Saturday, December 28, 2019
“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. That’s why I’m posting this on her birthday. Out of mad respect of what she does for me and for ALS families everywhere every day.
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. Now, thanks to Donna York Of HARK, she drives our second ‘Hopemobile’ and me to events, meetings and Doctor appointments. That includes driving to Boston for appointments at MGH and Spaulding to troubleshoot my weakened neck and with that, revisiting my wheelchair configuration. Driving to Boston is easy. Driving to Boston, after waking at 4 AM to get me toileted, cleaned, pack my food and travel necessities in the van, get herself showered and maybe fed and be sure we hit the road in time for the two hour trip is exhausting-even with help. And the ride home with me often asleep in the back, after a stress-filled day (even visits where everything clicks are stress-filled). Linda often is wiped out after Boston trips, but she gets up the next day and carries on.
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 "Whatchu looking at?" stare 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.
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. Earlier this year, we realized that the tenuous method we had developed to get me on the toilet was simply too dangerous for both of us. Over 12 years we’ve become adept at adjusting to new hurdles presented by the progression of ALS. So, we’ve adapted to this challenge too. I now use our dining room as a bathroom. I’ll spare the details but they can be found in our May 31st Blog at: http://hope-jg.blogspot.com/2019/05/
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 continued 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.
The most significant accomplishment of 2019 was certainly getting Linda’s Caregivers Bill signed into law by Governor Mills. Linda was the inspiration behind the bill. I say she was the inspiration for the bill with a bit of my tongue in my cheek. She actually bent poor Representative Patrick Corey’s ear long enough on our front landing to a point where she made her case with a purpose few professional advocates posses.
Every day, whether it's a broken leg, an aggressive form of cancer or one of millions of possible afflictions, Moms and Dads, Husbands 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 twelve 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 week, and turn it into a daily habit throughout the year. We recently had a group of friends, some of whom we’ve never met, show up and shower us with love demonstrated by flowers, chocolates, meals for Linda and hugs. They also showed love by cleaning our gutters, cleaning and organizing our garage, dusting, vacuuming, taking down drapes and washing them and organizing our wall unit. At the end of a hectic afternoon, they gathered in the living room and prayed for us. That kind of support will sustain us for a long time.
Caregivers not only deserve our support, they deserve respect and care themselves. I’ll never be able to repay Linda for the sleepless nights, the emotional and physical exhaustion and the worry ALS has brought to our marriage. 12 1/2 years ago, when we thought ahead to this time in our lives, we thought we’d be traveling , reconnecting with friends and enjoying the fruits of our combined labor. Instead, we spend most of our waking hours focusing on keeping me going, some on dealing with the mountains of papers that come with ALS and the rest we spend on what has become our passion - helping other families fight “the beast”.
I worked on this for awhile with the goal of posting it on her birthday, December 28th. If you will, please join me in wishing my dream girl, caregiver and wife and your tireless (and often far too quiet about what she does for ALS families) advocate, a very happy birthday. Drop her a PM, text her if know her number or comment wherever you see this posted. Happy Birthday Babe. Love you until the end of time. 😘⚓️💪🏼❤️❤️❤️❤️
Saturday, November 23, 2019
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.
Saturday, October 19, 2019
He’s been working hard on several projects and has required a lot of back and forth with emails, which as of late take more and more time and energy to compose. But with one good typing finger doing the work, he perseveres. I marvel as I see him sitting in his wheelchair hooked up to his feed, continuing to be productive in meeting the needs of others. I say that he does what he does not for “the praise or glory”...that is for God. But because God’s given him, after almost 12 years, the strength to do what he does every day.
John’s not alone. We’ve seen some of the strongest advocates for ALS be those that are affected by the very same disease. Our Foundation is a means to fill a need we saw many years ago when we planted the seed of Hope-JG. When a thought crosses your mind and is buried in your heart, you know you need to nurture it and see where it will take you.
It’s been 5+ years since we decided that we knew all too well the challenges of living with ALS and there must have been a better way to help those in need. It’s not an easy task always...heartbreaking most of the time to hear stories of the needs. Basic needs that are no longer “basic”. Accessibility in and out of the home. Accessibility to a bathroom, nutritious food once a feeding tube is placed. The ability to still communicate once your speaking voice is gone or the ability for a family to have a way to be transported and included in a family reunion. Once bound to a wheelchair these basics are no longer “basic”. They are challenges that need to be met with dignity and love from knowing hearts.
Yes, we’re a Foundation with all the administrative, legal and financial stuff that goes with running a foundation. Thank God for our amazing Board. Ultimately we want to be the ALS family member that reaches out and comes along side a pALS facing these “mountains” and move those mountains.
I watched yesterday as John emailed with a company we collaborate with that he pursued until they caught the vision of how they could help. And later in the day I helped him Skype with another person we have worked with and now have a valued friendship with after seeing her speak on TedTalks. (She is creating “voices for those without voices”.) Then back to his email with one finger to coordinate a upcoming accessibility project for a pALS.
And that was just yesterday. I share all this as his proud wife, as I watched this morning a flood of ‘Likes’ to our foundation page (https://www.facebook.com/Hjgorg/). (Thank you!) This is never about us...we can’t do this without all your support. This is also about what you can accomplish when a seed is buried in your heart, no matter what your circumstances are. Able bodied or challenged, pursue that seed until it grows and bears fruit.
