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.

ALS Advocates and Congress Must Have a Contingency Plan If CMS Doesn't Respond to Congressional Letter

Here is a link to,a press release tailored to the Maine constituents of two Senators who signed the September 11th letter to Administrator Tavenner of the Centers for Medicare and Medicaid Services (CMS) regarding Speech Generating Dèvices (SGD's).  I want to publicly thank Senator Collins for co-sponsoring the letter and to Senator King's staff for getting engaged in this issue early on. 

Clearly, there were many parties involved in crafting the letter and getting the 200 signatures of other members of Congress. Nonetheless, the letter called for a response to pointed questions from CMS on or before October 1st. I've written my contacts at both King's and Collins' offices to ask what the contingency plan is should CMS miss the deadline. So far, no answer.

As individual advocates, and even the advocacy groups formed by professional associations and organizations, we should be prepared with a unified strategy assuming CMS does not respond satisfactorily to the letter from Congress by Oct. 1st. WE MUST BE PREPARED TO MAINTAIN THE PRESSURE ON CMS TO ENGAGE IN AN OPEN, HONEST DIALOGUE FOR CHANGE!

If CMS maintains their current position of obfuscation, blaming manufacturers of SGD's and pointing to the National Coverage Determination, and the various individual advocates and industry and professional advocacy organizations don't coordinate our efforts, any change will take longer - and ALS patients don't have time to waste.

As the line from the movie Gladiator says, "As one!"

http://politicalnews.me/?id=30211&keys=SGDS-ALS-NEUROLOGICAL-DISEASES

Medicare says "That's our story and we're sticking to it"

Late last evening I opened an envelope from the Centers for Medicare and Medicaid Services (CMS). It contained an obvious boilerplate letter (tipoff: the date is rubber stamped) from Laurence Wilson, Director, Chronic Care Policy Group.

In this letter, Mr. Wilson repeats verbatim, what has obviously become the CMS official statement on the SGD issue. The same statement that was attributed to Aaron Albright in the September 2nd edition of the Washington Post and, in part, says: "Medicare has covered speech-generating devices since 2001, which greatly improve the day-to-day lives of many beneficiaries. This policy has not changed, nor have we proposed this coverage to change."

This is very clever wording. Something that seems to have been lost on advocates for the disabled in the heat of battle is that CMS is correct when it states they haven't changed any rules. That's the grain of truth which makes makes any Big Lie effective. Remember, the document that started the uproar, issued by CMS on February 27th of this year, was a Coverage Reminder. The obfuscation is, they are changing the way they administer the existing rules. Baseball fans and players understand the frustration of an umpire who shortens the strike zone in the 7th inning. That's effectively what CMS has done with this Coverage Reminder. They've put Medicare beneficiaries, DME suppliers and SGD manufacturers on notice that they are changing the strike zone. The problem is, this isn't a game.

(NOTE: Many argue that by reclassifying SGD's to the "capped rental" category of Durable Medical Equipment (DME) from the "fully purchased" category constitutes a rule change. We think so, and CMS disagrees (to no surprise). The issue of how SGD's are paid for was not addressed in the February 27th Coverage Reminder so we are not addressing that issue in this article.)

By changing the way CMS administers the rules, they are placing thousands of speech impaired people at risk of social isolation, not being able to effectively communicate their wishes to medical staff and family and have restricted beneficiaries, in this age of Facebook, Twitter, Instagram and texting, to only face-to-face communication. And the irony is, CMS never paid for these added "frills" - ever. It was always paid for by the beneficiaries out of pocket.

In a letter delivered to CMS yesterday, and signed by 27 Senators and almost 200 House members, the closing paragraph begins: "The patients who are in need of SGD's are some of Medicare's most vulnerable beneficiaries." Very true. And CMS has inexplicably changed the strike zone, ignored pleas from Congress and, to be kind, they are now artfully weaving a fictitious story line which flies in the face of reality.

