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

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 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.

Thankful for Liquid Hope

Let's play a game. What "food product", made by Nestle, contains the following ingredients?

WATER, MALTODEXTRIN, SUGAR, SODIUM CASEINATE (FROM MILK), CANOLA OIL, AND LESS THAN 2% OF MEDIUM CHAIN TRIGLYCERIDES (FROM COCONUT AND/OR PALM KERNEL OIL), 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, MAGNESIUM PHOSPHATE, ALPHA-TOCOPHERYL ACETATE, L-CARNITINE,  TAURINE,  ZINC SULFATE, FERROUS SULFATE, NIACINAMIDE, VITAMIN A PALMITATE, CALCIUM PANTOTHENATE, COPPER GLUCONATE, PYRIDOXINE HYDROCHLORIDE, MANGANESE SULFATE, THIAMINE HYDROCHLORIDE, RIBOFLAVIN, VITAMIN D3, CITRIC ACID, BETA-CAROTENE, FOLIC ACID, CHROMIUM CHLORIDE, BIOTIN, POTASSIUM IODIDE, SODIUM MOLYBDATE, SODIUM SELENITE, PHYTONADIONE, VITAMIN B12

Give up? An energy drink? Nope. Candy bar? Nah. Nespresso pods? Wrong.The answer is: Isosource 1.5, one of the Nestle products routinely prescribed by Doctors for people with feeding tubes - and there are millions of us. It's a huge and highly profitable market. My monthly bill for Isosource, which is covered by Medicare, is $2200.

I had my feeding tube placed in January of this year. They kept me overnight at MGH. Prior to my discharge the next day, we met with dietician from Coram/CVS. She explained that I had been "prescribed" a "nutrient dense" formula and that we would receive monthly shipments from Coram along with supplies which include large syringes, tubing and IV bags for gravity drip feeding. 

When we began the feedings, I immediately experienced, what Linda and I call, "baby spit up". It looks identical to what our boys would spit up after breast feeding. We played with the speed of flow through the tube and my sitting position during feeding. Finally, Linda sat down and looked at the ingredient list and found the list above. Not a single whole food ingredient. We called Coram and they sent us their whole food formula, again produced by Nestle, called Compleat. When we got it, we reviewed the label only to find the basic ingredients were identical to Isosource, with exception of added dehydrated chicken carrots and peas, less than 2% cranberry juice and tomato purée. Hardly a drastic change. 

Then we found Liquid Hope and had an angel of a visiting nurse, who has a Masters in Nutrition combined with a never say die attitude. We embarked on a conquest to acquire real nutrition for me. Between Linda and the new nurse, the powers that be didn't stand a chance. Liquid Hope is made from real food" including: chick peas, brown rice,carrots, green peas' sprouted quinoa, sweet potato, miso, almond butter, kale garlic and herbs. 


After weeks of wrangling with insurance issues and waiting for the folks at Liquid Hope to find a distributor in Maine, we received our first shipment on Wednesday. 
In my humble opinion, the medical community should be ashamed of recommending that already immune compromised patients and others dealing with a wide range of afflictions with compromised constitutions, including infants, be fed this semi-synthetic "candy" as a substitute for nutrition. 

There's no substitute for real food.

Here is a blog post from the founder of Liquid Hope:

http://functionalformularies.com/blog/#sthash.vCPB1tZm.jEs5tqPP.dpbs

This November 13th: NOT Just Another Day

So, The Hope-JG Foundation is hosting what promises to be an amazing event on Thursday, November 13th. We are blessed to host the folks from HARK and their documentary "Hope on the Horizon". To view the trailer and get ticket info, go to: www.hope-JG.org

Linda was setting up my morning tube feed a few days ago. She has pattern that carries her between my "Starship Enterprise" setup in the living room and the kitchen. On this day, headed for the kitchen, she stopped in her tracks and said "You realize what November 13th is, don't you?" To which I replied with my typical stupid male, wide eyed look and said "Umm, no." She smiled her irresistible smile and said "It's the day you were diagnosed with ALS seven years ago." And we both fought back tears and then started to smile again. You see, our minds both connect November 13th to the date my Dad died - 8 years ago on November 13th.

Now, I miss my Dad desperately. But, I'm convinced his handling of his own handicap (he had one of the first artificial hip replacements while in the service. I never knew him without a cane), with such grace and tenacity, prepared me for this long strange trip my family is on.

As for my diagnosis on that date, I don't look at that as anything other than a triumphant date. Those of you who know us are tired of hearing how we refused to accept the prognosis of 2 - 5 years (later to be shortened to 18 - 24 months by the second opinion Doctor in Boston). 

