Our Caregivers Bill in Maine

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

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

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

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

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

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

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

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

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

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

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

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

    

Life With ALS: Reality Check

..

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

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

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

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

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

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

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

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

Thanksgiving Perspective

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

By Guest Blogger Linda Gregoire

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

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

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

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

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

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

Don't .Blow Your Chance to Play!

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

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

 

I SHOULD BE DEAD - BUT HERES WHY IM NOT

PROLOGUE:  On this final hour of ALS Awareness Month, I wanted to re-post this blog I was blessed to write for our friends at Functional Formularies. Even though May is designated as ALS Awareness Month, for every family living with (or who has lived with) ALS, every minute of every day is a time they are painfully aware of this still incurable disease.  ALS doesn't take time off. It's a relentless, still uncontrable force rhat rips and shreds its way through the very fabric of a family. The story below is our story. Every victim of ALS has a different story with commen themes. We honor the plight of every afflicted individual and their families. This may be our story but there are thousands of stories like ours - and thousands more that are different,with the exception of thc  common foe. We offer our story for one reason: to offer hope that there's a fight to be had. If you have a family fighting ALS in your town, visit or call them and ask what you might do to help. It might be as simple as mowing a lawn or even sitting and holding a hand.  

I should have died in 2009. And I probably would have if I'd listened to the Neurologist at St. Elizabeth's Hospital in Boston. If we had taken his words to heart. Taken them as fact, rather than an educated guess, I'd be dead. If I had let his words "I'd say you have 18 - 24 months to live" soak into my brain like a toxic chemical spill on pristine marshland, I'd be dead.  But, in the parking lot outside the hospital on that cold December day, Linda and I made a pact that we wouldn't let the words of any man, regardless of his scholarly pedigree, dictate the rest of our lives. 

 I'd be dead if we had followed the course of action of my first Neurologist here in Maine: "There's nothing I can do until you're faced with the choice of going on a ventilator.." he said, at what would our final meeting (although, he didn't know that). 

When we told friends and family about my diagnosis the reactions ranged from "What's ALS?" to "Well, you'd better get your affairs in order fast.". All sincere and heartfelt reactions. But no one offered the one thing we really needed - Hope. Even people at church would say "We will pray for you - but you know, there's reality face too.".  No one offered the kind of Hope that we felt in our bones.  We lean on the Biblical definition of Hope. Not as wishful thinking, but as the confident expectation of something good. Again, if we'd have received those dismal thoughts and adopted those attitudes as our own,  I'd probably be dead.

It wasn't until we found the ALS Multidisciplinary Clinic at Mass General Hospital (MGH), that we interacted with mainstream clinicians who were on the same "Hope Track" as us. During our first meeting with this amazing team, the male Nurse who was doing the intake and verifying medical history, told us "We're here to help you LIVE with ALS.". He was taken aback  when we both choked up. We had finally found our second home. 

In spite of the dire prognosis we'd received in 2007, my disease progressed slowly. Although I lost functional speech in 2010, I was able to eat by mouth all along. A major focus during my quarterly visits to the MGH Clinic was maintaining body weight or even increasing it. Multiple studies have shown that pALS (persons with ALS) have a longer life expectancy if they maintain a slightly higher than ideal body weight. By the summer of 2012, my ability to eat at a near normal pace became more of a challenge. I was keeping meticulous track of my daily caloric intake using the MyFitnesPal app on my iPad. I was taking in at or above 2600 calories a day, but by Christmas of 2012, I was spending most of my waking hours just eating. It was time to talk about a feeding tube. 

Our next ALS Clinic appointment was in January of 2013. The decision to undergo the feeding tube procedure was confirmed by the team at MGH and was scheduled for later that month. I had the surgery with just a local and some Valium. We had gone to school on the experiences of pALS who had undergone the procedure under general anesthesia. Too many, for our comfort, had extended post-operative stays and even complications. 

After an overnight stay, to ensure the tube was operating well and for a "Feeding Tubes 101" crash course from a Nurse, we were home with s case of commercial formula.  Being novices to enteral feeding, we never questioned whether there were alternative choices. We trusted the hospital dietician's choice. A mistake we wouldn't make again. 

Within a week, I started having severe gastrointestinal issues. Over the three months to follow, I would make four trips to the local ER. We heard varying opinions from the local clinicians,  from the popular "You'll just need to make friends with it." to "Its just the disease progression." We we're back at that place of no Hope. 

Linda is always thinking. Always reading and communicating with other caregivers. She ran across information on a small company from Ohio making a formula called "Liquid Hope". Now, we're people of faith. We'd seen God move on our behalf before and had no doubt this was another sign from above. We emailed Robin Gentry McGee, Founder of Functional Formularies the company from Ohio, spoke to our visiting Nurse who, after reading the ingredient list, was very supportive of trying this. Finally, after 3 months of  gathering insurance referrals from Doctors (my PCP and Neurologist by now trusted that we had done our research and were very supportive) and making the case to my insurance, they approved the move to Liquid Hope.  

