but she gets up the next day and carries on. 

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 "Whatchu looking at?" stare 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. 

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. Earlier this year, we realized that the tenuous method we had developed to get me on the toilet was simply too dangerous for both of us. Over 12 years we’ve become adept at adjusting to new hurdles presented by the progression of ALS.  So, we’ve adapted to this challenge too. I now use our dining room as a bathroom. I’ll spare the details but they can be found in our May 31st Blog at: http://hope-jg.blogspot.com/2019/05/

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 continued 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.

The most significant accomplishment of 2019 was  certainly getting Linda’s Caregivers Bill signed into law by Governor Mills. Linda was the inspiration behind the bill. I say she was the inspiration for the bill with a bit of my tongue in my cheek. She actually bent poor Representative Patrick Corey’s ear long enough on our front landing to a point where she made her case with a   purpose few professional advocates posses. 

Every day, whether it's a broken leg, an aggressive form of cancer or one of millions of possible afflictions, Moms and Dads, Husbands 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 twelve 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 week, and turn it into a daily habit throughout the year. We recently had a group of friends, some of whom we’ve never met, show up and shower us with love demonstrated by flowers, chocolates, meals for Linda and hugs. They also showed love by cleaning our gutters, cleaning and organizing our garage, dusting,  vacuuming, taking down drapes and washing them and organizing our wall unit. At the end of a hectic afternoon, they gathered in the living room and prayed for us. That kind of support will sustain us for a long time.

Caregivers not only deserve our support, they deserve respect and care themselves. I’ll never be able to repay Linda for the sleepless nights, the emotional and physical exhaustion and the worry ALS has brought to our marriage. 12 1/2 years ago, when we thought ahead to this time in our lives, we thought we’d be traveling , reconnecting with friends and enjoying the fruits of our combined labor. Instead, we spend most of our waking hours focusing on keeping me going, some on dealing with the mountains of papers that come with ALS and the rest we spend on what has become our passion - helping other families fight “the beast”. 

I worked on this for awhile with the goal of posting it on her birthday, December 28th. If you will, please join me in wishing my dream girl, caregiver and wife and your tireless (and often far too quiet about what she does for ALS families) advocate, a very happy birthday. Drop her a PM, text her if know her number or comment wherever you see this posted. Happy Birthday Babe. Love you until the end of time.  😘⚓️💪🏼❤️❤️❤️❤️

Our Caregivers Bill in Maine

On June 28th of this year Maine Governor Janet Mills signed into law "Resolve, Directing the Department of Health and Human Services To Allow Spouses To Provide Home and Community-based Services to Eligible MaineCare Members".  The bill was inspired by my wife and Co-Founder of The Hope-JG Foundation, Linda Gregoire and was Sponsored by State Representative Patrick Corey. 

As many ALS families have discovered, Medicaid has a series of programs which fall under the umbrella of Community Based Services. Essentially, these programs encourage and enable families to keep a homebound patient at home. The alternative is to place their loved one in a Long Term Care (LTC) facility which arguably has a negative impact on the quality of life of the patient and the famIly. And it saves the State millions of dollars because Mainecare doesn’t have to pay an LTC facility’s fees for a room, meals, supplies, etc. 

The specific program I’m in, for example, is the Participant Directed Option (PDO). I am allotted a specific number of hours each week,  to hire personal assistants for my care. Previously I could hire any relatives except my wife. Spouses are specifically excluded by ruling of the Centers for Medicare and Medicaid (CMS), unless the State applies for a waiver. Our bill does that. Until our bill was signed in June only 17 states had similar legislation.  

As with other terminal diseases, ALS impacts the entire family. Not long after my ALS diagnosis, I was forced to walk away from my small business. As a small start-up, I had no retirement plan or other benefits to bring with me. I was actually blessed to have my business partner buy my interest in the firm, relieving me of a massive debt load. SSDI is my only source of income. Furthermore, Linda has had to severely cut back her work schedule in order to direct my care and care for me during the many hours, particularly evenings and weekends, when no one else is here. Linda averages about 4 hours of sleep each night, partly to complete household chores which I used to do and also because I often wake at night with a toileting need which requires assistance.  ALS is a humbling disease for both patient and caregiver. 

 Every Family Caregiver like Linda is faced with massive physical, financial and psychological burdens, even with the extra hands which PDO provides. 

• The workload of Family Caregivers at least doubles, since the spouse is no longer able to "pull his/her share of the load".  In addition to the work she did to clean our house, laundry, etc., Linda now does home repairs, yard work and everything I did - including cooking for one. Not long ago, a component of my wheelchair came loose. Linda grabbed her now legendary purple tool kit and, in her pink pajamas at 10 PM, troubleshot the problem and made the repair.  .

