Gastric Endoscopic Myotomy Showing Promise for Gastroparesis

This is an article copied from: http://www.medscape.com/viewarticle/863847#vp_1. I like to go back and read interesting breakthroughs when it comes back to gastroparesis treatment. Also, if you have had this procedure done, please email me your story: emilysstomach[at[gmail.com and I will include your story in this article, and whether it did or didn't work for you to let other GPers know. So far, the only clinic I know that does this procedure is Emory in Atlanta, GA.

Gastric Endoscopic Myotomy Showing Promise for Gastroparesis
By: Caroline Helwick
May 25, 2016

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RELATED DRUGS & DISEASES
Kidney-Pancreas Transplantation
All nine of the study patients were refractory to conventional treatment — including gastric electrical stimulation in two patients — for at least 6 months, had severe symptoms, had been hospitalized at least twice in the previous 6 months, and had disturbed gastric emptying.

Mean procedural time was 48 minutes. There were no peri- or postoperative complications, and all patients could eat 2 days after surgery and were discharged by day 5.

Clinical efficacy was very high; 85% of the patients had improved significantly after 1 month. One of the failures was a recurrence at 2 months in a diabetic patient with renal insufficiency.

Gastroparesis Cardinal Symptom Index (CGSI) score decreased from 3.5 before the procedure to 0.9 at 1 month (P < .001) and 1.1 at 3 months (P < .001). Improvements were also significant for nausea, vomiting, abdominal pain, gastric fullness, and early satiety at 3 months (P <.001 for all), but not for anorexia. Time to half gastric emptying was significantly better after the procedure than before (133 vs 222 minutes; P < .001). Improved quality of life was reported by 63% of patients. Table. Gastric Emptying Mean Residual Percentage Before G-POEM, % After G-POEM, % P Value At 2 hours 76 40 <.001 At 4 hours 44 19 NS Dr Gonzalez acknowledged that long-term follow-up is needed for these patients, as are prospective studies, which his group has initiated. Dr Khashab said G-POEM can be considered not only for patients with recurrent hospitalizations, but also "for any patient with nausea and vomiting that significantly affects their quality of life, even without hospitalization." Although some patients respond to simple medical therapy, metoclopramide carries a black-box warning for tardive dyskinesia "and is only marginally effective," and antiemetics provide only symptomatic relief, Dr Khashab pointed out. Before attempting G-POEM, endoscopists should be skilled at esophageal POEM, he added. Dr Gonzalez offered a few procedural tips: "Start at the 5 o'clock position from the pylorus, keep checking your direction, and stop at the pyloric arch." Dr John Vargo These results come from small case series, but they show "intriguingly positive results" in terms of symptomatic response and gastric emptying tests, said John Vargo, MD, from the Cleveland Clinic's Digestive Disease and Surgery Institute. "G-POEM is definitely something we have to look at," Dr Vargo Medscape Medical News. "For these patients, pharmacologic treatments are imperfect; medications have many different side effects. We do have another avenue with gastric pacing, but again, this approach is in its infancy." "I'm hopeful G-POEM will help these very sick people who have a very challenged quality of life," he said. "It's good to see these results, and I look forward to longer follow-up and a larger series of patients." Dr Khashab, Dr Gonzalez, and Dr Vargo have disclosed no relevant financial relationships. Digestive Disease Week (DDW) 2016: Abstracts Mo2015 and 715. Presented May 23, 2016.

Take Action: For Many Patients and Their Families, Advocacy is About Helping Themselves and Others

I did NOT write this but this article has a lot of great information in it and I wanted to hang on it it later, to use for research regarding advocacy. I like having all of my sources and things together.


(http://journals.lww.com/neurologynow/Pages/articleviewer.aspx?year=2016&issue=12010&article=00019&type=Fulltext)

By: Kunkle, Frederick

"Karen J. Smith started a support group for people with Parkinson's disease after she was diagnosed with the condition at age 42. When Michael Ellenbogen learned he had an early-onset form of dementia at 49, he used social media to build a community of people interested in finding a cure for Alzheimer's disease. After Catherine (Cathy) DeCreszenzo's husband, Joe, was diagnosed with spinocerebellar ataxia, a rare neurodegenerative disease that causes spastic body movements and problems with balance, she started educating herself about the disorder so she could help him and others. And since her diagnosis of amyotrophic lateral sclerosis (ALS) 19 years ago, Catherine G. Wolf has initiated research projects and fought on behalf of people with disabilities. These four people, and hundreds like them, choose to cope with their diseases by taking action. Whether they're raising awareness or money, participating in clinical trials, providing support, or pressuring politicians, advocates help bring about change that could benefit themselves, their families, and perhaps thousands of other people, now and in the future. Their firsthand experience of living with a neurologic condition gives them a unique perspective.