It took only a few days to feel the difference. Gastrointestinal issues disappeared. The grogginess I experienced on the sugar laden formulas went away. As a matter of fact, i had a renewed sense of energy. During our next visit to MGH, I had gained back  5 lbs. over the three years I've. Even using Liquid Hope as my sole source of nutrition my blood work has been perfect and I've maintained my weight 185 lbs.  We believe it's saved my life. .

When I say it's saved my life, it's not hyperbole and I not trying to sell anyone the idea of following mg path. But we DO know that, had we listened to the long list of voices who spoke of my imminent demise were wrong. They were wrong, at least in part, because we refused to receive  their words. 

Yes, I should be dead. But I'm not. I'm celebrating the  ninth ALS Awareness Month since my diagnosis. Not in spite of the many people who heard the acronym "ALS" and translated it as "death sentence". We're convinced I'm here because those voices became irrelevant to our daily lives and we've made informed decisions, like the decision to change to Liquid Hope. 

But mostly, I'm here because my body and soul are being nourished by the word we've become associated with - Hope.

No matter what trials you face, There's always Hope. 

How Hope Helps Us Celebrate My ”Terminal” Disease

Please this article on The Huffington Post at: http://www.huffingtonpost.com/entry/5861473ee4b04d7df167d09a?timestamp=1482774035244

2nd Annual Hope-JG Golf Scramble Announced

SAVE THE DATE! August 16th, 2016 will be the date for the second annual Hope-JG Golf Scramble to support and honor families affected.by ALS.  The event will be held at the beautiful,Val Halla Golf and Recreation Center at 60 Val Halla Road, Cumberland, ME 04021 

Now accepting golfer registrations and sponsorships. For more information go to: http://www.hope-jg.org/#!2016-golf-scramble/cd1r 

Fun! Sun! Prizes! Food! Photos! And a chance to support families with ALS. 

Learn more by watching our video...

New Dietary Guidlines Ignore The Sick and Elderly

Every five years the US government releases new dietary guidelines for the American people. The guidelines were introduced this week and recommend a "healthy eating pattern"...as opposed to an unhealthy one, I guess. 

 "One new recommendation is that added sugar should be 10 percent of daily calories. That's about 200 calories a day, or about the amount in one 16-ounce sugary drink. The recommendation is part of a larger push to help consumers isolate added sugars from naturally occurring ones like those in fruit and milk. Added sugars generally add empty calories to the diet."  *Source FoxNews.com

So...these are the new government guidelines for sugar intake. 200 calories of sugar is equivalent to 12.5 teaspoons per day (still a lot). Shouldn't these guidelines apply to the sickest among us too? Obviously not. 

"The carbohydrates in Isosource 1.5 Cal provide the majority of the calories in the tube feeding formula. Maltodextrin and sucrose act as the primary source of carbohydrates in the formula. A 250-ml can contains 44 grams of carbohydrate." * Source: Livestrong.com

People on enteral formulas routinely are prescribed commercial formulas laden with sugars. As described above, Nestlés Isosource 1.5 has 44 grams of carbohydrates, mostly from sugars. If we do some simple math (hang with me, it's worth it): 

A typical adult patient requires 2250 calories per day (or 6 - 250 ml containers of Isosource @ 375 calories per container). At 44 g per of carbohydrates per box (remember, mostly from sugars) that totals 1020 g of carbs per day or 55.6 tsp. If we give the benefit of the doubt that only 75% of those calories are from sugar, that equates to 41.7 tsp of sugar per day.  That's 3.5x the recommended sugar intake of 12.5 tsp!

The new government guidelines say, to stay healthy, Americans should limit sugar intake to 12.5 tsp a day. YET, the medical community is routinely prescribing "semi synthetic nutritional formulas" that pump 3.5 times the amount of sugar into people who are sick and who NEED  REAL FOOD!

Now, I'm sure there are those who will take exception to my math. I'm not a Registered Dietician or Nutritionist. Here are some facts which are indisputable:

1)  Over the past few years the evidence against sugar has been mounting. In March of 2015 the World Health Organization issued the same guidelines as the US just restated. The WHO even took it a step further and stated that 5% of daily intake (6tsp) would "provide additional health benefits". The scientific evidence that sugar is a major contributing factor in cancer, heart disease and Type-II Diabetes is clear.

2)  Enteral formula is a big business cornered by a handful of global corporations. Add to that "nutritional supplements" like Boost (first three ingredients: Water, Corn Maltodextrin, Sugar) and Ensure (first three ingredients: Water, Corn Syrup, Sugar) which are marketed to seniors, and it's a multi billion dollar business.

3)  Liquid Hope, the worlds only organic, whole food feeding tube formula (http://functionalformularies.com/products/liquid-hope), has a Medicare code (B4149).  In spite of this, patients continue to have a more difficult time getting approval for insurance coverage for Liquid Hope than they do more established formulas manufactured by the likes of Nestlés and Abbott. (File under: Things that make you go hmmm...).