Why? I'm becoming more convinced with each passing day, it's one of two things:

1.  It's just an enormous bureaucracy run amok and too proud to admit it's messed up, or

2.  It's an attempt to pass costs on to beneficiaries.

If it's number 2, taking into consideration the Congressional sentiment that CMS' decisions attack the most vulnerable among us, shame on them.

An article from today's The Hill:

http://thehill.com/policy/healthcare/217622-lawmakers-als-patients-hurt-by-new-medicare-policies

Why Would Medicare Lie to the American Public Rather Than Defend It's Position?

At 8:02 PM last evening, the Washington Post posted online a wonderfully written Op-Ed piece by former NFL star Steve Gleason.

http://www.washingtonpost.com/national/health-science/former-nfl-player-with-als-uses-his-eyes-to-type-and-technology-to-speak/2014/08/29/0de480ac-2d1e-11e4-9b98-848790384093_story.html

At 8:10 PM, the paper posted the following, carefully worded statement from Medicare spokesperson Aaron Albright

“We are committed to ensure that beneficiaries have access to needed technologies to improve their quality of life, including the coverage of speech-generating devices for individuals with a severe speech impairment. Medicare has covered speech-generating devices since 2001, which greatly improve the day-to-day lives of many beneficiaries. This policy has not changed, nor have we proposed this coverage to change. With the rapidly evolving technology in this area, our Medicare payment contractors are currently undergoing a product review of available speech-generating devices to ensure that they comply with our coverage rules and the Medicare law. CMS extended this review until Dec. 1, 2014 to ensure that we [are] able to review and address issues that stakeholders have . . . raised, including the ALS community’s desire for beneficiaries to have access to devices with expanded functionality.”

The reaction on social media has been growing exponentially as disability rights advocates, the afflicted and their families wake to this news. Advocates and manufacturers as well as members of Congress have been flooding The Centers for Medicare and Medicaid Services (CMS) with letters of reaction to a Coverage Reminder CMS issued on 2/27/14 specific to Speech Generating Devices (SGD's).

The Coverage Reminder states, in part, that:

"This benefit does not extend coverage to the broader range of augmentative and alternative communications devices (AAC) that have capabilities exceeding the sole function(s) of speech generation such as (not all-inclusive): wireless and cellular communication capabilities, environmental control capability, non-speech generating software (e.g., games, word processing, email)."

Essentially, the only type of SGD Medicare will allow is one which can only perform communication to those within range of hearing. Don't take my word for it, here is the text of the actual CMS reminder:

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

The more important point here is: Why did Medicare choose to release this carefully worded and somewhat obtuse statement rather than defend it's position as outlined in the 2/27 Coverage Reminder? CMS is dodging the issue, not responding in detail to the public, advocacy groups and even Congress. In his statement, Mr. Albright states: 

"This policy has not changed, nor have we proposed this coverage to change."

As with any lie, there is a grain of truth. Mr. Albright, it's the changes in administration of the rules we are concerned about. As you wrote this statement, you knew people were being denied devices. You knew that CMS was changing the administration of the rules to deny paralyzed people eye gaze equipment to access the functionality of SGD's. Why lie? Why not say: "We're changing the playing field because it's an attempt to shift costs to beneficiaries."? or even "We don't believe that disabled people need internet access." 


Mr. Albright, your boss, Ms. Tavenner has chosen to ignore my letter to her (http://hope-jg.blogspot.com/2014/08/an-open-letter-to-marilyn-tavenner.html). I know, she's ignored the pleas of housands to at least explain herself. I'll give you the same opportunity. I can be reached through this blog or at: jgregoire7@roadrunner.com. 

I'd love to hear why CMS is dodging this issue and using you to perpetuate an outright lie to the most vulnerable among us.

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

Has YOUR Congressional Rep Signed On to Confront CMS?

The Hope-JG Foundation shared a link.

47 minutes ago · Edited

SEE THE ATTACHED NOTE AND LIST OF CONGRESSIONAL MEMBERS WHO HAVE NOT SIGNED THE "DEAR COLLEAGUE" LETTER CIRCULATING THE HILL! If your Congress people haven't signed on, contact their office and ask why. This means voices for the voiceless.