• Family Caregivers invariably lose income, Social Security credit, health insurance (Linda hasn't thad Mainecare since our son graduated High School.. He graduated from college two years ago If she becomes ill because something that has been ignored over four years, my likelihood of survival decreases dramatically.  

• Her access to educational opportunities, to prepare for life after my eventual demise, are limited due to income and time constraints.  Family Caregivers deserve access to innovative educational opportunities  to prepare them to be productive, tax paying citizens after their caregiving days are done.  Without this kind of support, the.odds of Family. Caregivers becoming a beneficiary of the DHHS system increase dramatically.  What is the cost to the state of just 10 Family Caregivers are forced into welfare instead of being launched into the workforce?

Linda and I have been counseled by multiple Social Workers and Case Managers, to get divorced. “It’s only on paper.” they say. It is unimaginable to us, that the government not only tolerates, but endorses programs and benefits which encourage – and in some cases, leave married couples no choice other than, the dissolution of a marriage. .. Yet, in some cases it’s a matter of financial survival.    Linda could have health insurance and probably other forms of government assistance if we divorced “on paper”. I respectfully submit, if it’s just a matter of paperwork, any laws or regulations that require the dissolution of marriage in order to qualify for Medicaid,  be changed. It’s time for our social service rules, regulations and laws to align with the moral foundation of this great country.

Spouses of participants in  self directed home care programs, are de facto Natural Caregivers. With few exceptions, husbands and wives abandon careers, social connections, personal aspirations and financial security In order to care for their ailing spouse. They sacrifice all this and much more in exchange for an often thankless and always overlooked, 24/7 job. A job rooted in love, but personally physically and emotionally.all consuming – and in the process they-save their State money. 

Because of this dedication to their spouse and the personal sacrifice they invariably make, Family Caregivers should be able to be paid the equivalent of a fast food wage - the PDO pays $12.75/hour.  Linda has slept on our living room sofa for 5 years, which is the time I haven’t been able to get upstairs and in bed. She wakes with backaches and usually goes to bed with a headache. She does more physical labor by 11 AM than most people do all day. Unfortunately, Linda’s (while special to me) story is typical of Family Caregivers everywhere. 

We’re proud to have had a hand in this important legislation for Maine Caregivers. But it’s just a first step...stay tuned. 

    

There’s Always Hope-A #GivingTuesday Message

NOTE: The Hope-JG Foundation kicked off our #GivingTuesday Campaign (December 3rd) this week. As we move into the  “stretch run” for fundraising for 2019, I can think of no better message to send than this inspired Facebook post written by the love of my life and Co-Founder of the Foundation, Linda Gregoire. Please consider joining our growing family of recurring donors by visiting: https://www.hope-jg.org/donate

I’m letting John sleep in a little later today . He’s very peaceful despite the whooshing  sound of his trilogy (a machine that forces air in his lungs and helps get rid of CO2) it’s not his favorite way to sleep but it’s benefits are worth it. 

He’s  been working hard on several  projects and has required a lot of back and forth with emails, which as of late take more and more time and energy to compose. But with one good typing finger doing the work, he perseveres. I marvel as I see him sitting in his wheelchair hooked up to his feed,  continuing to be productive  in meeting the needs of others. I say that he does what he does not for “the praise or glory”...that is for God.  But because God’s given him, after almost 12 years, the strength to do what he does every day. 

John’s not alone. We’ve seen some of the strongest advocates for ALS  be those that are affected by the very same disease. Our Foundation is a means to fill a need we saw many years ago when we planted the seed of Hope-JG. When a thought crosses your mind and is buried in your heart, you know you need to nurture it and see where it will take you. 

It’s been 5+ years since we decided that we knew all too well the challenges of living with ALS and there must have been a better way to help those in need. It’s not an easy task always...heartbreaking most of the time to hear stories of the needs. Basic needs that are no longer “basic”. Accessibility in and out of the home. Accessibility to a bathroom, nutritious food once a feeding tube is placed. The ability to still communicate once your speaking voice is gone or the ability for a family to have a way to be transported and included in a family reunion. Once bound to a wheelchair these basics are no longer “basic”. They are challenges that need to be met with dignity and love from knowing hearts. 

Yes, we’re a Foundation with all the administrative, legal and financial stuff that goes with running a foundation. Thank God for our amazing Board. Ultimately we want to be the ALS family member that reaches out and comes along side a pALS facing these “mountains” and move those mountains. 

