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Association of Gastrointestinal Motility Disorders, Inc. (AGMD)
Monthly Online Newsletter
February 2018
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In This Issue
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Quick Links
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* Announcements
* To My Valentines - Melissa Adams VanHouten
* The Impact Of Digestive Motility Disorders On The Family - Maryangela DeGrazia-DiTucci
* Some Helpful Caregiver Resources - AGMD
* Two Minutes In Time - Laura Schmidt
* Digestive Motility Myths And Facts - AGMD
* A Loving Tribute To Brittany Neal - Jeff Barski
* February In Medical History - AGMD
* Diffuse Esophageal Spasm (DES) - AGMD
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Announcements
February 28, 2018, is Rare Disease Day, an event designed to raise international awareness of the more than 6,000 rare diseases which affect an estimated 1 in 20 people worldwide. Together, we can make our voices heard and create positive change in our communities! For additional information and downloadable awareness materials, please see the Rare Disease Day website at
https://rarediseaseday.org
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Feeding Tube Awareness Week
February 5-9, 2018, is Feeding Tube Awareness Week, and we are honored to be able to assist in this awareness effort. The American Society for Parenteral and Enteral Nutrition (ASPEN) writes:
"The mission of Feeding Tube Awareness Week® is to promote the positive benefits of feeding tubes as life-saving medical interventions. The week also serves to educate the broader public about the medical reasons that children and adults are tube fed, the challenges that families face, and day-to-day life with tube feeding. Feeding Tube Awareness Week® connects families with others who are going through similar experiences."
ASPEN
You can find additional information about Feeding Tube Awareness Week at
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NEW - AGMD Monthly Survey
AGMD welcomes you to participate in our new monthly survey series. Each month, results of our previous survey will be posted along with a new survey which people may participate in.
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Mourning The Loss Of Brittany Neal
AGMD Volunteer, Program Outreach Administrator
We are deeply saddened to announce that Brittany Neal, AGMD volunteer, Program Outreach Administrator, and dear friend, passed away suddenly on February 4, 2018. Our hearts are broken and we will miss her greatly. Brittany played an instrumental role in AGMD, always willing to help in any way she could and share her compassion, understanding, knowledge and inspiring radiant sparkle for life with countless people. The spirit of her memory will continue to live on in our hearts always.
Brittany Alyssa Neal, age 32, of Carol Stream passed away Thursday, February 8, 2018 at Central Dupage Hospital in Winfield.
She was born April 5, 1985 in Winfield, Illinois to Richard and Michelle Neal.
Brittany is survived by the love of her life, Jeff Barski, and his parents Chris and Nada. Cherished by: her mother, Michelle of Carol Stream, three sisters, Danielle (George) Cerese of Roselle, Kourtney Chesney of Itasca and Sonja Heldt, three nieces, three nephews and her beloved dog, Minnie.
She was preceded in death by her father, Richard and a brother, Scott Neal.
Brittany graduated with honors from Glenbard North High School class of 2003.
Brittany spent the last two years of her life devoted to volunteering with the Association of Gastrointestinal Motility Disorders Inc. with her mentor MaryAngela DeGrazia-Di-Tucci.
In lieu of flowers, contributions may be made to Association of Gastrointestinal Motility Disorders, Inc. (AGMD), 140 Pleasant Street, Lexington, MA 02421. www.agmd-gimotility.org. To leave an online condolence for the family, visit the funeral home's obituary page at www.yursfuneralhomes.com. For more information, please call Yurs Funeral Home of St. Charles, 630-584-0060.
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H.R. 1187
The Functional Gastrointestinal and Motility
Disorders
Research and Enhancement Act of 2017
Please support H. R. 1187, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017, which was introduced in the House Energy & Commerce Committee by Rep. James F. Sensenbrenner, Jr. (R-WI), on February 16, 2017, and referred to the Subcommittee on Health on February 17, 2017. This bill would expand research, increase funding, and promote awareness and understanding of devastating functional gastrointestinal and motility disorders, which greatly impact the lives of millions of sufferers.