MAINE PEEPS! Angus King is the only Maine member who hasn't signed on! Call or email his offices today!http://www.congressmerge.com/onlinedb/cgi-bin/newmemberbio.cgi?member=MEJR&site=congressmerge

OUR CALLS AND EMAILS ARE WORKING : You are part of change

Since the delay in the implementation of the PDAC certification of 12-1-2014 was announced last Friday the congressional sponsors of our "Dear Colleague" letter have decided to keep it “opened” for one more week to enlist as many supporters . Additional signatures means higher ability to make change. The goal is to have over 100 Signatures....... Before calling out CMS.

Coming out of our PDAC meetings today in Fargo it is super clear that we need to make this change through our elected officials. Keep calling, keep emailing… I can't stress that enough. Call everyone you know....... I guarantee for everyone person you call 10 ALS , and Rett Families (and so many others) will have a hug and a huge thank you behind it....

Lots of good news, but we need to keep up the push! See below for updated list of signers. Great addition today: Senate HELP Committee Ranking Member, Sen. Lamar Alexander. HUGE.

Current totals: 67 House Members; and 5 Senators (Collins, Landrieu, Vitter, Blunt, Alexander); and for what it’s worth: 33 states.
If we can add any additional pressure to any Senator please do what you can………….


Here is a current list of those who have signed on the letter. We need to address the ones that are not on this list:



Rep. Suzan DelBene (D-WA)
Rep. Doc Hastings (R-WA)
Rep. Cathy McMorris Rodgers (R-WA)


Rep. Michele Bachmann (R-MN)
Rep. Betty McCollum (D-MN)
Rep. Erik Paulsen (R-MN)

Rep. Collin Peterson (D-MN)

Sen. Roy Blunt (R-MO)

Rep. John Larson (D-CT)

Rep. Julia Brownley (D-CA)
Rep. Tony Cardenas (D-CA)
Rep. Alan Lowenthal (D-CA)
Rep. Adam Schiff (D-CA)

Rep. Patrick Meehan (R-PA)
Rep. Jim Gerlach (R-PA)

Sen. Susan Collins (R-ME)
Rep. Chellie Pingree (D-ME)
Rep. Mike Michaud (D-ME)


Rep. John Conyers Jr. (D-MI)
Tim Walberg (R-MI)


Rep. G.K. Butterfield (D-NC)
Rep. George Holding (R-NC)
Rep. Walter B. Jones (R-NC)
Rep. Patrick McHenry (R-NC)

Rep. Mark Meadows (R-NC)

Rep. Michael E. Capuano (D-Mass.)
Rep. Katherine Clark (D-Mass.)
Rep. Joe Kennedy (D-Mass.)
Rep. Stephen F. Lynch (D-Mass.)

Rep. John Tierney (D-Mass.)

Sen. Mary Landrieu (D-LA)
Rep. Vance McAllister (R-LA)
Rep. Steve Scalise (R-LA)
Sen. David Vitter (R-LA)

Rep. Lee Terry (R-NE)

Sen. Lamar Alexander (R-Tenn.)
Rep. Phil Roe, M.D. (R-Tenn.)

Rep. Steve Chabot (R-OH)
Rep. David P. Joyce (R-OH)

Rep. Jim Renacci (R-OH)
Rep. Tim Ryan (D-OH)
Rep. Steve Stivers (R-OH)

Rep. Gregg Harper (R-Miss.)

Rep. Yvette Clarke (D-NY)
Rep. Chris Gibson (R-NY)
Rep. Richard Hanna (R-NY)

Rep. Steve Israel (D-NY)
Rep. Peter King (R-NY)

Rep. Dan Maffei (D-NY)
Rep. Carolyn McCarthy (D-NY)
Rep. Louise Slaughter (D-NY)
Rep. Paul D. Tonko (D-NY)

Rep. Kevin Yoder (R-KS)

Rep. Bradley Byrne (R-AL)

Rep. Carol Shea-Porter (D-NH)

Rep. Leonard Lance (R-NJ)
Rep. Chris Smith (R-NJ)

