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Friday, July 15, 2016

Information about The Vagus Nerve

Dedicated to Cheryl, my inspiration for this article.


Image taken from: http://autismcoach.com/blog-info-articles/the-vagus-nerve-core-piece-of-the-autism-puzzle-part-1-what-is-this-and-why-is-it-important

I know I try not to cite too many articles but I wanted to cite this one. It has really great information about the vagus nerve and what it does for your body. I do not know much about the vagus nerve, so I need help with research about it, hence the quoted articles. I'm curious as to if the vagus nerve, if damaged and causes gastroparesis, might cause other issues as well. It's a question I've had on my mind for a long time. I know some of my friends have heart issues and the vagus nerve runs by the heart. I also know that I get what I call, "gp fog" which could be a result of a damaged vagus nerve. So, I wanted to do some research into it and try to answer some of my questions and hopefully, educate and answer some of your questions as well. Maybe the more exposure we bring to complications like this, the doctors might be able to take the information and do something with it - with research or anything that could help us.



"The vagus nerve provides 75% of all parasympathetic outflow. When the brain triggers parasympathetic activation, the vagus nerve carries the messages to the heart (decreasing the heart rate and blood pressure), to the lungs (to constrict the respiratory passageways), to every organ in the digestive system (to increase motility and blood flow to the digestive tract, to promote defecation), to the kidneys and bladder (to promote urination) and to reproductive organs (to aid in sexual arousal).

2. It communicates messages between the gut and the brain. 80% of the vagus nerve’s fibers (4 out of 5 traffic lanes) deliver information from the enteric nervous system (the second brain in the gut) to the brain.

3. It regulates the muscle movement necessary to keep you breathing. Your brain communicates with your diaphragm via the release of the neurotransmitter acetylcholine from the vagus nerve to keep you breathing. If the vagus nerve stops releasing acetylcholine, you will stop breathing.

4. It helps decrease inflammation. About 15 years ago neurosurgeon Kevin Tracey and his colleagues found that a tiny amount of an anti-inflammatory drug in rats’ brains blocked the production of an inflammatory molecule in the liver and spleen. How did the signal get there? The researchers began cutting nerves one at a time to find the ones responsible for transmitting the anti-inflammatory signal from brain to body. “When we cut the vagus nerve, which runs from the brain stem down to the spleen, the effect was gone,” says Tracey, president and CEO of the Feinstein Institute for Medical Research in Manhasset, N.Y. Later they discovered that stimulating undamaged vagus fibers also had anti-inflammatory effects in animals (without the drug), which they attributed to the release of the neurotransmitter acetylcholine by the vagus nerve.


5. It has profound control over heart rate and blood pressure. For example, patients with heart failure, in which the heart fails to pump enough blood through the body, tend to have less active vagus nerves. Currently multiple studies are underway investigating the effects of vagus stimulation on patients with heart failure and atrial fibrillation (where the heart flutters erratically).

6. It helps improve your mood. Research shows that stimulation of the vagus nerve can be an effective treatment for chronic depression that has failed to respond to other treatments. Electrical stimulation of the vagus through a surgically implanted device has already been approved by the U.S. Food and Drug Administration as a therapy for patients who don’t get relief from existing treatments.

7. It is essential in fear management. Remember that “gut instinct” that tells you when something isn’t right? Turns out that the vagus nerve plays a major role in that. The signals from your gut get sent to the brain via the vagus nerve, and the signals from the brain travel back to the gut, forming a feedback loop. What if this loop was interrupted – wondered the researchers in a new Swiss study – would that affect innate anxiety and conditioned fear? Turns out it does. In test animals, the brain was still able to send signals down to the stomach, but the brain couldn’t receive signals coming up from the stomach. The research showed that those rats weren’t that afraid to begin with (lower level of innate fear), but once they became afraid, they had trouble overcoming this fear even when the danger was no longer present (longer retention of learned fear). This shows that healthy functioning of the vagus nerve helps us bounce back from stressful situations and overcome fear conditioning.