These disorders, which include gastroparesis, Irritable Bowel Syndrome, dysphagia, dyspepsia, GERD, Cyclic Vomiting Syndrome, and C
hronic Intestinal Pseudo-Obstruction
are truly life-altering, commonly debilitating or life-threatening, and often have few (or no) safe, reliable, and effective treatments or cures. The millions who suffer from FGIMDs deserve awareness and expanded educational efforts on their behalf, increased research funding, and better, more effective treatments or cures.
A brief summary of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017 as established by the Library of Congress reads as follows:
"This bill amends the Public Health Service Act to require the National Institutes of Health to expand, intensify, and coordinate its activities with respect to functional gastrointestinal and motility disorders (FGIMDs), including by:
- expanding basic and clinical research into FGIMDs by implementing the research recommendations of the National Commission on Digestive Diseases,
- providing support for the establishment of centers of excellence on FGIMDs,
- supporting innovative approaches to educating health care providers and patients regarding strategies that improve patient-provider relationships and care,
- directing the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) to provide the necessary funding for the continued expansion and advancement of the FGIMDs research portfolio, and
- directing NIDDK and the Eunice Kennedy Shriver National Institute of Child Health and Human Development to expand research into FGIMDs that impact children.
The Department of Health and Human Services may engage in public awareness and education activities to increase understanding and recognition of FGIMDs."
Thank you for your consideration!
*Please note: This bill was formerly known as H. R. 2239, H. R. 842 and H. R. 2311. All three bills died in previous congressional sessions; H. R. 1187 is the current (115th Congress) reintroduction. It is essentially a new bill and must begin the entire process again if it is to be passed. At the time of this writing, this bill had only 7 cosponsors, and we desperately need additional support. Skopos Labs, a data analysis company which evaluates congressional bills, has given H. R. 1187 only a 14% chance of enactment. (This seems bleak, but the bill received a mere 3% chance of enactment during the last congressional session). This bill must pass out of committee, be approved by both the House and Senate in identical form, and be signed by the president by January 3, 2019, to be enacted as law. If it fails at any point in the process, it must be reintroduced in the next congressional session and begin its journey again. The bill gains support with each reintroduction, but we need advocates to contact their representatives and encourage them to cosponsor the bill in order to make significant progress toward enactment.
Sources:
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"Embracing Each Day With Love And Gratitude"
Our New Volunteer!
AGMD is privileged to welcome Kate Piccolotti as a new volunteer to our organization. Kate is a remarkable multi-talented lady with a big heart. We are delighted to have her on our volunteer team.
"I have been a part of the amazing AGMD community since I was diagnosed with gastroparesis in 2011. My journey with this chronic illness is an interesting one, as I'm sure yours is too, but that's for another time."
"Over the years, I have worn a variety of different occupational hats in various states. Upon graduating from U of L School of Music (KY) I found my very "green" self amidst Jr. High School students teaching music. Unfortunately, academia does not instruct you as to how to "grab" students' attention, and boy, I learned quickly, so as not to "go down with the ship!" Three years later, I secured a position with a private school in Knoxville, TN where I designed and implemented their first music/theatre program. Fast forward four years when I decided it was time for a change. For six years I managed a health food store and then a health club. Then one day, a friend of mine called to say that she had been turned down for a Property Management position and that perhaps I should apply. I nabbed the position and thus began 25 years in Property Management which gave me the flexibility to begin teaching private piano lessons to some marvelous children and adults. Weary of Property Management, an opportunity on my bucket list was placed at my feet - Supervisor for Head Start, where I remained until my illness surfaced. Unable to care for myself, I was invited by my beautiful daughter and her loving husband to live with them in Texas. We now reside in California along with my precious four year old granddaughter who gives me the spiritual strength to embrace each day with love and gratitude for all that I have been blessed with."
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To My Valentines
By Melissa Adams VanHouten
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Valentine's Day comes with mixed emotions for me, as it is also the day I was diagnosed with gastroparesis, and, so, my thoughts and attention naturally turn to my own struggle rather than toward my loved ones, whom I sometimes forget live with this illness, too. But this February 14, I would like to focus on the true meaning of the day and offer a love letter of sorts to those who hold such meaning in my life and who patiently endure despite the hardships.
To my loved ones, I wish for you...