Rep. Peter DeFazio (D-OR)

Rep. C.A. Dutch Ruppersberger (D-MD)

Rep. Ileana Ros-Lehtinen (R-FL)
Rep. Dennis A. Ross (R-FL)

Rep. James R. Langevin (D-RI)

Rep. Raul M. Grijalva (D-Ariz)

Rep. James Lankford (R-OK)

Rep. Robert J. Wittman (R-VA)

Rep. Michael T. McCaul (R-TX)

Rep. Trey Gowdy (R-SC)

Rep. Brad Schneider (D-Ill)

Rep. Harold Rogers (R-KY)
Rep. Ed Whitfield (R-KY)

Rep. Kevin Cramer (R-ND)

Rep. Jared Polis (D-Colo)




Don’t Let Medicare Take the Ability to Communicate Away from People Living With Severe Disabilities! Act Today!

Recent Medicare changes are drastically reducing or totally inhibiting access to the technologies that provide people living with disabilities the ability to communicate. These are some of Medicare’s most vulnerable beneficiaries.

ACT TODAY: Contact your Representative and Senators and ask them to sign the letter“Ensure ALS Patients Retain Access to Critical Communication Tools Ensure; Join letter to CMS urging clarification of recent Speech Generating Device policies.”

Sweeping changes have been put in to place in 2014. The critical issues at hand:

Capped Rental
As of April 1, 2014, Medicare implemented a policy that will begin denying payment for many of the medically necessary speech generating devices (SGD’s) used by people with ALS (Lou Gehrig’s Disease), Cerebral Palsy, Muscular Dystrophy, Rett Syndrome, spinal cord injuries, spinal muscular atrophy and other impairments, when they enter a health care facility, such as a skilled nursing home, or hospice. Taking these highly specialized devices from this patient group leaves them no way to communicate at the patient’s most vulnerable moments and at a time when medical attention is critical.

Unlocked Devices
Effective September 1, 2014, many severely disabled individuals will lose the ability to access SGD functionalities that provide them with the opportunity to communicate and have contact with loved ones and medical professionals who are outside the patient’s home. Medicare has stated that it will not allow individuals using Medicare-provided speech generating devices to use their own funds to "unlock" the devices, even though this is done at no additional cost to Medicare. The ability to “unlock” devices allowed beneficiaries the ability to communicate and participate beyond the confines of their rooms through email, environmental controls, internet, and text messages. As of September 1st, Medicare will no longer pay for any device that has even the potential to be unlocked to allow communication that is not face-to-face interaction with other individuals directly in front of device. This change terminates any direct private communication to the doctor, therapist and clinical teams via email, from caretakers via text and even first responders in an emergency situation.

Eye-gaze Access
Currently, Medicare has been routinely denying coverage of critical eye-gaze technology for many SGD-eligible beneficiaries. This access method is the only point of access to operate speech generating devices for some individuals, including those with ALS. Both a doctor's and speech language pathologist's evaluation is necessary and documented in order for the patient to receive the benefit. However, Medicare continues to routinely deny eye-gaze access even when it has been deemed medical necessity by two trained and certified medical professionals. The appeals process is now backlogged for years in the Medicare system. During that time, those who have been diagnosed with ALS have precious few months before symptoms onset that limit their ability to speak while awaiting their appeal outcome. After years of waiting for an appeal to Medicare, the eye–gaze coverage is routinely allowed, but individuals may have already passed without the opportunity to communicate with friends and loved ones or participate in their own care during the final stages of their lives.

We cannot allow this to happen. We need to work together to change this decision.

How Can You Help? Your support is imperative NOW.

