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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.


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.


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.


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:


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.


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.


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.


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.


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.


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.


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.


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.

Monday, February 1, 2016

Gastric Stimulator Research & Personal Experiences From Patients

A lot of people have had a lot of questions about the gastric stimulator. What is surgery like? What is the prep before the surgery? How long does it take to heal? What will it be like after surgery? Will I be able to eat?

I haven't had the surgery done myself, although I do have a spinal cord stimulator, so I asked several people for their stories of having the gastric stimulator placed. I wanted to share these stories with you in case you were thinking of getting the gastric stimulator and had questions about it. There is also a Facebook group, composed of members who have had this surgery done and can answer any questions you might have. It's important to ask questions and do your own research before having a major surgery like this one. Additionally, remember that everyone's GP (Gastroparesis) is different. The link to the group can be found here: LIFE WITH A GASTRIC STIMULATOR.

UPDATE: I wanted to add this video into the article because it is an interview with Dr. Tom Abell, who revolutionized this technology:

The first story comes from Donna:

The second story comes from a patient who wanted to remain anonymous:

This is what it looked like after the doctors placed the gastric stimulator:

BY: Christina T

I know there are so many decisions to be made when you are faced with a chronic illness. You may often question certain decisions whether it be tweaking your medication regimen, deciding to enroll in a new clinical trial, or the basic question which seems so hard to answer: how do I control my symptoms? It seems easy for those around you to just simply say “All you have to do is take a pill a couple times a day” or “ Haven’t they figured out how to fix you yet?” But as we know chronic illnesses are not that simple to treat, that’s why they are called “chronic”.

One of the decisions you may be faced with is “Should I get a gastric pacemaker?” or “Is this the right treatment for me?” Most of us will begin meeting with our doctors and our care team to come up with a plan that discusses the pros/cons of the procedure, the actual surgery, and the recovery period including the dos and don’ts after surgery, any follow-up appointments, and how you will need to take care of yourself afterwards. All of this can seem very overwhelming but it’s important to remember to make the best decision for YOU! Our team can flood us with information but you have to be your own voice and be comfortable with the decision you are making.

Once my treatment plan wasn’t working, I faced the question “Do I get a gastric pacemaker or not?” After deciding to consider the pacemaker, my GI referred me to a surgeon who would implant the Enterra device. I went in to the appointment ready to hear what he had to say, but had a nervous feeling in my stomach. On the first visit he went over my symptoms, how long I had felt this way, what had I tried, etc. It was a very thorough exam in terms of him asking me questions and going over my long, detailed medical history. He asked me how often I got nauseous, how I was controlling it, and if I felt the treatment was successful in dealing with my symptoms. I answered him and told him that I was NOT nauseous but did throw up after most meals. He continued on with the appointment and gave me my packet of information on all of my pre-op appointments for the next week and my surgery was scheduled for 2 weeks from then.

I then left and had a follow-up scheduled for the next week. First, I was supposed to have a meeting with him, and then go over to the hospital to have my blood work, EKG, and other routine tests performed to give me the green light for my procedure. I showed up for my appointment and he again reviewed my symptoms and a “light bulb” moment went off in his head. He finally registered that I did NOT have nausea. Additionally, he realized I was a patient who needed to have MRI’s on a yearly basis for other medical issues. He then began getting upset with me and calling my GI and getting very angry for why she sent a patient who was not a good candidate for the procedure. I felt so uncomfortable as a patient because I was sitting in his exam, room and he was right next door calling my GI during a procedure, made her step out of the OR because he was so infuriated that I had wasted his time and how could she send me to him when I was not a candidate. I remember sitting there and feeling so embarrassed for him. He was so angry that I don’t know if he realized the whole office could hear him basically chewing out my GI. He then came back into the room and it was decided we would cancel the procedure. After we made this decision, he was still pretty heated and made me feel very badly that he had to call everybody and cancel everything. After all, it was more or less the 11th hour but I didn’t care. He kept saying things like, “Now I have to find someone to take your place because we already have the device here, I have to call the hospital now and take you off the schedule and get a hold of so and so, etc.” But, I knew in my heart no matter what he said, I had to do what was right for me! That gut feeling I had felt all along was becoming harder and harder to ignore. I felt the writing was truly on the wall at this point.