* to know and genuinely feel the love and appreciation I have for you. I value you above all others, and despite my sometimes-harsh words, raw emotions, unreasonable expectations and demands, and temper tantrums, you have never once disappointed me in any noteworthy way. You are the constants who add stability and meaning to my life, the ones I know I can count on, regardless of circumstances, no matter how difficult my days.
* to grasp how special and exceptional you are for finding the strength to withstand the cruel realities of this illness, to persist despite the horrors of gastroparesis which affect everyone in my life, but you far more than any others. You bear physical, emotional, financial, and spiritual burdens that directly flow from my diagnosis and which cannot be ignored but must be addressed daily. You are meaningfully and significantly impacted by my poor state of health; yet, rather than abandon, neglect, or disregard me, you exert endless effort to include, forgive, and accommodate me, and fully believe your lives are better with my presence than without. Many times, and in many instances, you have sacrificed material possessions, leisure activities, luscious meals, free time, and emotional peace because your love for and commitment to me outweighs your focus on "self."
* to live free from guilt and with a focus, if only for brief spells, on your own well-being and happiness. You are brave and kind for silently and patiently enduring the limitations placed upon me and upon you because of this illness. And though I am the one who must deal with the symptoms of this disease, you are impacted as well. You do your best to hide and downplay it, but I see the guilt and sorrow which haunt you when you choose to engage without me in celebrations, family gatherings, and school happenings, or, on the other hand, when you forgo those events because you are needed at home or do not wish to leave me alone. In truth, in my heart, and despite my sometimes selfishly voiced objections, it is my hope that you pursue the activities and endeavors which bring you joy, even if those pursuits do not include me. You have lives, dreams, and goals of your own, and you have already forfeited so many of these for my benefit. I want you to live the most "normal" lives possible without fear I will feel abandoned or excluded and without regret that you somehow "missed out" on opportunities.
* peace in your hearts and contentment in your souls. It is difficult to endure adversity, and it is almost never welcome, but you must seek joy, as do I, regardless of current circumstances. Serenity comes from inside and from knowing there is something beyond our current state, a purpose for our existence, an ultimate plan for our being - and it is possible to rest in that knowledge.
* to hope beyond hope and dream beyond what is rational that, one day, we will live free from the punishing effects of this illness, that there will be a cure, or a remission, or merely a more effective treatment, which allows us to once again participate in long-abandoned endeavors and which frees our lives from the burdens so cruelly imposed upon us. And short of this, I wish you joy in the times we have together and certainty of knowledge that I am grateful for each moment spent with you, even when I fail to express this.
What we have endured together has strengthened us, sealed our commitment, and united us for eternity. You are my one wish come true, all that I value and all that I love, happiness, contentment, fulfillment, and delight. You have made my life worth living and, despite the hardships, the sorrows, and the ever-increasing difficulties, I would trade this life for no other.
Melissa Adams VanHouten is a dedicated wife and mother who was diagnosed with gastroparesis in February of 2014. She is a former university political science instructor and corporate trainer who holds a B.S. in Political Science from St. Joseph's College and an M.A. in Political Science from Indiana State University. As an AGMD volunteer and creator and administrator of several online support and advocacy groups, she now spends her days advancing the cause of those who struggle to live with the sometimes devastating and life-altering effects of gastroparesis. It is her fondest desire to empower others to advocate for awareness, better treatments, and, ultimately, a cure.
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The Impact Of Digestive Motility
Disorders
On The Family
By Maryangela DeGrazia-DiTucci
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Digestive motility disorders not only affect the patient but can also greatly impact the patient's family and relationships. How anguishing it is for a parent to watch his/her child suffer and not be able to make the child better. How painful it is to watch a spouse, partner, parent, sister, brother, aunt, uncle, or grandparent endure a chronic illness where treatments may be limited ... where there may not be any cure ... where others may not understand ...
I've long felt the impact of my illness on my loved ones: worried looks, the concern etched on their brows, and bold attempts to conceal the tumultuous, torturous thoughts racing through their minds. Our shared sense of helplessness is redirected into quiet prayer, entwined with emotions of anger, frustration, fear, guilt, and heartache.
For every hospital emergency visit, hospital stay, crisis, or new symptom, my husband and family immediately respond with help, support, hope and faith. Amidst chaos, the family has become trained as to what their role is and with each recurrence, they go about with their cope with all that is happening. The event serves as a reminder that life is so very fragile and in one moment, things can change. It also serves as a reminder of how fortunate we are to have each other.