So, you ask, what does this Gregorian coincidence have to do with the Event this Thursday? Here's my take: Most people would look at the events of November 13th, 2006/2007 and think they were horrendous anniversary days no one would want to get out of bed for. I look at it differently. (Surprise.)

My Dad lived a full life and left a living legacy in not just his two sons, but in literally thousands of students and athletes he touched in his 30+ years of teaching and coaching, many of whom became researchers, nurses and physicians. He was a living example of Steve Gleason's motto, "No White Flags". As for the day of my diagnosis, given the 18 - 24 month timeframe handed to Linda and I a month later, it's a date for celebration, not despair, seven years later.

And that's exactly what this Thursday will be, a celebration of the lives of some our ALS heroes and those with ALS who have passed on but left their own unique and indelible mark on their families and the world. More importantly, it will be a celebration of life, with and without ALS. "Hope on the Horizon" is the perfect film to reinforce our willingness to honor families with ALS, past, present and future. It's also a perfect compliment to our mission to see an ALS/MS Residence here in Maine. It's the future and the future starts Thursday night when the doors open at 6:45 PM . If you can't join us, will you share this with a friend?

www.hope-JG.org

Study Finds That Hope is Associated with Willingness to Follow Nutrient Dense Diet

NOTE: This is a great article about a study with a small sample size. While the connection between hope and a willingness to try alternative diets and therapies may be intuitively logical, we disagree with the assertion the the "medical establishment" doesn't promote ALS patients pursuing a sugar free, nutrient dense diet. That has not been my experience working with Tha ALS Clinic team at Mass General.

 (NaturalNews) A new research study published in the journal Frontiers in Psychology sheds light on the relationships between hate, resentment and hope in persons afflicted with Amyotrophic Lateral Sclerosis (ALS, or "Lou Gehrig's disease"). The relationship of these factors to willingness to extend longevity through nutritional self-care was also examined. ALS is a progressive neurodegenerative disease affecting motor neurons. People with ALS experience muscle weakness, immobility, impaired speech and respiration problems. Most die within three to five years. 10 percent live 10 years or more. The medical establishment considers ALS to always be terminal.

The research analyzed responses to an online questionnaire that was created as part of a larger study. People with ALS were invited via online ALS forums, Facebook, a newsletter, as well as with an announcement on a website. Together with demographic data, subjects were asked to provide answers about hate, resentment and hope, related to their disease. A total of 83 subjects with ALS completed the survey.

The researchers found that hope is widely prevalent amongst the subjects. About 70 percent of subjects have hope that they could live 10 years or longer, regardless of whether an effective pharmaceutical treatment were to be discovered.

The medical establishment doesn't promote that a sugar-free nutrient-dense diet may contribute to increased wellness in people with ALS but if scientific research were to one day show that such a diet could extend life by a year, 18 percent of the subjects reported they would not follow the diet. About five percent said they would not follow the diet even if it were shown to increase longevity by two or more years.

Hope and willingness to make dietary changes

The study found those with hope of living 10 years or more were more likely to report a willingness to make dietary changes if such changes were demonstrated to increase longevity. The Frontiers in Psychology scientific study is the first research to show that some people with ALS would be willing sacrifice a year or more of their lives, rather than eat healthier. A previous Natural News article has reported on research that suggests that the high sugar diet recommended by the ALS and Muscular Dystrophy associations may prove to be detrimental to people with ALS (http://www.naturalnews.com/032380_Lou_Gehrigs_disease_sugar.html), although a scientific study has yet to be conducted to test this hypothesis. Further research is required to demonstrate scientifically whether or not a sugar-free, nutrient-dense diet, compared to the high sugar diet recommended by ALS and Muscular Dystrophy associations, produces greater wellness and even longevity in people with ALS.

Higher levels of hope, as well as lower levels of both hate and resentment, were reported by people having ALS for a longer time. Hopeful subjects were also less likely to hate ALS, and reported less resentment about living with ALS. Women reported more resentment about living with ALS than did men. Regarding the study's finding that people in marriages are more hopeful and have less hate against ALS, the researchers suggest, "Marriage may be protective against the suffering involved in the hating of living with ALS, and foster the strengthening of hope for the future..."

The research was conducted by Craig Oster, Ph.D. and Francesco Pagnini, Ph.D.; Dr. Oster, afflicted with ALS, has beaten the odds by surviving with the disease for the past 18 years, utilizing a holistic approach like is advocated by Natural News.