So, in conclusion, the lessons I’ve learned that I hope you will gain wisdom from is this:

1) Listen to your gut- if something doesn’t feel right to you whether it be in your healthcare or your job or some other aspect of your life, trust your intuition. Don’t hope that in time you’ll become comfortable with the situation or decision.
2) Do your research- I always find it helpful to talk to others who have gone through the same thing. Ask friends, family members, and coworkers about their experiences, who they have used, and if they would recommend him/her. Talk with your doctors and ask for referrals from them. Seek second and third opinions, don’t just settle- -your health and life depend on it!
3) Always go in with an open mind- Go into every situation with an open mind and then make your judgments after. Whether it is an important appointment like mine, a job interview, or something else, never let your judgment be clouded by preconceived ideas or thoughts. Doors are always opening and closing throughout our journey, be open to what life has in store for you.
4) Allow for reflection time- Very rarely in life, unless it’s an emergency, do you have to make a decision right then and there. Being able to walk away from important decisions and come back to them after having time to think things through often allows people to make better decisions.
5) Know and understand exactly what’s involved in your recovery- Make sure you understand your restrictions such as diet, activity limits (i.e., heavy lifting, when you can resume working, etc.) and how to properly care for yourself after to ensure you have the best chance possible for a smooth and successful surgery.

This is a picture of the gastric stimulator, taken from:

This story is Stephie O.'s personal experience:

My story is a long one of constant misdiagnosis and long time searching for a doctor who could help once I found out what I had and suffered for over 15 years. So on that note my doctor who given me the surgery would only except me is my percent was low enough on the gastric empty scan 15% or less and had the symptoms needed to fit into what he felt were acceptable to risk the surgery. I threw up many times a day sometime so many I would end up in the hospital. The pain i had sometimes was not bearable I was a complete mess. So I was a go ahead for the surgery. The doctor had me take a xray to look for good placement then did surgery soon after. I had mine on my left side a few inches from my ribs. There is about a 2 inch scar.

When I woke the pain was worse than expected and the breathing! Every time I took a breath it got to a horrible pain scale! But as the days went on that pain was completely gone. I stayed in the hospital 4 days but he said the average is 3 day's[sic].

On the pain relief scale and nausea scale things were better almost instantly. I was not 100% but things were livable. When I seen the doctor less than a week after discharge he was able to turn up and change the frequencies. When he did that I was aware of a small pinch right where my pacemaker was which as quickly as it came ...gone. I was about 99% better only here and there had I had very small episodes of pain. The nausea came and went but the intensity with decreased on such a scale that my life is so much better with the device then without it. About a year and a half later I notice things were going downhill an extremely fast. I went to see the doctor and he turned up the device which helps for a very short time and the same thing would happen I would get extremely sick and in lots of pain he turned it up to the max that he could. things got so bad I weigh 98 pounds at 5'10" ghe doctor quickly put a feeding tube in my stomach and left the pacemaker in. We tried to make things better for months after that and nothing was working. If I continued at this rate they said I could die soon. So we got aggressive and took the feeding tube the gastric pacemaker out and removed about 3/4 of my stomach like a cancer patent would have done . I am about 60 sometimes 70 better now. It was all a long road. I can say the pacemaker make my life livable for a long time and I was amazed at how well it worked! Would not change a thing about that surgery ND would do it again!

This story is from Julie:

I got it on April 20th. Reason [sic] I made the decision to get it was because I couldn't handle the throwing up and nausea anymore. I first had to get approval through my insurance. Once they approved [it] I got the temporary which is for 5 days and had an endoscopy. It worked so I went ahead and talked to the surgeon to get the permanent one. Surgery was very painful. I have a high tolerance when it comes to pain meds but the gas pains where the worst. I still have pain where the pacemaker is located but its not as bad as it was before. I did stay over night in the hospital because they wanted to make sure anesthesia wouldn't make me sick and [also wanted to see if] I could tolerate food. I am still getting use to it and I already had my settings changed because I am still getting nauseous but was nausea free for the first 2 weeks. It has helped because I have had less nausea and vomiting. I would definitely recommend to anyone who throws up a lot and is very nauseated like I was. Being scared is a natural reaction to have when it comes to having surgery but just try to think positive. I was walking that next day. They wanna make sure you are able to use the bathroom (peeing). Doesn't help the GP pain at all. It is only for nausea and vomiting that's all. Yes I do notice a big difference between before and after the pacer. Less days of being nausea than before.