I watched yesterday as John emailed with a company we collaborate with that he pursued until  they caught the vision of how they could help. And later in the day I helped him Skype with another person we have worked with and now have a valued friendship with after seeing her speak on TedTalks. (She is creating “voices for those without voices”.) Then back to his email with one finger to coordinate a upcoming accessibility project for a pALS.

And that was just yesterday. I share all this as his proud wife, as I watched this morning a flood of ‘Likes’ to our foundation page (https://www.facebook.com/Hjgorg/). (Thank you!)  This is never about us...we can’t do this without all your support. This is also about what you can accomplish when a seed is buried in your heart,  no matter what your circumstances are. Able  bodied or challenged, pursue that seed until it grows and bears fruit. 

When John was diagnosed 12 years ago, I knew that wasn’t the end of our story. I knew it was an open door to walk through to see what God had in the other side for us. We refused to accept his life was over before its  time. God is faithful if we trust Him and give it all to Him. It’s been quite an experience and we’ve grown personally from it. We’ve walked along side those God has given us to help, sharing their needs and their hope...in what may appear to be a hopeless situation, there’s always hope!

 Unfortunately when you are diagnosed with a disease like ALS and you begin to have needs, that’s when some of the hardest battles start. The needs are great and Insurance doesn’t  always meet such profound needs. 

So as he wakes up and our day starts with “getting him going”, he’s ready to get back at it. You may wonder...why? Because once you know what this life with ALS is and you have the ability to do something, you must do your part to make this horrible disease easier. We are the tiniest cog in a huge wheel trying to change the disease. We have fellow warriors fighting for a cure, to change laws to try drugs that have the potential to reverse this disease. Others raising awareness and funds to support a cure. Foundations run by family members like ours trying to fight back when ALS walks in and tries to steal your life.  It’s all needed. It all helps. Every bucket of ice dumped,  every golf scramble attended, every fundraiser donated to could be the one that holds the cure or provides help that’s desperately needed. 

The one thing we’ve seen every time we’ve met a new patient is “gratitude” to those they have never met. If you’ve donated or helped in any way, thank you! While John and I may be the faces of Hope-JG, as many others like us are working to change ALS are the faces of ALS, it’s your generous hearts that have made everything possible. 

Thank you and God bless you. Today’s another day to change ALS, one project and one person at a time ❤️⚓️ There’s always hope! 

Linda Gregoire 

Co-Founder

The Hope-JG Foundation 

Life With ALS: Reality Check

..

ALS Awareness Month Day 28: Reality Check Warning - This is a challenging post to write as Linda and I try to put a positive face on everything. Linda didn’t want to share this at all   This isn’t easy or pretty. There’s a fine line between positivity and sugarcoating. This is the reality of ALS for us and other ALS families everywhere  

About 3 months ago, we were faced with the reality that trying to transfer to our downstairs toilet, which was always more dangerous for both of us than we’d admit, was now impossible. Another “new normal” was staring us, unflinchingly in the face.

Because I’m tube fed and my formula is Liquid Hope, a vegan, organic  real food formula, my bathroom visits are at least daily - so we had no time to waste coming up with an alternative. Linda is nothing if not resourceful. It took her minutes to to say “Let’s try this.” And we have - for three months.

The Dining Room where we’ve shared family holidays from Thanksgiving to Christmas and birthdays has become a catch all for over 11 years of insurance paperwork and foundation displays. The room that holds so many memories for our family, the table where our boys left Christmas cookies for Santa, has become what you see pictured below.

The routine: When the need arises, Linda preps the commode chair and wheels it into the Dining Room. She then puts on my AFO’s (leg braces) so I can stand.  I roll into the Dining Room, position my wheelchair facing the side of the staircase. Using the stair balusters as hand grips to lift myself to standing (with help from Linda). I stand,, Linda moves my power chair to one side, grabs the commode chair and rolls it in back of me, locks the wheels and I sit. After clean up, the process reverses. Obviously there is a lot more unsavory  clean up since we don’t just flush the toilet. That’s more on Linda and I’ll leave that to your imagination.. Don’t know how she does it - even though I see it every day.

I’ve said and written many times before, that ALS is a humbling disease. It’s humbling for the patient who, because of ever diminishing motor skills is able to do  less for themselves almost daily. But it’s humbling for the all  too often forgotten caregiver too.  Without getting too graphic,  think about what Linda needs to do clean me. Humbling for her. And for me, while I detest the continued loss of control, it reinforces to me the strength and the love she shows me – Every.   Single. Day. Powerful stuff, not for the faint of heart or the weak of spirit.