4)  Speaking from personal experience and comparing notes with other "tubees", there are unhealthy side effects to the commercial formulas. Erratic gastrointestinal issues (and I'm being polite here), regurgitation which often results in aspiration, and spiking blood sugar levels are just a few. 

 There is a growing community of patients who have taken to "blenderizing" their own formulas. For those who have the time, the help and the willingness to do that, it's a viable and healthy option. But for patients not willing or able to prepare their own formulas, why should they have a harder time procuring a commercially made, Medicare approved, whole food formula than one which is now, by definition, considered unhealthy? 

In the coming  weeks we will be joining others to ask Congress to look into the nutritional content of these sugar loaded enteral formulas and supplements. In my opinion, it's a travesty that the sickest and most frail among us are being told by these global corporations that their products are "nutritionally dense" and full of healthy benefits.  

Patients and Seniors need to know - they deserve to know - what is going in their bodies. More important, they deserve equal access to healthy alternatives. 

Stay tuned for more...

*Note: These comments are my own and are not to be construed to be the opinion of Functional Formularies makers of Liquid Hope.

What Would You Do For A Dying Friend?

What would you do for a dying friend? Bruce Edwards was caddy for golfing great Tom Watson for 30 years. They were best friends. In 2003, Edwards was diagnosed with ALS. That same year Watson, with Edwards by his side, had a dream round at the U.S. Open. Watson shot 5 under par to grab a share of the first round lead. He used that moment to bring attention to Edward's battle with ALS. That was the last tournament Bruce Edwards caddied. He died 5 months later, at age 49. Watson has kept Bruce's memory alive by raising millions for ALS and doing the ice bucket challenge last year. 

The 18th hole at the First Annual Hope-JG Golf Scramble will be dedicated to Bruce Edwards. Each of the 18 holes that day will be dedicated to a family with ALS. Join us in August 18th at beautiful Va Halla  golf course in Cumberland. To register to play or to sponsor the event, go to: hope-jg.org.

If you can't make it or if you don't golf, please feel free to donate online at: http://www.hope-jg.org/#!donate/c1ghi or by sending a check to: PO Box 1805, Windham, ME 04062. Donations of $25 or more made between now and 8/18 will get a Hope-JG tee shirt (please specify size and gray, red or black color preference). We have several individuals who have generously sponsored the event as well. Sponsorship info at hope-jg.org.

Finally, if you're looking for a place to donate your ice bucket money this year, please consider donating to our foundation. You will help us get closer to building a world class ALS/MS Residence and promoting innovative technologies which enhance the lives of the disabled around the world.

#DoSomething

Man On A Mission

I don't know Chris Rosati. Well, I sort of know him, as well as you can "know" a Facebook friend you've never met. As well as you can know someone from the multiple "On The Road" segments of the CBS Evening News of which Chris has been the subject. As well as you can someone who has become a brother in arms by virtue of an ALS diagnosis.. Maybe I know him better than I think.

I reached out to Chris, as I suspect many did, with a Friend request on Facebook after the first "On The Road" story called "Grand Theft: Donut"(http://youtu.be/eMNVJZRIU9s). He graciously accepted and we've Liked some of each other's posts over the past year or so and exchanged a few messages.

Chris was one of the first people on the wish list of honorees for our foundation's first annual golf scramble coming up this August.

(http://www.hope-jg.org/#!golf-scramble-splash/cd1r). We will be dedicating each of the 18 holes to a person fighting, or lost to ALS and their families. We are honored to have Chris among the 18.

Chris is a man always on a mission. He's gone from being the "Krispy Kreme Guy" to a project called "The Butterfly Effect" (http://youtu.be/90PUAMv7-DM). 

Now, Chris has raised the bar for himself and for families with ALS across the country. More importantly, he's raising the bar for arguably the preeminent brand for ALS - the national ALS Association (ALSA). The same ALSA that collected around $120M from last year's Ice Bucket Challenge (IBC). Chris has publicly challenged the ALSA to issue a statement that they will cure ALS by the year 2021. To read the full text of his statement go to 

http://by2021.org. 

The Hope-JG Foundation has officially partnered with Chris and the "by2021" initiative. We are proud to do so. 

The IBC was a global phenomenon which brought ALS into virtually every home, back yard, locker room and office building in the developed world. With the leadership of Pat Quinn and Pete Frates, the IBC will happen again this year and the new motto is "Every August until there's a cure". Awareness of ALS has been raised. It's now time to focus on a cure. No need for brochures, balloons and banners. It's time to truly support the researchers and labs doing the heavy lifting. 

Chris has a plan. Like I said, he's a man on a mission. I'll let him roll his plan out when he's ready. Based on an email from him today, he's logging some heavy miles on his wheelchair and burning up his speech generating device.

For now, join us on what will be Chris' greatest mission to date. Visit http://by2021.org and start using #by2021 and #believe in your Tweets. 

It's time for a cure. And 6 years is more than enough time...if we get serious.

#by2021.