8. It plays a role in learning and memory. The same Swiss study (above) found that the rats without gut instincts transmitting to the brain via the vagus nerve required significantly longer to re-associate previously “dangerous” environment with the new, “safe” and neutral situation. This shows that the vagus nerve facilitates learning and re-wiring, so to speak. “These new findings about the vagus nerve offer exciting possibility for the treatment of post-traumatic stress disorder (PTSD). Stimulation of the vagus nerve might be able to speed up the process by which people with PTSD can learn to reassociate a non-threatening stimuli which triggers anxiety with a neutral and non-traumatic experience”(1). It can also help with healing sexual stress and trauma.

9. It can help relieve cluster headaches. The company electroCore, based in Basking Ridge, N.J., manufactures a small, handheld device that can stimulate the vagus when placed on the throat. The company initially tested the devices to reduce asthma symptoms — relying on the nerve’s anti-inflammatory action. But during testing, patients reported that their headaches were disappearing, says J.P. Errico, CEO of electroCore. Now, the company is investigating the use of an electroCore device to treat chronic cluster headaches." This information was given by: https://www.yogauonline.com/yogau-wellness-blog/vital-vagus-what-vagus-nerve-and-what-does-it-do



The gastric branches (rami gastrici) supply the stomach. The right vagus forms the posterior gastric plexus and the left forms the anterior gastric plexus. The branches lie on the posteroinferior and the anterosuperior surfaces, respectively.

The celiac branches (rami celiaci) are derived mainly from the right vagus nerve. They join the celiac plexus and supply the pancreas, spleen, kidneys, adrenals, and intestine.

The hepatic branches originate from the left vagus. They join the hepatic plexus and through it are distributed to the liver.

Images from: http://autismcoach.com/blog-info-articles/the-vagus-nerve-core-piece-of-the-autism-puzzle-part-1-what-is-this-and-why-is-it-important/


"What happens in the vagus nerve, it turns out, doesn’t stay in the vagus nerve. The longest of the cranial nerves, the vagus nerve is so named because it “wanders” like a vagabond, sending out fibers from your brainstem to your visceral organs. The vagus nerve is literally the captain of your inner nerve center—the parasympathetic nervous system, to be specific. And like a good captain, it does a great job of overseeing a vast range of crucial functions, communicating nerve impulses to every organ in your body. New research has revealed that it may also be the missing link to treating chronic inflammation, and the beginning of an exciting new field of treatment that leaves medications behind. Here are nine facts about this powerful nerve bundle.

1. THE VAGUS NERVE PREVENTS INFLAMMATION.
With a vast network of fibers stationed like spies around all your organs, when the vagus nerve gets wind of the hallmarks of inflammation—cytokines or the inflammatory substance tumor necrosis factor (TNF)—it alerts the brain and elicits anti-inflammatory neurotransmitters via the cholinergic anti-inflammatory pathway. A certain amount of inflammation after injury or illness is normal. But an overabundance is linked to many diseases and conditions, from sepsis to the autoimmune condition rheumatoid arthritis.


2. IT HELPS YOU MAKE MEMORIES.
A University of Virginia study showed success in strengthening memory in rats by stimulating the vagus nerve, which releases the neurotransmitter norepinephrine into the amygdala, consolidating memories. Related studies were done on humans, opening promising treatments for conditions like Alzheimer’s disease.


3. IT HELPS YOU BREATHE.
The neurotransmitter acetylcholine, elicited by the vagus nerve, literally gives you the breath of life by telling your lungs to breathe. It’s one of the reasons that botox—often used cosmetically—can be potentially dangerous, because it interrupts your acetylcholine production. You can, however, also manually stimulate your vagus nerve by doing abdominal breathing or holding your breath for four to eight counts.


4. IT’S INTIMATELY INVOLVED WITH YOUR HEART.
The vagus nerve is responsible for controlling the heart rate via electrical impulses to the sinoatrial node of the heart, where acetylcholine release slows the pulse. The way doctors determine the “tone” or “strength” of your vagus nerve (and your cardiac health) is by measuring the time between your individual heart beats, and then plotting this on a chart over time. This is your 'heart rate variability.'