I am blessed to have such a wonderful husband and family who are always there for me, even if they cannot fully understand the scope of the realities that I face on a daily basis because I too try so desperately to shelter them from the pain.
Others, however, are not so lucky. Relationships can crumble and families can be torn apart .... after all, it is not easy when someone has a chronic digestive motility disease or disorder.
Chronic digestive motility diseases focus on the very essence of living ... food ... nourishment for the body to live and function normally. Most of us, cannot eat "normally." The bathroom always needs to be nearby ... just in case. Perimeters become smaller as patients fear that the symptoms may suddenly worsen. Plans become difficult to make because one never knows how they will feel at any given moment. Finances may become impacted as medical costs escalate, employment jeopardized, and income dwindled. Emotions may rise as both the patient, family members, and relationships struggle with the guilt, anger, bitterness, frustration, sadness, depression, and mourning of a life that once was. Siblings may begin to act-up and jealousy may prevail. Spouses and other family members want their needs to be met and may become angry and impatient. Caregivers may burnout from the stress, and both the patient and family unit struggle to live in a fractured world of illness.
There are ways to ease the burden of chronic illness, however. Communication and understanding are key in all relationships. Talking about the illness, feelings, and needs can all be beneficial. Learning about digestive motility disorders is paramount as well. This may help others to try to understand, at least in some respects, about these illnesses. The physician should be aware of both the patient and family's abilities to cope. Some people find religious organizations helpful in their times of need. Professional counseling should always be considered if the problems escalate to an intolerable level. And support groups such as the Association of Gastrointestinal Motility Disorders, Inc. (AGMD) can be of great benefit by providing information, support, education, and resources. It really makes a difference when people communicate with others who understand because they are traveling a similar journey.
Living with digestive motility disorders is challenging on a day-to-day basis, but working through each obstacle is certainly worth the effort ... because life is far too precious not to.
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Some Helpful Caregiver Resources
Helpful Articles
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Two Minutes In Time
By Laura Schmidt
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We often focus on the negative impact of chronic illness, but, on occasion, we are reminded that our experiences, though trying at times, serve to benefit others who are struggling. Ms. Laura Schmidt writes:
I had surgery yesterday to replace my Gastric Neurostimulator. All went great, but the thing that brought me the most joy was a two-minute exchange with the nurse who wheeled me to the door. We talked a little, and she said her niece had a lot of the same symptoms as I described for my gastroparesis, but that her niece remained undiagnosed. Then, she said, "My niece has POTS (Postural Orthostatic Tachycardia Syndrome)." I thought there could perhaps be a connection and suggested further evaluation.
As the nurse pulled out her pen and paper, I gave her the name of the test needed to diagnose gastroparesis (the Gastric Emptying Study), the location of the only motility specialist (and GES machine) in our state, the specialist's hospital location, and the name of a local gastroenterologist who treats gastroparesis. I am not sure if she passed the information on to her niece, but I was at least able to provide a piece of information that may get her niece a chance at a diagnosis. It took only two minutes, but as a result of my own experience with the gastroparesis nightmare, I may have actually changed someone's life for the better.
I cannot think of a better reason to be here!
Laura is a longtime patient with gastroparesis, diabetes and Barrett's Syndrome. She has been a member of AGMD for many years and previously served as a volunteer.
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Digestive Motility Myths And Facts
Myth
:
IBS only affects young women
Fact: IBS can affect any one at any age
"Although IBS does tend to occur more frequently in women, William D. Chey, MD says, "it's important that people know that there are many men diagnosed with IBS, and it also affects the elderly. In fact, there's some early evidence to suggest that IBS affects 8 to 10 percent of older individuals."
Dr. William Chey, MD, is a Professor of Internal Medicine, Director of the GI Physiology Laboratory, and Director of Medical Services for the Michigan Bowel Control Program at the University of Michigan. Dr. Chey's clinical and research interests include: diagnosis and treatment of irritable bowel syndrome (IBS), constipation, fecal incontinence; gastroesophageal reflux disease (GERD), and "H. pylori" infection.