'Our whole mantra is we need people with the disease out in front,' says Veronica “Ronnie” Todaro, MPH, vice president of national programs at the Parkinson's Disease Foundation. 'It's a core philosophy of the foundation. 'For those who feel called to do more but don't know where to start, we asked patients and their families to trace their paths to advocacy.'

Picture taken from IMGUR.



START WITH YOURSELF

Advocacy begins at home, says Todaro. 'People who make the best advocates are those who have advocated for themselves first,' she says. 'It's hard to help others without your own plan in place.' The first step is to be as educated about your disease as possible. Then work with your doctor and support team to come up with treatment and care that ensures your quality of life. Don't be afraid to ask your doctor or medical team questions, and persist until you get answers, she says.That was an important lesson for the DeCreszenzos. In their search for the right neurologist for Joe, they were uncompromising about finding an expert who was committed to fighting on their behalf. They chose Joseph M. Savitt, MD, PhD, a neurologist at Johns Hopkins University in Baltimore, for his warm demeanor and willingness to answer questions at any time without sugarcoating, says Cathy.




FIND STRENGTH IN NUMBERS

By joining a support group, people often find the courage to speak louder for themselves and others. It emboldened the DeCreszenzos to start their own support group in Newark, DE. When Joe was first diagnosed with ataxia, the couple traveled to Chesapeake, MD, to join a group sponsored by the National Ataxia Foundation. In the early days, the group was especially important because ataxia is extremely rare, Cathy says. Only about 150,000 people in the United States are known to have the condition. Just talking with others fighting a similar disease was helpful, she says. 'They tell you about their challenges, you tell them about yours. You compare notes and see if you can help each other.' Smith, 56, who was diagnosed with Parkinson's disease about 14 years ago after she noticed a tremor in her left ring finger, kept quiet about her disease initially. 'I didn't want people to know I had it,' she says.

Her advocacy work began when she formed a support group. From there she established a walk to raise awareness about the disease. She took out books at her local library and asked librarians to put up displays about the disorder. She signed up for newsletters and attended conferences when she could, and she even visited the US Food and Drug Administration (FDA) to learn more about the drug approval process. She joined clinical trials. With every step she became more confident and less depressed, she says. 'By becoming involved, I think I'm making a difference in people's lives. I can say, ‘I know what you're going through. You'll make it.’”

Found at: http://datab.us/Search/Gastroparesis.



RAISE YOUR HAND

Volunteering was another crucial step on the DeCreszenzos' path to advocacy. Together, Joe and Cathy have organized fundraisers, including one in September that raised more than $10,000 for research. Joe, 67, now serves on the National Ataxia Foundation's board of directors. Along the way, Cathy, 60, says she discovered new strengths. 'Asking for money comes very easily to me because I know it's needed,' she admits. 'Being an advocate helps me deal with what's happening to my family. Every year I get stronger.' The cause has taken on new urgency for the DeCreszenzos since learning that Joe's ataxia is hereditary and one of their daughters has tested positive for the disorder.





JOIN A TRIAL

Besides contributing to research that could lead to a cure or better treatments, participating in a clinical study gives advocates credibility to encourage others to join. The Parkinson's Advocates in Research program, created by Todaro, looks for individuals who have participated in studies. It has trained more than 230 people with Parkinson's disease or their caregivers on how to guide researchers and find ways to work together in the search for a cure. Many advocates who work with the foundation have been in dozens of clinical trials. 'It's taking control of your disease,' Todaro says. 'It's saying, ‘I can play a role in making things better.’'If you participate in a clinical trial, use that opportunity to establish a relationship with the scientists, investigators, and institutions involved. These people are often in the best position to effect change. Being able to communicate concerns also helps ensure that studies focus on the right issues and that researchers design them to be effective and humane,' Todaro says. In September, for example, Parkinson's disease advocates met with the FDA to highlight symptoms and side effects of the disease for which no treatments currently exist, she says.





GET TRAINING

To hone your skills as an advocate, reach out to the national organization for your disorder. The Parkinson's Disease Foundation, for example, has a nationwide program, the People with Parkinson's Advisory Council (PPAC), to identify advocates and leaders, evaluate their abilities and talents, and provide further education and training to support their public advocacy. The council's 14 members serve as advisors on the foundation's research, education, and advocacy programs.