If you have relatives, friends, co-workers or even “church friends” you only see on Sundays with ALS, don’t be fooled by their smiles. And don’t be put off if they’re NOT smiling. Life with ALS is a daily reality check.

Want to help us help other Maine ALS families? Go to hope-jg.org& and consider making a one time gift or joining our growing family of Monthly giving partners.

We Are Thankful for 3 Amazing Women

            

 As we close out 2018 and move into a new year, we’re thankful for many things. We’re eternally thankful for every person who donated money of any amount. We’re especially thankful to every member of our growing $10 For pALS Family (https://www.hope-jg.org/copy-of-donate). $10 each month, multiplied can sustain our Helping Hands fund which provides a variety of needed items to families fighting ALS. Please consider joining. 
On a personal note: I’m humbled and thankful for breaking through the 11 year mark with ALS with my amazing wife, caregiver and Co-Fouñder Linda. There’s no question that I wouldn’t be here and this foundation wouldn’t exist without her tenacity, instincts, passion and boundless love. 

We’re also thankful for our seven Innovators   Each of these individuals brings a unique perspective and life experience to their individual area of expertise. They also share one common trait - a passion to help the hurting.

We’re particularly thankful that three of the seven Innovators are strong, visionary women. We were just notified that Robin Gentry-McGee, Founder and CEO of  Functional Formularies (http://www.functionalformularies.com/) was just named as one of 35 World Changing Women In Conscious Business (#27 in this article).(https://consciouscompanymedia.com/sustainable-business/35-world-changing-women-in-conscious-business-2019/). 

 A common trait Robin shares with her sister Innovators is refusing to accept the status quo for hurting people. All three have specific life experiences that were  “lightbulb moments” which inspired their innovations. 

For Robin, her Father sustained a traumatic brain injury and Doctors painted a bleak picture for his recovery.  He was in a coma and required tube feeding. During a hospital visit Robin read the ingredient list on her Dad’s
formula package. That was her lightbulb moment. The unfortunate standard of care in hospitals for tube fed formulas are formulas which are loaded with sugars, cheap carbs and artificial vitamins.

As a trained Chef who had worked only with organic foods, Robin knew instinctively her Dad needed real food to have any chance for recovery.  After much experimentation in her home kitchen Robin found a combination of legumes,  vegetables, oils, spices and other real food ingredients that replaced the hospital formula.  Her Father improved   So much improvement that the day cane where her Dad stood up and shook the hand of one of the Doctors who told Robin he’d never recover   The Doctor told Robin “What you done here is a miracle.”  Food as medicine - what a concept.  Robin launched Functional Formularies and over just five years has helped thousands of adults and children improve their quality of life with her products Liquid Hope & Nourish.  

Then we have Dr. Rupal Patel, Founder and CEO of VocalID (https://vocalid.ai/ ). Rupal was teaching speech language pathology  and associated curricula at Northeastern University when she had her lightbulb moment.  Rupal was at a Conference with other educators, clinicians and patients. When she heard conversations involving speech impaired patients “speaking” using devices pre-loaded with synthetic voices. It struck her that many of the patients, whether a  12 year old girl or a 55 year old man, were often using the same voice.  As Rupal says in her first TED Talk: “We  wouldn’t dream of giving a prosthetic leg of a grown  man to a young girl. Why then, the same prosthetic voice? I wanted to do something about this.” 

The result was the creation of a unique process of combining digital recordings of a healthy donor voice with any sound from the recipient/patient.  The product of the process is a synthetic voice that contains the “vocal DNA” of the patient with the vocal clarity of the donor. A voice that  is unique to that individual. A voice that makes them distinctive - again. 

Rupal has been recognized in a number of publications including  Wired, the Wall Street Journal, NPR and more. She was also recognized as a “Top Women in Cloud” by CloudNOW. (https://youtu.be/F-qwuG8Eweo)

Our newest Innovator is Julie Lineberger, Founder and CEO of WheelPad  (https://www.wheelpad.com/). Julie’s lightbulb moment came as a result of a tragic accident that left her Godson, Riley Poor, a tetraplegic.    After Riley’s rehabilitation he had a challenging time finding an accessible apartment. When he decided to buy a house, he worked with Julie and her husband Joe’s firm Linesync Architecture to make the home accessible   From the time of Riley’s accident to completion of the home renovations was three years. But not everyone in Riley’s situation is related to an architect. 