References
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A Loving Tribute To
Brittany Neal
By Jeff Barski
What we have all lost here is beyond any words I can share. Brittany was without a doubt the strongest and most caring woman I have ever met. She didn't have many material things or wealth to share, but what she had in her heart and her spirit was felt by everyone that came into her life. Even when Brittany had nothing, she was still looking to give hope, help, courage, and love to anyone that needed it. Whether she was mentoring, tutoring, educating, or just listening, she has been helping others her entire life. As I was struggling to put these words together I read an article from the high school newspaper about the great odds Brittany overcame. Of course it is filled with praise for Britt, but the common theme was how positive Brittany was and how much she helped everyone else. She never used her disease as an excuse; instead, she used the lessons she had learned to help others.
I knew who Britt was since we walked the halls of Carol Stream School some 25 years ago. How could you not take notice of that contagious smile?! I know her life changed the first day of her freshman year when I sat down across from her in our second period foods class and said "Hi Brittany" with a warm smile on my face, punk rock t-shirt on and crazy purple hair on my head! She looked at me in complete shock not knowing who I was. By the end of that first hour she got over it and opened up to me. We had wildly different lifestyles, and led completely opposite social lives, but within a few short weeks we became such close friends. I was enamored with her, and she was with me. We had many ups and downs, and we might have had one, two, or even three summer romances. I even got the honor of spending Brittany's prom night with her, not at the dance though. She was too sick to attend, so I went to her house, cuddled on a big chair and watched a movie. Not anyone's dream prom night, except for her!
Deep down Brittany was a fierce fighter her whole life. She has been fighting this awful disease for nearly 33 years without backing down! For as long as I have known her, if there is something Brittany wanted, she would fight anything that stood in her way. The last few years of her life were extremely challenging but it never slowed her down or steered her away from the goals she set for herself. It sounds cliche, but every hurdle in her path made her grow stronger and she never looked back!
I had the pleasure of sharing a home with Brittany for the last four years and I was honored to get so close to her and share my life with her. She let me help her achieve things that she couldn't on her own. She also let me see her true self. Behind her gorgeous smile and shining eyes she was tired and at times barely scraping by, but that was NEVER going to stop her from fighting and working to make this world a better place. Every one of us was blessed to have this incredible soul touch our lives. Her charming and beautiful disposition was never affected by the struggles in her life. She is finally at peace, and she will never have to endure another shred of pain. We can all learn something from the role she led her entire life. She is a monument to what people can achieve no matter what cards they are dealt!
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February in Medical History
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February 1738 - French anatomist and surgeon Pierre-Joseph Desault is born. Known as one of the leading surgeons of France in his time, he developed a number of surgical instruments and introduced many improvements to
surgical practices
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February 29 - March 1, 1988 - National Institutes of Health Director James Wyngaarden assembles scientists, administrators and science policy experts in Reston, Va., to lay out a plan for the Human Genome Project.
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February 2001 - The International Human Genome Sequencing Consortium publishes a series of scientific papers in the February 15 issue of Nature [nature.com], providing the first analysis of the human genome sequence that describes how it is organized and how it evolved. One significant discovery reveals that there are only 30,000 to 40,000 genes, not 100,000 as previously thought.
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February 2002 - The National Human Genome Research Institute and the NIH Office of Rare Diseases launch the Genetics and Rare Diseases Information Center, delivering free and accurate information to patients and their families about genetic and rare diseases.
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February
1974 - Stephen Kovacs received a patent for a magnetic driven artificial heart pump.
The prototype heart had no moving parts and was entirely powered by a rechargeable battery pack. It used magnets arranged opposite one another in two chambers to replicate the human pulse rate. The motion of an actuator also regulated the heart's natural blood pressure range. It addressed the increasing need for smaller, lighter mechanical heart pumps.
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February 1911 - Willem J. Kolff invented the artificial kidney. In 1945, Kolff successfully treated his first patient, a 67 year old woman, from renal failure using his hemodialysis machine.
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February 1896 - Philip Showalter Hench was an American physician who discovered cortisone and won the Nobel Prize. In 1948-1949, cortisone was successfully tested on arthritic patients.