We need you to speak up for those who can’t and we need quick action to stop these devastating changes from impacting patients who are in desperate need of access to speech generating devices. We are asking you to please contact your local House Representatives and Senators, asking that they sign a bi-partisan newly introduced letter to Marilyn Tavenner, head of the Centers for Medicare and Medicaid Services (CMS) to address these changes. The Dear Colleague letter is titled:

"Ensure ALS Patients Retain Access to Critical Communication Tools; Join letter to CMS urging clarification of recent Speech Generating Device policies"

The letter will be open for only one week; your members of Congress must sign-on by Wednesday, August 27th. It is currently sponsored by Honorable Member of Congress Cynthia McMorris-Rodgers, Honorable Member of Congress John Tierney, Honorable Member of Congress Erik Paulsen and the Honorable Senator Collins. Every phone call, e-mail, office visit matters! Please forward this to everyone who will act. If one of these is your member of Congress, please contact them and thank them for their support on this matter of critical importance.

Find Your Local Representative


Find Your Local Senator

Tobii ATI - Assistive Technology Solution

www.tobii.com

Assistive technology solutions that give individuals with communication disabilities a voice and a way to live more fulfilled, integrated and independent lives

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The Hope-JG Foundation

3 hours ago · Edited

Hey Maine friends! We are on the hunt for a free or cheap venue to host a fund raising event.. Only requirement is that it should have a stage for a band. Nightclubs, pubs, grange halls, dance halls...no limits on what kind of facility. We are early enough in planning that we can fit the event the around the venue. If you know a guy who knows a guy, chat him up and let us know. Thanks!

Oh yeah...it just shouldn't be in Fort Kent:)

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• Elizabeth Day Nangle and Laci Berry like this.

The Hope-JG Foundation shared a link.

12 hours ago

WATCH THIS ANND TAKE ACTION! As in the movie Gladiator, we can overturn this cruel ruling by CMS if we act "As one!" Write to congressional delegation - whether you can speak or not.

http://www.10tv.com/content/stories/2014/08/27/lancaster-ohio-medicare-funding-changes-may-affect-als-patient-needs.html

Medicare Funding Changes May Affect ALS Patient Needs

www.10tv.com

While the viral Ice Bucket Challenge is bringing awareness to Lou Gehrig’s decease, there’s concern over another issue for some sufferers.

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• Patty Meaney Whalen, Lynda Donnelly Dellinger, Linda Walker Gregoire and 2 others like this.

The Hope-JG Foundation shared a link.

August 22

Kudos to Sean Patrick O'Brien for writing an article that tells it like it is. Love you...in a manly way, of course:) PLEASE READ THIS,! Patrick talks about the care he receives at the Saling ALS Residence in the Leonard Florence Center in Chelsea, MA. A model we are determined to replicate in Maine!


http://time.com/3160305/living-with-als/

Living With ALS: 'I Can't Believe I'm Still Alive'

time.com

The past few weeks I've watched from my bed as the disease that is slowly killing me has turned into an overnight trend

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• Lissa Woodruff Stempek, Barry Morrill, Lynda Donnelly Dellinger and 4 others like this.

The Hope-JG Foundation

August 21

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• Laci Berry, Brian Bickford, Patty Meaney Whalen and 2 others like this.

The Hope-JG Foundation shared a link.

August 20

The Hope-JG Foundation store is open!

http://www.hope-jg.org/#!online-store/cagy

The Hope-JG Foundation | SHOP

www.hope-jg.org

The Hope-JG Foundation is an ALS charity with a focus on establishing an ALS/MS Residence in Maine. We exist to help families of ALS enhance the quality of life

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• Jose Chavez, Denise Piatt-Hord, Wanda Tidwell and 38 others like this.

The Hope-JG Foundation shared a link.

August 19

We first posted this before the Ice Bucket Challenge blew up and greatly increased the visibility of ALS in the public consciousness. Medicare has changed the rules for covering speech devices. They won't cover eye gaze hardware for those w... See More

The Hope-JG Foundation Blog: Time for Diplomacy is Running Out: CMS is Wrong

hope-jg.blogspot.com

The Hope-JG Foundation is a 501(c)3 Non-Profit corporation dedicated to helping families living with ALS and other neuromuscular diseases, live life to its fullest by leveraging existing world class technology, supporting technical innovation and...

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• Sara McLean likes this.
• 

  Michele Dupree 31,000 emails have hit congress and 7,000 to Burwell so far!