This experience caused Julie to work with Riley and Joe  to develop a solution for others who would find themselves in a similar position.  The result is WheelPad is an eco-friendly 200 square foot universally accessible modular addition (bed & bath) that can be temporarily or permanently attached to an existing home. 

Julie has been recognized as a Top Socialpreneur by  Leading Women Entrepreneur and Women’s Day Magazine  (http://blog.nj.com/leading_women_entrepreneurs/2017/05/the_top_25_leading_women_annou.html).

We are honored to be associated with these amazing women. We wish them all the best in 2019. We thank them for their collective passion, heart but most of all, for their friendship.        

S

Ten Christmases and Counting

December 17th, 2007

Ten years ago this December 17th Linda and i took a train from Portland to Boston to get the final word on a preliminary diagnosis given by a Neurologist in Maine. Ir had snowed the night before and the sun was bright In the frigid sky, creating postcard worthy scenes on the train ride.

The train was full of light hearted Christmas shoppers looking forward to a day of fun with friends and family. The train stopped somewhere in New Hampshire to de-ice the brakes and a spontaneous choir  of Christmas carols started. Linda and I managed half hearted smiles – more for the people around us than out of real joy. No one else knew our different agenda for the day. No one except perhaps the Conductor. He knew me by face from my many business trips to Boston.  The difference was on this trip I didn’t have my laptop case, Linda was with me – and I was walking with a cane. I’m sure he was accustomed to seeing families from Maine travel to one of Boston’s many world class hospitals for treatment  or a consult. He was particularly attentive and accommodating on this trip.

We got the diagnosis confirmation from  the Specialist at St. Elizabeth’s In a fairly dispassionate and matter of fact way. Delivered in a deadpan, almost casual style, the doctor said “Its definitely ALS. Unfortunately, it’s Bulbar Onset, which is the most aggressive form. You probably have 18 to 24 months. Max out your credit cards, get you affairs in order and do the things you’ve always wanted to do. And DON’T try any alternative treatments. Any questions?.”

Before we knew it, we found ourselves on the sidewalk outside the hospital entrance. It was then and there, in that moment when we could have dissolved into tears of despair, where all  63 inches of my  beautiful bride stood firmly between me and the forces of hell (and it would be the first time of many over the next decade). She stomped her foot on the frozen ground and shouted “No! That man doesn’t know what will happen to you! Only .God knows!” From that day to today, we’ve never accepted negative or pessimistic words from any man or woman

There are far too many stories to tell in less than a decent sized book. Stories of legitimate miracles. Stories of despair, frustration, laughter, joy and anger. (In spite of my public persona, I’m no peach to live with.)   But most of all,  we have stories of Hope. Not the watered down version of Hope we all often use. The “I hope I get a raise.” or  “I hope I win the lottery.” The Hope we hold close comes from the Bible. Hope is an expectation of good things to come.

Hope has become our personal mantra, in large part thanks to Linda. Except for infrequent hotel stays, she hasn’t slept in a bed in over four years. And it’s not a sleep sofa. She sleeps on the sofa cushions near my recliner where I sleep. She probably hasn’t had a full night’s sleep in over seven years. She sleeps with one eye open in  case I need a urinal or if my Trilogy alarms. It may be the cruelest part of ALS that caregiver spouses are on call 24/7. Even with the help we get, there’s always something she can find to do. Yet, she carries Hope with her like sword everywhere.

Caregiving spouses like Linda, literally have the weight of the world on their shoulders. Linda has a lavender tool kit I bought her a few Christmas’s ago. With that kit and some help from YouTube she’s repaired toilets, faucets, made car repairs ad more – all things I should be doing. And Hope is in her tool kit.

So if you have friends battling an incurable Disease, here’s what you can do: Take care of the Caregiver.

Help can take a variety of forms   ALS is a particularly isolating disease for Caregivers. Linda and I used to chat for hours. I haven’t spoken without typing first, for seven years. Small Talk is tough  when the spontaneity is losth.   A phone call to just chat or let the Caregiver just talk,  can be priceless. Offer help organizing a closet, or papers   The key is, be prepared to let them set the agenda. Come with Ideas but don’t add to the daily stress by dictating your availability.  Be flexible.

Yes, this year will be my tenth Christmas since Linda and I heard that doctor tell us I had, at best, two years to live. We’ve been blessed  for sure.  We’re also keenly aware of the constant cadence of time as we see posts, even today on social media, that ALS has taken another precious soul. Take heart my friends. Hope is real. Hope is yours. There is always Hope.