5. IT INITIATES YOUR BODY’S RELAXATION RESPONSE.
When your ever-vigilant sympathetic nervous system revs up the fight or flight responses—pouring the stress hormone cortisol and adrenaline into your body—the vagus nerve tells your body to chill out by releasing acetylcholine. Its tendrils extend to many organs, acting like fiberoptic cables that send instructions to release enzymes and proteins like prolactin, vasopressin, and oxytocin, which calm you down. People with a stronger vagus response may be more likely to recover more quickly after stress, injury, or illness.


6. IT TRANSLATES BETWEEN YOUR GUT AND YOUR BRAIN.
Your gut uses the vagus nerve like a walkie-talkie to tell your brain how you’re feeling via electric impulses called “action potentials". Your gut feelings are very real.


7. OVERSTIMULATION OF THE VAGUS NERVE IS THE MOST COMMON CAUSE OF FAINTING.
If you tremble or get queasy at the sight of blood or while getting a flu shot, you’re not weak; you’re experiencing “vagal syncope.” Your body, responding to stress, overstimulates the vagus nerve, causing your blood pressure and heart rate to drop. During extreme syncope, blood flow is restricted to your brain, and you lose consciousness. But most of the time you just have to sit or lie down for the symptoms to subside.


8. ELECTRIC STIMULATION OF THE VAGUS NERVE REDUCES INFLAMMATION AND MAY INHIBIT IT ALTOGETHER.
Truly breaking new medical ground, neurosurgeon Kevin Tracey was the first to prove that stimulating the vagus nerve can significantly reduce inflammation. Results on rats were so successful, he reproduced the experiment in humans with stunning results. The creation of implants to stimulate the vagus nerve via electronic implants showed a drastic reduction, and even remission, in rheumatoid arthritis—which has no known cure and is often treated with the toxic cancer drug methotraxate—hemorrhagic shock, and other equally serious inflammatory syndromes.


9. VAGUS NERVE STIMULATION HAS CREATED A NEW FIELD OF MEDICINE.
Spurred on by the success of vagal nerve stimulation to treat inflammation and epilepsy, a burgeoning field of medical study, known as “bioelectronics,” may be the future of medicine. Using implants that deliver electric impulses to various body parts, scientists and doctors hope to treat illness with fewer medications and fewer side effects."
Information from: http://mentalfloss.com/article/65710/9-nervy-facts-about-vagus-nerve


I'm sorry for all of the block quotes. I really don't know much about the vagus nerve, so I wanted to read up on it. I feel like it's something I should be aware of since I have Gastroparesis and a damaged vagus nerve and I wanted to spread the knowledge to you. Feel free to do more research on the matter and if I have left out any important information, let me know. I did not know that the vagus nerve can control your "gut feeling." I'm still learning about gastroparesis and what it is doing to my body. I know a lot of my friends have a hard time remembering things, myself included, and a lot of my friends have heart issues. I wonder if it's all related to the damaged vagus nerve by the stomach. I would love a doctor to do research and confirm what a damaged vagus nerve can do to the whole body, and not just the stomach.

The Mayo Clinic offers treatment for a stimulation of the vagus nerve. Their website says,

"Vagus nerve stimulation is a procedure that involves implantation of a device that stimulates the vagus nerve with electrical impulses.

There's one vagus nerve on each side of your body, running from your brainstem through your neck to your chest and abdomen.

Vagus nerve stimulation is most often used to treat epilepsy when other treatments haven't worked. Vagus nerve stimulation is also a treatment for hard-to-treat depression that hasn't responded to typical therapies.

Researchers are currently studying vagus nerve stimulation as a potential treatment for a variety of conditions, including multiple sclerosis, headache, pain and Alzheimer's disease.

In conventional vagus nerve stimulation, a device is surgically implanted under the skin on your chest, and a wire is threaded under your skin connecting the device to the left vagus nerve. The right vagus nerve is not used because it carries fibers that supply nerves to the heart.

When activated, the device sends electrical signals along the vagus nerve to your brainstem, which then sends signals to certain areas in your brain.

New, noninvasive vagus nerve stimulation devices, which do not require surgical implantation, have been approved for use in Europe to treat epilepsy, depression and pain but have not yet been approved for use in the U.S.