  1 · August 19 at 8:29pm
• 

  The Hope-JG Foundation replied · 3 Replies

The Hope-JG Foundation shared a link.

August 19 · Edited

Here is the story Amanda Hill did. My wife is amazing! And the Anchor even mentioned the foundation and building an ALS/MS Residence!

http://www.wcsh6.com/story/news/local/2014/08/19/ice-bucket-challenge-als-gregoire/14308791/

Ice bucket challenge represents hope to Windham man

www.wcsh6.com

A Windham man who's had ALS for 7 years appreciates the awareness and funds the ice bucket challenge has generated.

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• Top Comments

  Ernesta Stevens Kennedy, Ricky Judge, Katie Dube and 32 others like this.
• 

  Sarah Caldwell This is wonderful. Absolutely wonderful. We love you guys & think of you every day 

  2 · August 19 at 5:01pm
• 

  The Hope-JG Foundation Thanks Sarah! We think of you guys too:)

  1 · August 19 at 5:13pm
• 

  Ricky Judge nice job guy's

  1 · August 20 at 11:49am
• View 1 more comment

The Hope-JG Foundation

August 19

Amanda Hill just left. She shot the interview they teased on the 6 PM news. Look for it! As usual, my wife was stunning and articulate 

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• Sara McLean, Justin Whynot, Lauren Thomas and 4 others like this.
• 

  Andrea Millette I didn't get it here in Mass

  August 19 at 4:05pm
• 2 Replies

The Hope-JG Foundation shared a link.

August 17

http://hope-jg.blogspot.com/2014/08/stephen-hawking-als-and-importance-of.html

The Hope-JG Foundation Blog: Stephen Hawking, ALS and the Importance of Having a Mission

hope-jg.blogspot.com

The Hope-JG Foundation is a 501(c)3 Non-Profit corporation dedicated to helping families living with ALS and other neuromuscular diseases, live life to...

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• Sara McLean, Elaine Wierzbicki, Kenji Fujimoto and 6 others like this.
• 

  Sara McLean He is one of the most brilliant and thought provoking people I have ever known, not personally of course! Such an inspiration!

  1 · August 21 at 5:57pm

The Hope-JG Foundation shared a link.

August 13

Received several messages asking how to donate. Here's the link:

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

Hope-JG Foundation Donate

www.hope-jg.org

The Hope-JG Foundation is a 501(c)3 Non-Profit ALS charity dedicated to helping families living with ALS and other neuromuscular diseases

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• Diane Clifford and Annie Hope like this.

The Hope-JG Foundation shared a link.

August 12

http://hope-jg.blogspot.com/2014/08/an-open-letter-to-marilyn-tavenner.html

The Hope-JG Foundation Blog: An Open Letter to Marilyn Tavenner About Medicare and Speech Devices

hope-jg.blogspot.com

The Hope-JG Foundation is a 501(c)3 Non-Profit corporation dedicated to helping families living with ALS and other neuromuscular diseases, live life to its fullest by leveraging existing world class technology, supporting technical innovation and...

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• Top Comments

  Susan Kujawa, Cecilia Satterwhite, Bertha Trevino and 25 others like this.
• 

  Nancy Geary Very good account of the implications of misguided decisions!!!

  1 · August 13 at 1:19pm
• 

  Michele Dupree Triple like! Thank you!!

  1 · August 12 at 11:29am

The Hope-JG Foundation shared a link.

August 11 · Edited

Wondering what the fuss is about regarding Medicare and Speech Devices? Watch this:

http://www.cbs46.com/video?autoStart=true&topVideoCatNo=default&clipId=10462864

www.cbs46.com

www.cbs46.com

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• Mandy Renteria, Maria Manos Clark, Greta Roberts and 6 others like this.

The Hope-JG Foundation shared a link.

August 11

http://hope-jg.blogspot.com/2014/08/a-new-normal.html

The Hope-JG Foundation Blog: A New Normal

hope-jg.blogspot.com

The Hope-JG Foundation is a 501(c)3 Non-Profit corporation dedicated to helping families living with ALS and other neuromuscular diseases, live life to its fullest by leveraging existing world class technology, supporting technical innovation and biomedical research.