When John was diagnosed 12 years ago, I knew that wasn’t the end of our story. I knew it was an open door to walk through to see what God had in the other side for us. We refused to accept his life was over before its time. God is faithful if we trust Him and give it all to Him. It’s been quite an experience and we’ve grown personally from it. We’ve walked along side those God has given us to help, sharing their needs and their hope...in what may appear to be a hopeless situation, there’s always hope!
Unfortunately when you are diagnosed with a disease like ALS and you begin to have needs, that’s when some of the hardest battles start. The needs are great and Insurance doesn’t always meet such profound needs.
So as he wakes up and our day starts with “getting him going”, he’s ready to get back at it. You may wonder...why? Because once you know what this life with ALS is and you have the ability to do something, you must do your part to make this horrible disease easier. We are the tiniest cog in a huge wheel trying to change the disease. We have fellow warriors fighting for a cure, to change laws to try drugs that have the potential to reverse this disease. Others raising awareness and funds to support a cure. Foundations run by family members like ours trying to fight back when ALS walks in and tries to steal your life. It’s all needed. It all helps. Every bucket of ice dumped, every golf scramble attended, every fundraiser donated to could be the one that holds the cure or provides help that’s desperately needed.
The one thing we’ve seen every time we’ve met a new patient is “gratitude” to those they have never met. If you’ve donated or helped in any way, thank you! While John and I may be the faces of Hope-JG, as many others like us are working to change ALS are the faces of ALS, it’s your generous hearts that have made everything possible.
Thank you and God bless you. Today’s another day to change ALS, one project and one person at a time ❤️⚓️ There’s always hope!
Friday, May 31, 2019
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.
Thursday, January 3, 2019
On a personal note: I’m humbled and thankful for breaking through the 11 year mark with ALS with my amazing wife, caregiver and Co-Fouñder Linda. There’s no question that I wouldn’t be here and this foundation wouldn’t exist without her tenacity, instincts, passion and boundless love.
We’re also thankful for our seven Innovators Each of these individuals brings a unique perspective and life experience to their individual area of expertise. They also share one common trait - a passion to help the hurting.
We’re particularly thankful that three of the seven Innovators are strong, visionary women. We were just notified that Robin Gentry-McGee, Founder and CEO of Functional Formularies (http://www.functionalformularies.com/) was just named as one of 35 World Changing Women In Conscious Business (#27 in this article).(https://consciouscompanymedia.com/sustainable-business/35-world-changing-women-in-conscious-business-2019/).
A common trait Robin shares with her sister Innovators is refusing to accept the status quo for hurting people. All three have specific life experiences that were “lightbulb moments” which inspired their innovations.
For Robin, her Father sustained a traumatic brain injury and Doctors painted a bleak picture for his recovery. He was in a coma and required tube feeding. During a hospital visit Robin read the ingredient list on her Dad’s
formula package. That was her lightbulb moment. The unfortunate standard of care in hospitals for tube fed formulas are formulas which are loaded with sugars, cheap carbs and artificial vitamins.
formula package. That was her lightbulb moment. The unfortunate standard of care in hospitals for tube fed formulas are formulas which are loaded with sugars, cheap carbs and artificial vitamins.
As a trained Chef who had worked only with organic foods, Robin knew instinctively her Dad needed real food to have any chance for recovery. After much experimentation in her home kitchen Robin found a combination of legumes, vegetables, oils, spices and other real food ingredients that replaced the hospital formula. Her Father improved So much improvement that the day cane where her Dad stood up and shook the hand of one of the Doctors who told Robin he’d never recover The Doctor told Robin “What you done here is a miracle.” Food as medicine - what a concept. Robin launched Functional Formularies and over just five years has helped thousands of adults and children improve their quality of life with her products Liquid Hope & Nourish.
Then we have Dr. Rupal Patel, Founder and CEO of VocalID (https://vocalid.ai/ ). Rupal was teaching speech language pathology and associated curricula at Northeastern University when she had her lightbulb moment. Rupal was at a Conference with other educators, clinicians and patients. When she heard conversations involving speech impaired patients “speaking” using devices pre-loaded with synthetic voices. It struck her that many of the patients, whether a 12 year old girl or a 55 year old man, were often using the same voice. As Rupal says in her first TED Talk: “We wouldn’t dream of giving a prosthetic leg of a grown man to a young girl. Why then, the same prosthetic voice? I wanted to do something about this.”
The result was the creation of a unique process of combining digital recordings of a healthy donor voice with any sound from the recipient/patient. The product of the process is a synthetic voice that contains the “vocal DNA” of the patient with the vocal clarity of the donor. A voice that is unique to that individual. A voice that makes them distinctive - again.
Rupal has been recognized in a number of publications including Wired, the Wall Street Journal, NPR and more. She was also recognized as a “Top Women in Cloud” by CloudNOW. (https://youtu.be/F-qwuG8Eweo)
Our newest Innovator is Julie Lineberger, Founder and CEO of WheelPad (https://www.wheelpad.com/). Julie’s lightbulb moment came as a result of a tragic accident that left her Godson, Riley Poor, a tetraplegic. After Riley’s rehabilitation he had a challenging time finding an accessible apartment. When he decided to buy a house, he worked with Julie and her husband Joe’s firm Linesync Architecture to make the home accessible From the time of Riley’s accident to completion of the home renovations was three years. But not everyone in Riley’s situation is related to an architect.
This experience caused Julie to work with Riley and Joe to develop a solution for others who would find themselves in a similar position. The result is WheelPad
We are honored to be associated with these amazing women. We wish them all the best in 2019. We thank them for their collective passion, heart but most of all, for their friendship.