An implantable device that stimulates the right vagus nerve is also under study for the treatment of heart failure."
Source: http://www.mayoclinic.org/tests-procedures/vagus-nerve-stimulation/home/ovc-20167755

I hope one day, there will be some kind of treatment to help those with gastroparesis that includes the vagus nerve. I'm optimistic and I'm hoping there will be research into the matter. If we could repair the vagus nerve in some way, it would save so many lives, or even find treatment to get it to work properly. I'm not going to lose hope.


Source: http://thehigherlearning.com/wp-content/uploads/2015/05/vagus-nerve.jpg


Thursday, June 23, 2016

In Memorium of Those Fallen GP Warriors - Honor Their Memory with Virtual Advocacy Day




Melissa's Blog - "Virtually Alive."




Her Blog can be found here: http://melissarvh.blogspot.com/2016/06/virtually-alive.html



I wanted to post the link to her blog because this event that she is putting together is the best event I've seen in a while. We need people to listen to us that we're sick, that we have gastroparesis, and we don't have enough awareness, research, to even get a cure. I feel like we're screaming about it but no one is listening. If you own groups and have admins, please join Gastroparesis Alliance: https://www.facebook.com/groups/gpalliance/ so that we can talk about how to unite and have our voices heard. We should be working together, not against each other. Most GP groups have the same goals and we'd love to have discussions with you on how to proceed on things like this.






We really get so upset...there are no words, when we log into to our GP Community and realize that some of our members died overnight. It makes it hard to log in ... I'm scared to get on the computer. We really need to make our voices heard. Here is an excerpt of Melissa's blog;

"We encourage you to join in our Virtual Advocacy Day and fight on our behalf to pass HR 2311, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2015, which would expand research and promote awareness of functional/motility GI disorders such as gastroparesis.

This bill is designed to help promote education of physicians and the general public, increase efforts to find new and effective treatments, expand clinical research, and create new medical centers designed to study these disorders and share information with others.

I urge you to read the text of the bill and contact your representatives. Ask them to sign on as cosponsors and support this bill! I cannot overestimate the importance of this bill.

You can find additional information and read the text of the bill at either https://www.congress.gov/bill/114th-congress/house-bill/2311 or https://www.govtrack.us/congress/bills/114/hr2311.

You can electronically sign and send a letter urging your congressional representatives to support HR 2311 at https://buildquorum.com/actions/1996".


For those of you who are suffering from grief because you've lost someone who meant a lot to you, I have an article for you to read that may make you feel a bit better: http://www.emilysstomach.com/2016/04/losing-loved-one-to-chronic-illness.html.

I hope that you'll join our cause. We really need you. The more voices we have, maybe someone will listen and help us. No one should starve to death.




Friday, May 27, 2016

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

FDA Approves Gastroparesis Test for Any Clinical Setting
Nortriptyline Minimal Benefit in Gastroparesis
Ghrelin Receptor Agonist Improves Diabetic Gastroparesis
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.

Thursday, April 14, 2016

Losing A Loved One To a Chronic Illness

We have all been there. We see a post or get a call, and the floor drops out from under us. We don't know what to do or what to say because we have just been told that one of our loved ones has passed away, without rhyme or reason, due to complications from a chronic illness. How do you handle that? It seems like it goes beyond the regular grieving process because you watched this person suffer and wrestle with a chronic illness for a long time before they passed. You get angry because people make off hand comments that they knew this person was going to die because they were so ill, yet the last time you talked to your love one, they were fine. So, how do you deal with the news, knowing that you will never get to have another conversation? Knowing what you do about their illness?

With Gastroparesis, it can be a lot more sneaky. I mean, most people seem fine on the outside but are suffering immensely behind the scenes. If you want to know more about how people with Gastroparesis live and what they suffer from, I have great resources in my blog. But this article, this is to honor those fallen GP Warriors, those who have given their lives to fight for a cure for Gastroparesis. We will never forget them and we will keep them alive in our hearts and our memories, and keep them alive in our fight. So, again, how do you deal with the loss? Based on my personal experiences, I'm going to share some things that really help me when I lose a loved one, especially really good friends, to an invisible illness.