Taken from IMGUR.





GO PUBLIC

For some, the logical extension of their advocacy is speaking to the public, either through media interviews, public forums, or in front of Congress. That's where Ellenbogen, 57, ended up after first establishing a presence on LinkedIn, where he ultimately connected with 6,000 people who could help him understand Alzheimer's or work toward a cure. Ellenbogen, who has lived with the disease for eight years, has worked hard to ensure that the testimony of people with dementia is included in public forums and panels.Ellenbogen's dedication to speaking out earned him an invitation to the World Health Organization forum in Geneva in March 2015; he was the only person with dementia attending who was not there as part of an organization. His letters have been included in the Congressional Record, and he received an appointment to the Pennsylvania Alzheimer's Disease State Planning Committee. 'You're going to get a lot of people telling you ‘no’ and ‘it can't be done.’ You go around those people. You find a way. Don't accept it when someone tells you it can't be done,' he says.






BUILD MOMENTUM

When his mother-in-law was diagnosed with Alzheimer's disease, George Vradenburg, former chief counsel for AOL, started by educating himself about the disease. Then he hosted a gala dinner for the local Washington, DC, chapter of the Alzheimer's Association. As the circle of invitations grew wider, the gala became national. Vradenburg, who was accustomed to moving among the business and political elite of DC, teamed up with former House speaker Newt Gingrich to create a national Alzheimer's study group. Established with the bipartisan support of the Congressional Task Force on Alzheimer's Disease, the group, which included former Supreme Court Justice Sandra Day O'Connor, was charged with developing a coordinated national plan to fight the disease.Still frustrated that not enough was being done, Vradenburg and his wife, Trish, a writer and former journalist, formed USAgainstAlzheimer's in 2010. The philanthropic group has pushed the federal government to adopt timetables for finding a cure or better treatments and has set its sights on accelerating the drug approval process.





ESTABLISH A CHARITY

The impulse to start a foundation or charity is often strong after a devastating diagnosis or event, but Vradenburg suggests that you first think about what you hope to accomplish. Large donors might fund a building for research or back a team of researchers. Others might choose to focus on caregiving, which could mean donating to a specific facility or to research on caregiving, such as using music to alleviate the symptoms of dementia. “Find your purpose. It's not enough to say, ‘I want to cure Alzheimer's,’” Vradenburg says. “Of course you do. Focus on a piece of the issue that matches your budget and fits your passion and where you can have the biggest impact.”

This was found a Google Image search because I wanted people to understand what it's like to have GP.

This was shared to me by a friend and I love what it says.





PLAY TO YOUR STRENGTHS

Wolf, who was at the top of her field in research psychology when she was diagnosed with ALS in 1996, says the will to keep going helped in her legal fight against an insurer that denied her home care 10 years ago, and it's what recently drove her to help revamp the Westchester Library System's website so it's easier for people with disabilities to use. An expert on interaction between humans and technology—she once worked at IBM's Thomas J. Watson Research Center—Wolf, now 68, continues to conduct research on how people with disabilities interact with computers. She also writes articles about living with ALS and posts disability news to her Facebook page. She types by raising and lowering her eyebrows to trigger a computer switch inside a headband.





EVERY STEP COUNTS

Advocacy isn't just about grand gestures. It can be as straightforward as ensuring that the local library has displays or pamphlets about your disease. Or trying to establish a commemorative month for a particular disorder. Or signing an email petition.As Ellenbogen says, anyone can be an advocate. 'If you write a letter to Congress once in a while or reach out to people in some small way to change attitudes, you're still being an advocate,' he says. Vradenburg agrees. Just the act of acknowledging the disease, which isn't always easy given the stigma associated with some neurologic conditions, is a big and brave first step, he says. 'Telling your story has an effect on the person hearing that story. It also has an effect on the person telling the story,' says Smith. 'I wasn't an advocate on day one or day 100. It took me several years. Now it's what makes my life meaningful. The day I stay home is the beginning of the end. I'll rest when I can't get out of bed.'
© 2016 American Academy of Neurology"

I borrowed this from GPACT, because this image is right.



If you want to be an advocate, it is going to take a lot for to work towards it. It means spending a lot of your hours and free time researching things, organizing groups, events, etc. It takes a lot of work but think of all of the people you would be helping who really have no one else to turn to. I hope this article spoke with you, like it did with me.