What's In a Name? - Liquid Hope

After ten months of being on a feeding tube and taking in the prescribed corn syrup based, semi-synthetic formula, we finally received approval from my Medicare Advantage provider to switch to Liquid Hope. According to its manufacturer, Functional Formularies Liquid Hope is: "... is a FDA Approved nutritionally complete, organic, real food, whole foods enteral formula and oral meal replacement."

While there's some obvious irony with the name, for Linda and me finding Liquid Hope was more than just a blessing for us. Finding Liquid Hope was finding another group of dedicated, passionate people who know the status quo for ALS families and so many others cannot stand. 

That's why we are ecstatic to announce that we are adding Functional Formularies/Liquid Hope to our fine group of Innovators. 

For us, it's not what's in Liquid Hope, like organic chick peas, garbanzo beans, turmeric, sweet potato, garlic, kale, peas, carrots and broccoli and other good-for-you, yummy stuff all mixed with
dose of love and compassion. It's what's missing. Things like: MALTODEXTRIN, HIGH FRUCTOSE CORN SYRUP, SUGAR, CALCIUM CASEINATE, SOYBEAN OIL, POTASSIUM CITRATE, SOY FIBER, PARTIALLY HYDROLYZED GUAR GUM, MAGNESIUM CHLORIDE, CALCIUM PHOSPHATE, HYDROXYLATED SOY LECITHIN, SODIUM ASCORBATE, CHOLINE CHLORIDE, SALT, SODIUM CITRATE AND MAGNESIUM PHOSPHATE. Liquid Hope is also soy, gluten, dairy and corn free. It has no Genetically Modified Organisms (GMO's) AND it comes in BPA free packaging!

Robin Gentry McGee, the founder and CEO of Functional Formularies, asked a question we should ask when it comes to our healthcare: Is there a better way? Medical practitioners and hospital Nutritionists and Dietitians need to re-examine (and maybe do some soul searching) on the issue of which enteral formulas they prescribe for their patients. Is a "semi-synthetic" formula, loaded with cheap carbs, sugars, artificial vitamins and preservatives good for anybody? Before Liquid Hope, there were literally no alternative. Now there is one, and it's Medicare approved, so there's no excuse.

Yup. As word spreads about Liquid Hope, the status quo is being shaken. There's a paradigm shift in how patients and their families are thinking about what is going in the tube. Patients with cancer, ALS, neonatal and pediatric patients and otherwise immune compromised patients need real food to fight their battles. No more should any patient accept the term "maintenance" regarding their care. Every person fighting an affliction deserves the chance to thrive. That's the theory behind the ALS/MS Residence we intend to build in Maine. That's the hope offered by our latest Innovator, Functional Formularies.

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

The MONSTER has a New Nemesis

Many of the people I've met with ALS often refer to it as The Monster. It's a way of encapsulating what we all know about the dark side of the disease in simple terms. 

The Monster has no shape or form, it looks different on the shoulders of everyone it attacks. The Monster has no voice. It's deathly silent, in spite of the thousands of voices it steals. The Monster comes without warning. It's victims are young and old, rich and poor, athletes and couch potatoes. Sometimes, The Monster devours it's victims in months, sometimes a few years, sometimes it toys with them for decades. 

There have been millions of White Knights over decades, dedicating themselves to finding where The Monster lives, how it moves, why it does what does. These Knights wear lab coats instead of armor. Their weapons are test tubes, beakers and petrie dishes. Whenever one of the Knights shouts to the others "I've found it's tracks!" so far, it's been a dead end.

The Knights have sponsors, mostly the friends and family of The Monster's victims. The sponsors have done much to feed, clothe and arm the Knights. Begging, appealing, selling cupcakes, doing bottle drives and even digging into their own dwindling funds to keep the Knight's quest to find The Monster's lair moving forward.

In the past two months, a Crystal Knight has joined the fray. This Crystal Knight has a heart as cold as ice when it comes to his loathing of The Monster. Yet, this warrior brings joy and comfort to the afflicted and their families. He even has the ability to recruit previously disinterested parties to follow him into battle, sponsoring the White Knights, comforting the afflicted and standing with families.

The Crystal Knight has changed the battlefield forever. The Monster is on the run and spirits of its victims, their families and the Knights are high. People continue heeding the call to arms of the Crystal Knight. 

But this is a cautionary tale. The battle goes on. There will be difficult days and more casualties ahead. The key to winning the battle and sending The Monster to the bowels of hell is the people who have answered the Crystal Knight's call. They MUST stay engaged! Without the level of excitement, compassion and support we've seen in the past two months, the battle will tilt again, in The Monster's favor. Please don't let that happen!

Here are some links to keep your mind, spirit and heart in the battle.


http://www.hope-jg.org/#!get_involved/c8k2

http://www.als.net/ALS-Community/?f=h



THE END

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.

Ice Bucket Challenge A Great Awareness Tool

http://youtu.be/eJXo2Q18SXU

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

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

For the uninitiated, this how it works:

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

-  They post it on Facebook or Twitter.

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

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

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