Ten years ago, eight days before my first Christmas with ALS, Linda stepped between me and the forces  of hell – and like so many other Caregiving spouses, she’s never stepped away.   If you know a Caregiver, give them a call just to chat or listen. Better yet, arrange a time for a brief visit…and give them a hug.

Merry Christmas to the love of my life and Caregivers everywhere

12 Days Of Hope Contest!

The Hope-JG Foundation is delighted to join out Innovator, Functional Formularies, in announcing their “12 Days Of Giving Hope” gratitude giveaway. Details below. If you or a loved one use enteral formula, this is your chance to win Liquid Hope for Christmas!  Spread the word and join us and Functional Formularies thank their customers and welcome new families to a Christmas Of Hope. Merry Christmas.

Check out the FF Facebook page at:

https://www.facebook.com/FunctionalFormularies/

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We are excited to announce the biggest Gratitude Giveaway we have EVER done! 

"12 Days of Giving HOPE!"

Our hearts are so full as we look back over the last year. You, Our Community of Hope, are so dear to us. We sincerely appreciate the time you take to share pictures, videos and updates of your loved ones with us

With our “12 Days of Giving Hope” it is our heart’s desire to give back to you.

At the end of each day from December 5th through December 17th, we will choose ONE winner to win and entire prize package that includes: (1) a CASE of Liquid Hope or Nourish, (2) a signed copy of Robin Gentry McGee's book, "A Turn for the Worst: Traumatic Brain Injury and a Daughter's Search for Answers", and (3) our ever-popular tote bag!

A total of TWELVE winners for this giveaway! To participate, please post a photo or video and tell us what you are grateful for. Winners will be chosen by Random.org.

BONUS GIVEAWAY! On the final day, a drawing will also be held from ALL of the submissions to win a 6 month supply of Liquid Hope or Nourish (limit 4 cases maximum per month)

As always, sharing your post/photo with us gives us permission to repost on Facebook and other social media channels.

Gratitude -- It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend." -Melody Beattie.

#GratitudeGiveaway

Thanksgiving Perspective

“Who’s around the table is more important than what’s on the table.” 

By Guest Blogger Linda Gregoire

I was asked yesterday by a caregiver of a new tube feeder how we handle holidays that are celebrated with food. We all want to do whatever we can for our loved ones with a feeding tube to make life easier and normal , so I really appreciated her thoughtful question . 

The last 10 Thanksgivings we’ve been faced with small incremental changes that we’ve adapted to because that’s what you have to do with ALS. I always say “if you don’t go with the flow, you get caught in the rip tide” if anyone has had the experience of a rip tide you know what I mean..... the more you try to fight it the worse it gets, if you trust and swim in the flow you’ll be safe. So this morning after I started John’s feed and he fell asleep peacefully while his tummy was being filled , I realized how at peace he is with his current situation. In the beginning with his new tube , we struggled until we got him on a healthy formula. He still ate for pleasure by mouth, so a bowl of .pistachio ice cream was eaten while formula was finding its way into his tummy. He had the best of both worlds haha.  

I think the two saddest days for him was when he could no longer eat steak,  one of his favorite meals . That came early on , as it’s so hard to chew. The second was about a year ago when he would sneak a hand cut French fry when Matt and I would have an Elevation Burger . He choked so bad I almost thought of calling for help.  Once the choking passed he looked at me and shock his head “no” . I asked no  more for now ..... or no more forever ? Tears welled in his eyes and I knew ....no more forever and we both cried. The one thing he still can take by mouth and never chokes on is a small piece of communion bread and a sip of “wine” (grape juice) at church and God willing he’ll be able to forever. 

So as Thanksgiving approaches , it made me think how we’ve handled the “Holiday  meal” .  We gather at my sister’s with as many family, friends and dogs as we can squeeze into her home ....which can be 20-25 people and up to 9 dogs . The food has been mostly grown/ raised  by my sister and brother in law which is a labor of love . It’s prepared with everyone in mind ....oyster stuffing for some and regular stuffing for the rest of us 😉.  We all share in bringing what we can . We enjoy each other’s company and catch up on life . Then we gather at the table , elbow to elbow , we remember our family that’s with us in spirit and give thanks for those we still have  with us to love . John is seated at the table with his own spot  and place card as he enjoys “his dinner”  too . He’s  the only one that has  his electronic device at the table because  it’s for speaking ......and he’s the self appointed one to keep track of the football game for the entire table 🏈. That’s as important as cooking the turkey haha . We chat , pass food, laugh and oh yes we eat . Thanksgiving dinner is more about who’s around the table then what’s on the table. We feed our bodies and enjoy the food , but more importantly we feed our souls with love and thanks for all we have.