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Diffuse Esophageal Spasm (DES)
Diffuse esophageal spasm is a disorder which affects the motility or movement of food through the esophagus. In normal digestion, wavelike contractions called peristalsis propel food and liquid in a coordinated way. With diffuse esophageal spasm, however, these contractions become irregular. DES may be caused by the abnormal functioning of nerves that control the muscles used when swallowing.
Some possible symptoms may include:
- Pain (non-cardiac chest pain - mimics symptoms of a heart attack)
- Difficulty swallowing
- A feeling that something is stuck in the throat or center of chest
- Dry cough
- Regurgitation
- A burning sensation in the center of chest
- Chocking
There are some factors which may contribute to or worsen this condition:
- High blood pressure
- Anxiety or depression
- Drinking very hot or cold foods or drinks.
Some of the ways in which DES may be diagnosed include:
- Esophageal manometry study
- Barium swallowing study or Esophagram
- Upper endoscopy
- pH Testing
- Bravo test
Treatments may include:
Oral medications to relax the esophageal muscles such as calcium channel blockers or nitrates.
Botox injections
Myotomy
References
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We Welcome Your Submissions and Feedback!
Do you enjoy writing? Whether you keep a blog, journal, or just enjoy writing in general, we would love to hear from you!
AGMD welcomes and encourages patients and family members, as well as those in the medical, nutritional, and related healthcare communities, to share their stories and heart with others so that they may not feel so alone. If you ha
ve thought about writing articles, submitting poems, sharing your photos, or providing helpful tips, why not take a moment to enlighten others? Your words will be helping so many people!
Please note that submission of content is not a guarantee of publication, and AGMD reserves the right to edit all submissions as needed.
Email submissions to:
AGMD Lighthouse
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Don't miss out on The AGMD Beacon,
AGMD's quarterly publication for members!
Included in each issue
Advances in medical science, genetics, and clinical trials
Learn about diagnostic testing
Focus on a specific digestive disorder
Spotlight on inspiring patients and caregivers
Articles on health insurance, pediatrics, and mental health
Tips for our tubie readers
Humor, puzzles, poetry, and inspiration
Photo gallery of members, family, and pets
And more!
Interested in receiving this premium content? Join AGMD as a member with a suggested donation of $35.
AGMD offers an exempt program for those unable to afford dues
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The Association of Gastrointestinal Motility Disorders, Inc. (AGMD) is a non-profit international organization which relies on membership dues, corporate sponsorship, grants, and the generosity of individuals for funding. In 2016, we commemorated our twenty-fifth anniversary. It was a time to celebrate, but also a time to evaluate if our financial needs could continue to meet our many future goals and programs.
We ask for your tax-deductible donations throughout the year as a way of showing your support and commitment to our organization and its important mission.
AGMD is tax-exempt under section 501(c)(3) of the Internal Revenue Code.
Employee Identification Number: 04-3125259
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Our Mission
AGMD serves as an integral educational resource concerning digestive motility diseases and disorders. It also functions as an important information base for members of the medical, scientific, and nutritional communities. In addition, AGMD provides a forum of support for patients suffering from digestive motility disorders as well as their families.
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Association of Gastrointestinal Motility Disorders, Inc. (AGMD)
Serving as a Beacon of Hope since 1991!
Phone:
781-275-1300
Address:
140 Pleasant Street, Lexington, MA 02421
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SUBSCRIPTION
The AGMD Lighthouse is published monthly, by the Association of Gastrointestinal Motility disorders, Inc. (AGMD). All AGMD members receive an automatic subscription included in their membership.
DISCLAIMER
The opinions expressed in this publication may not necessarily be the opinions of AGMD. In addition, the organization may not necessarily endorse a product, advertisement, or event described in the publication.
The information contained in this publication should not be used as a substitute for professional medical care or advice.
AGMD has made every effort to insure accuracy of information, however, the organization is not responsible or liable for inadvertent materials.
COPYRIGHT
The AGMD Lighthouse is a copyrighted publication. No content may be copied in any form, either in part or in its entirety, without the expressed written consent of AGMD.
Inquiries and permission requests may be addressed to the AGMD International Corporate Headquarters. For previously copyrighted and published articles submitted by professional and/or general members, AGMD must have secured release permission from both the author and publisher.
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