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• Steve Kolb, Kate Hough Myhaver and 2 others like this.
• 

  Michele Dupree Another great blog, from the heart. You're awesome.

  1 · August 11 at 9:55am

The Hope-JG Foundation shared a link.

August 9

http://hope-jg.blogspot.com/2014/08/totally-without-hope-one-cannot-live.html

The Hope-JG Foundation Blog: Never. Lose. Hope.

hope-jg.blogspot.com

The Hope-JG Foundation is a 501(c)3 Non-Profit corporation dedicated to helping families living with ALS and other neuromuscular diseases, live life to its fullest by leveraging existing world class technology, supporting technical innovation and biomedical research.

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• Patty Meaney Whalen, Corey Jess Nickerson and Michele Dupree like this.
• 

  Michele Dupree Beautiful!!

  1 · August 9 at 10:13pm

The Hope-JG Foundation shared a link.

August 8

http://hope-jg.blogspot.com/2014/08/sherlock-holmes-rose-and-providence.html

The Hope-JG Foundation Blog: Sherlock Holmes, A Rose and Providence

hope-jg.blogspot.com

The Hope-JG Foundation is a 501(c)3 Non-Profit corporation dedicated to helping families living with ALS and other neuromuscular diseases, live life to its fullest by leveraging existing world class...

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• Linda Walker Gregoire, Patty Meaney Whalen and Lynda Donnelly Dellinger like this.

The Hope-JG Foundation shared a link.

August 7

http://hope-jg.blogspot.com/2014/08/ice-bucket-challenge-great-awareness.html

The Hope-JG Foundation Blog: Ice Bucket Challenge A Great Awareness Tool

hope-jg.blogspot.com

The Hope-JG Foundation is a 501(c)3 Non-Profit corporation dedicated to helping families living with ALS and other neuromuscular diseases, live life to its fullest by leveraging existing world class technology, supporting technical innovation and...

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• Sara McLean, Takashi Wanami, Kenji Fujimoto and 3 others like this.
• 

  Sara McLean I am dumbstruck at the awareness and funding this simple event has created, what a blessing! Beautiful photo of you both! 

  1 · August 21 at 5:59pm

The Hope-JG Foundation shared a link.

August 5

http://hope-jg.blogspot.com/2014/08/the-human-spirit-hopes-often-in-spite.html

The Hope-JG Foundation Blog: The Human Spirit Hopes, Often In Spite of What's Logical

hope-jg.blogspot.com

The Hope-JG Foundation is a 501(c)3 Non-Profit corporation dedicated to helping families living with ALS and other neuromuscular diseases, live life to its fullest by leveraging existing world class technology, supporting technical innovation and...

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• Lynda Donnelly Dellinger, Kenji Fujimoto, Patty Meaney Whalen and 3 others like this.
• 

  Michele Dupree Beautiful!

  1 · August 5 at 5:16pm

The Hope-JG Foundation shared a link.

July 31

http://hope-jg.blogspot.com/2014/07/got-our-first-hope-photo-for-gallery.html

The Hope-JG Foundation Blog: Got Our First Hope Photo For The Gallery!

hope-jg.blogspot.com

The Hope-JG Foundation is a 501(c)3 Non-Profit corporation dedicated to helping families living with ALS and other neuromuscular diseases, live life to its fullest by leveraging existing world class technology, supporting technical innovation and biomedical research.

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The Hope-JG Foundation shared a link.

July 29

http://hope-jg.blogspot.com/2014/07/team-gleason-knows-its-about-innovation.html

The Hope-JG Foundation Blog: Team Gleason Knows It's About Innovation - And Inspires It

hope-jg.blogspot.com

The Hope-JG Foundation is a 501(c)3 Non-Profit corporation dedicated to helping families living with ALS and other neuromuscular diseases, live life to its fullest by leveraging existing world class technology, supporting technical innovation and...

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• Ted Harada, Kenji Fujimoto and 2 others like this.