So for all our tube feeders, join in the feast, give thanks and feed your soul on love and life ❤️ . This is what I’m grateful for everyday of the year not just the days of November....Happy thanksgiving to you all  and God  bless you all .

NOTE:  November 28th is Giving Tuesday. If you’d like to support the work of The Hope-JG Foundation supporting families with ALS this holiday season, please donate at: hope-jg.org or by starting a campaign choosing us as the designated charity. Happy Thanksgiving!

Don't .Blow Your Chance to Play!

Don't blow your chance to have a great day of.golf, food, fun and surprises all to support local families with ALS. Did you know the average annual cost of caring for a person with ALS is over $200,000? Help us in our ongoing effort to śhow these families their neighbors care  #play18forALS #hopein1. For more info visit hope-jg.org 

https://youtu.be/oxe9R-3SXDc

 

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

"I Speak Hope" - PLEASE GIVE AND SHARE!

I'll make this shorter than my usual blogs. The Hope-JG Foundation ( hope-jg.org) in collaboration with VocaliD (vocalid.co) is in the midst of a fundraiser named "I Speak Hope". The goal is to raise $30,000 to build and equip a state of the art digital recording booth. The booth will leverage the VocaliD platform to enable high quality donations to the Human Voice Bank and for voice recipients to provide a sample of their "vocal DNA". 

This is all about giving the gift of a custom crafted voice to speech impaired children, teens and adults. In this season of giving, YOU can make a difference. 

Why is this important? Check this out:

How do you help?

1. Donate what you can at: https://www.crowdrise.com/i-speak-hope/fundraiser/the-hope-jg-foundation

2.  Share this with friends, neighbors, co-workers and your employer and challenge them to match your donation. 

3.  Feel great about giving the gift of speech.

3.  Have a joyous and hope filled holiday season! 

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 for ALS Awareness Month - Guest Blog

Connections: What are we waiting for?

John Bagnulo MPH, PhD. - Director of Nutrition At Functional Formularies

ALS or amyotrophic lateral sclerosis is a disease centered around the loss of functional mitochondria in motor unit neurons. As these nerve cells lose their ability to generate energy (that’s what mitochondria do) and therefore the ability to stimulate muscle recruitment (required for coordination, movement, and muscle cell preservation), individuals with ALS suffer muscle loss, paralysis, and eventually the ability to swallow and breathe.

Although there is a somewhat broad spectrum of symptoms initially among pALS (people living with ALS), the symptoms most often overlap with other neurodegenerative diseases such as Parkinson’s Disease and Alzheimer’s, as well as with other frontotemporal dementias. While the focus of this article is with respect to the etiology of ALS and the best possible dietary intervention, please keep in mind that the other neurodegenerative diseases also having growing bodies of clinical evidence that illustrate the benefits to a similar dietary pattern.

Neurons are very unique cells. Unlike our muscle cells they are less metabolically flexible and are dependent upon carbohydrates or ketone bodies (more to come on these later...) as fuel sources.Because of their requirements and because of what the modern human diet looks like these days, our brains and the neurons that comprise them are almost always running on sugar. Some sugars are better than others when it comes to the effects on the mitochondria of these critical cells. Glucose burns much more cleanly, for lack of a better analogy, than fructose.

Unfortunately more than half of most sweeteners and added sugars are made up of fructose. When it comes to corn-based sweeteners the percentage can jump to as much as 60% fructose. Many researchers have shown what fructose metabolism does over the course of time to the mitochondria of all cells, it is axiomatic to conclude that it can only be worse in those cells that are even more dependent on sugar metabolism as they will be getting a greaterpercentage of their energy from sugars overall. If this is news to you and you have been told that not only “a calorie is a calorie” but also that “a sugar is a sugar”, you will definitely want to take a look at the research around fructose and mitochondrial dysfunction:

ihttp://www.ncbi.nlm.nih.gov/pubmed/26661172

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4529952/pdf/BMR I2015-895961.pdf 

http://www.ncbi.nlm.nih.gov/pubmed/25913123

Simply avoiding fructose is the first and most obvious step in giving our neurons and their mitochondria a chance to come up for air. That means not only avoiding sweeteners but fructose-rich fruits as well. Dried fruits and many fresh ones such as bananas, apples, and grapes are very high in their fructose content and should also be avoided with any neurodegenerative disease. I am always dismayed to find recipes included in dietary recommendations for pALS that are centered on chocolate syrup, ice cream, and numerous other rich sources of sugar. Not only will these recipes fail to prevent weight loss, they will also make ALS patients considerably worse.