The full text of the study, including researchers' interpretations, may be found at: http://www.frontiersin.org

Sources for this article include:

http://www.frontiersin.org

http://www.alsa.org

http://www.naturalnews.com/032380_Lou_Gehrigs_disease_sugar.html

About the author:
Craig Oster, Ph.D. is a clinical psychologist who was diagnosed with ALS (Lou Gehrig's disease) nearly 17 years ago. Discharged from hospice in May 2009, he is demonstrating improvements in wellness utilizing holistic health principles, including a raw/living foods diet. Dr Craig, utilizing these principles and his psychoanalytic understanding, is committed to helping individuals in their quest for greater wellness. Dr Craig is the founder of the "Healthier People (with ALS) Project."

Follow Dr Craig's Historic Holistic Healing Journey: http://www.facebook.com/pages/Dr-Craig/37394...

Dr Craig's Website: http://www.healingwithdrcraig.com.

Dr Craig's Twitter Feed: https://twitter.com/#!/drcraigoster.

(NaturalNews) A new research study published in the journal Frontiers in Psychology sheds light on the relationships between hate, resentment and hope in persons afflicted with Amyotrophic Lateral Sclerosis (ALS, or "Lou Gehrig's disease"). The relationship of these factors to willingness to extend longevity through nutritional self-care was also examined. ALS is a progressive neurodegenerative disease affecting motor neurons. People with ALS experience muscle weakness, immobility, impaired speech and respiration problems. Most die within three to five years. 10 percent live 10 years or more. The medical establishment considers ALS to always be terminal.

The research analyzed responses to an online questionnaire that was created as part of a larger study. People with ALS were invited via online ALS forums, Facebook, a newsletter, as well as with an announcement on a website. Together with demographic data, subjects were asked to provide answers about hate, resentment and hope, related to their disease. A total of 83 subjects with ALS completed the survey.

The researchers found that hope is widely prevalent amongst the subjects. About 70 percent of subjects have hope that they could live 10 years or longer, regardless of whether an effective pharmaceutical treatment were to be discovered.

The medical establishment doesn't promote that a sugar-free nutrient-dense diet may contribute to increased wellness in people with ALS but if scientific research were to one day show that such a diet could extend life by a year, 18 percent of the subjects reported they would not follow the diet. About five percent said they would not follow the diet even if it were shown to increase longevity by two or more years.

Hope and willingness to make dietary changes

The study found those with hope of living 10 years or more were more likely to report a willingness to make dietary changes if such changes were demonstrated to increase longevity. The Frontiers in Psychology scientific study is the first research to show that some people with ALS would be willing sacrifice a year or more of their lives, rather than eat healthier. A previous Natural News article has reported on research that suggests that the high sugar diet recommended by the ALS and Muscular Dystrophy associations may prove to be detrimental to people with ALS (http://www.naturalnews.com/032380_Lou_Gehrigs_disease_sugar.html), although a scientific study has yet to be conducted to test this hypothesis. Further research is required to demonstrate scientifically whether or not a sugar-free, nutrient-dense diet, compared to the high sugar diet recommended by ALS and Muscular Dystrophy associations, produces greater wellness and even longevity in people with ALS.

Higher levels of hope, as well as lower levels of both hate and resentment, were reported by people having ALS for a longer time. Hopeful subjects were also less likely to hate ALS, and reported less resentment about living with ALS. Women reported more resentment about living with ALS than did men. Regarding the study's finding that people in marriages are more hopeful and have less hate against ALS, the researchers suggest, "Marriage may be protective against the suffering involved in the hating of living with ALS, and foster the strengthening of hope for the future..."

The research was conducted by Craig Oster, Ph.D. and Francesco Pagnini, Ph.D.; Dr. Oster, afflicted with ALS, has beaten the odds by surviving with the disease for the past 18 years, utilizing a holistic approach like is advocated by Natural News.

The full text of the study, including researchers' interpretations, may be found at: http://www.frontiersin.org

Sources for this article include:

http://www.frontiersin.org

http://www.alsa.org

http://www.naturalnews.com/032380_Lou_Gehrigs_disease_sugar.html

About the author:
Craig Oster, Ph.D. is a clinical psychologist who was diagnosed with ALS (Lou Gehrig's disease) nearly 17 years ago. Discharged from hospice in May 2009, he is demonstrating improvements in wellness utilizing holistic health principles, including a raw/living foods diet. Dr Craig, utilizing these principles and his psychoanalytic understanding, is committed to helping individuals in their quest for greater wellness. Dr Craig is the founder of the "Healthier People (with ALS) Project."

Follow Dr Craig's Historic Holistic Healing Journey: http://www.facebook.com/pages/Dr-Craig/37394...

Dr Craig's Website: http://www.healingwithdrcraig.com.

Dr Craig's Twitter Feed: https://twitter.com/#!/drcraigoster

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.