I have another article with the stages of grief in it, entitled, "The Grieving Process for a Chronic Illness, and How to Overcome It" that you can find by clicking here: http://www.emilysstomach.com/2014/02/the-grieving-process-for-chronic.html. This will tell you about the stages of grief. I recommend reading it so that you can prepare yourself and to know how grief effects people.

The only logical answer I can give you is that there is no way to get over a loss. You can move past it, but you never truly get over losing a loved one, especially to a chronic illness.

Lean on support groups, with other people who have gone what you are going through, to help you through this difficult time. I recommend that highly, because people are social animals, and it helps to have empathy and people on your side with what you're going through. I started a Facebook Group, Grief Group for GPers, for those who have lost loved ones to Gastroparesis and who want to talk about it. We ask that everything posted in the group, stays in the group, due to family privacy matters. We also have an album of loved ones who have passed that we keep updated, so that we never forget why we are fighting and who we are fighting for, when we fight for things like awareness, research, and a cure for Gastroparesis. The group can be found here: http://www.facebook.com/groups/gpgriefgroup/.

Joining a support group can definitely help, but I also recommend writing. Writing helps me a lot. When I'm able to get out all of my feelings onto a laptop or a piece of paper, I feel purged and a lot better. You can tear up the paper afterwards or delete a word document, if you don't want anyone else to stumble across it but it helps to get your feelings out. I write this blog to help me deal with even having an invisible illness and most days, it helps me keep my sanity. You don't have to start a blog, but keeping a notebook will help. Like I said, you don't have to keep your feelings once you've written them down. You can throw them away, tear them up, do whatever you like to the page(s) that you write. I like to keep mine to reflect back on how I was feeling and how far I've come since that point. I have a journal that I write in and carry around with me, in addition to this blog.

Lean on your friends. I know this seems like a no-brainer, but your friends are there to support you and help you. Invite them over to your house (I don't know about you, but it's hard for me to go out since I suffer from nausea and vomiting a lot due to GP, gastroparesis, but everyone's GP is different) and put on a movie that you all love, play a game, board or video, and talk. It helps having a distraction and your friends will be there for you. You can tell them about your loved one, relive memories, and honor them in your own way. It helps, at times like these, to have friends you can depend on to make you feel better and the interaction will really help, especially if you've been keeping yourself in isolation.



And the last thing that I would recommend, especially if you can't go to the funeral, is to have your own ceremony. I know this sounds weird, but hear me out. You can do something simple and personal, between you and the loved one you lost. I take flowers, they can be hand picked or bought at a store, and I sit in the backyard. I place them at the edge of the yard, and I talk to my loved one that I've lost. I tell them how I feel, and you can do this in your head if you want to, especially if there are people outside. The important thing is to let out any pent up tears and feelings. Talk to the person you lost like they were there with you, next to you. Lay down the flowers and have your own moment. You don't need a funeral to let them know how you feel. I know I have a hard time going places because I vomit quite a lot, and I am always nauseated. Being in a car exacerbates that feeling, because I get motion sick, so I have my own ceremony, in my backyard. I know this sounds odd, but it really helps me. It helps me say goodbye and saying goodbye, in your own way, is very important. It's important that you let go. You can do whatever makes you feel comfortable, this is just my own little ritual I want to share with you to give you an idea of the things you can do. This is just very personal for me, and this is something I've never told anyone. A good friend of mine, whom I lost, once told me that she didn't want to die because of the suffering she would cause to the people left behind. I still think about that and she's been gone for twenty years.

We have lost five people so far, just this month, from complications due to Gastroparesis. It breaks my heart and saddens me...but it also gives me purpose. I want to continue fighting for those people whom we've lost, and I want to do it to keep them alive. One day, we will find a cure. But, for right now, I have high hopes for more awareness and research. I actually met a lady at the dentist who knew all about Gastroparesis, and I didn't have to explain it to her. She had read about it somewhere. It's going to happen. It may be slow, but awareness is taking shape, and hopefully, research and a cure aren't far behind it.

May our loved ones walk among the stars and be proud of us for carrying on and fighting for Gastroparesis.




Sunday, February 7, 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.