The artificial sweetener aspartame is not a good choice either. There is a good amount of research to support the role of glutamic acid in some aspects of the disease. Aspartame contains high concentrations of aspartic acid and it can act and disrupt neuron function in a similar fashion to glutamic acid. Then there is the research illuminating the degeneration of aspartame to methanol and formaldehyde, also potent neurotoxins. Are stevia and xylitol safe sweeteners? Possibly, but they shouldn’t be part of the long- term plan.

The key to arresting the neurodegeneration is in providing the neurons with the only other viable source of energy: ketones. Ketones are generated when we consume small amounts of carbohydrate and moderate amounts of protein. With this type of food consumption, the body has to manufacture glucose in an effort to produce supplemental quantities. In the process, ketones are a byproduct that can benefit all cells in the body with an incredible amount of supporting research. If we eat too many carb- rich foods it will quickly take us out of this ketone-generating zone, as will too much protein.

Ketones can also be generated from certain foods that contain a unique type of fat. In fact, there are only two or three foods that most humans have exposure to at one time or another in their life that can offer ketones as a result of their medium chain triglyceride (MCT) content. Breast milk, goat milk, and coconuts all contain significant amounts of MCTs and therefore can offer ketone production even outside of the ideal parameters of a ketogenic diet.

It makes too much sense that breast milk would provide us with a source of ketones at a time when brain plasticity and development is at its high point. In a similar way it makes too much sense that a ketogenic diet or even a diet rich in extra virgin coconut oil could provide an alternative fuel source to neurons that are otherwise compromised and made worse by their dependency on sugar.

In addition to helping neurons find a more viable source of energy, ketones also signal the cell to initiate autophagy. Autophagy is eventually critical to cellular function. It is a cell’s recycling program where those internal components that are no longer working properly are digested and the proteins and other salvageable components are reinvested into new organelles.

Unfortunately it takes more metabolically extreme circumstances for autophagy to happen. A cell has to receive a signal that there is either a protein or an energy shortage. Ketones are associated with the latter even in the presence of significant quantities of dietary fat. This recycling process creates room in a neuron for new, more functional hardware and can even stimulate biogenesis of new, healthy mitochondria. No drug or medication has ever been able to accomplish that.

This an important foundational component to an ALS, as well as to other neurodegenerative diseases, dietary intervention: get the sugar and the carb bombs out, bring the high quality saturated fats in, most notable extra virgin coconut oil. Even if you are overwhelmed by the thought of a ketogenic diet, simply eliminating sweeteners, fruit juices, most fruits, and other concentrated sources of sugar should be easy to grasp. Replacing omega 6 fatty acid-rich polyunsaturated fats with high quality coconut oil, olive oil, or grass-fed butters is also an extremely worthwhile change. Significant quantities of omega 6 fatty acids generate more inflammation and incorporating more polyunsaturated fats into the mitochondrial membrane just creates more instability and more oxidative stress where it is the most detrimental.

Too often care providers are resistant or unwilling to recommend these high fat, carbohydrate restricted interventions because they are not familiar with the cellular pathways involved in neuron   metabolism. Others confuse this dietary intervention and the mechanisms of ALS with “knowing the cause”. This therapeutic approach does not indicate that there is a proven environmental or genetic cause (although there are certainly some very plausible theories), only that there are definite pathologies in the mitochondria of pALS and that there are ways to improve the metabolic conditions within their neurons. Let’s not wait for another decade to pass before accepting a simple dietary strategy as at least part of the solution. No one should have to wait any longer as the research is becoming increasingly clear.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4776126/pd f/fncel-10-00044.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4780428/pd f/main.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1488864/pd f/1471-2202-7-29.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3245363/pd f/nihms320996.pdf

John Bagnulo holds a doctorate in Human Nutrition and Food Science from the University of Maine and a Masters of Public Health from the University of North Carolina. John has served as a nutritionist at Canyon Ranch in the Berkshires, Kripalu Center for Yoga and Health, and is a core faculty member of the Center for Mind-Body Medicine. Additionally he has taught a variety of nutrition and exercise physiology courses at different universities. A frequent lecturer on topics including heart health, detoxification, digestion, and sustainable agriculture, John is also a passionate mountain climber who has reached the top of Mt. Everest as part of a two-man team.

- See more at: http://functionalformularies.com/about/our-team/john-bagnulo#sthash.VpFB5bZR.dpuf