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.