This is how the gastric stimulator is inserted, photo taken from:

This story is from Kathleen:

I've had my gastric pacer for 1&1/2 years. I was terribly sick and had exhausted all other avenues. Getting authorization from the insurance company was pure hell. I finally received news that I was authorized. I had lost 84lbs. I jumped at the chance for help. I didn't have to do a temporary. The surgery went well. I had a few complications so I ended up with a 4 day stay. I traveled 9 hours round trip every 3 months for adjustments. With each adjustment I felt better. For a whole year I got great relief. I put weight on and avoided hospital stays. Then I started throwing up again. I'm losing weight like crazy again. I had a GES study and CT Scan. They showed hyper digestion. I've had 6 ER visits the last month to get stabilized. I am now sick again almost daily. This by all means isn't a cure. I have an endoscopy with baristate on the 27th of this month. I don't know what my future holds but at this point I'm willing to try anything. I say if you're sick to at least give a pacer a try. 💚

This is Melissa's story:

I'm Melissa. I have a gastric pacemaker and wanted to give you an idea of how mine is going and etc. First of all, it took me a long time, over a year, to get to the place where a doctor agreed to give me a pacemaker. Because of my intestinal dysmotility [sic], both the Cleveland Clinic in Ohio and Piedmont in Atlanta didn't want to put it in. They thought it wouldn't help because they thought my intestinal dysmotility [sic] played too major of a part in my symptoms of nausea, vomiting, weight loss, malnutrition, dehydration, bloating, pain, and more. However, I wanted to try the pacemaker before any of their options. The CC wanted to do major surgery and was even talking transplants and Piedmont just wanted to give me a bunch of tubes which I believed wouldn't help all of my symptoms. So I opted to go with a doctor in Augusts at Georgia Regents Medical who wanted to try the pacemaker. His name is Dr. Rao.

Surprisingly once we put in the paperwork with the insurance company it was approved within a month or so. Once it was approved, surgery was set. Getting ready for surgery wasn't difficult, just the typical don't eat after midnight (which I couldn't eat anyways), and washing the surgical sight several times with special antiseptic soap. I did have to do an extra pre-op appt because I have tachycardia so they had to do an extra EKG and such to double check to make sure my heart was good.

The day of surgery was nerve racking to say the least. My sister, nephew, and best friend went with me. It was scheduled early so as to give me more time in the hospital to recover. They had already planned for me to stay overnight. My particular surgeon had all his pacemaker patients stay overnight. Not all surgeons do that. If you are given the choice, stay overnight. It was nice to have nurses help you get up and around. Not to mention, the pain meds in an IV are much easier to take then the pills they give you when you go home. Anyhow, once at the hospital it was the normal check in and probably within an hour of being there I was getting anesthesia. The surgery itself was about 3 hours.

I honestly don't know how long I was in the recovery room. Several friends drove down to Augusta to see me while in recovery and I don't remember it at all. Once moved up to a room I was more coherent and definitely started to feel the pain. It was done laparoscopically however where they put the pacemaker in had a large incision. Plus my entire abdomen was just sore. I was thankful though that I didn't throw up. I usually throw up after anesthesia but apparently they double dosed me with nausea stuff before I went in and put a patch behind my ear that stayed on during surgery and for a couple days after.

Anyhow, I learned quickly to let your nurse know you are in pain. There is no point in toughing it out when they can give you the good stuff in your IV. Because of the pain medicine and alternating giving me zofran and phenegran in my IV I actually slept ok, for someone who had just had surgery anyways. It was painful to get up and use the restroom and walk around but that's why staying overnight is also helpful. The nurses helped me, as well as my awesome sister who spent the night. I would recommend someone trustworthy spending the night with you.

I started to get really flushed and hot and when the nurse didn't come to check it out, my sister totally went out and got that nurse. The day after surgery they had me walk around some and then said I could go home. Because we were 3 hours away from home, we opted to stay in a hotel nearby for another day or two. That was a good call too because without the pain meds through the IV I was super sore. They gave me percocet to take, but I opted not to take it.

My stomach never did well with pain meds and I wasn't about to risk it right after abdominal surgery. So I crushed up tylenol and used that for my pain medication. Not as effective as the hospital pain meds by any means but enough for me to be able to grin and bear through it. The ride home was rough. Every little bump made me hurt.

I also had to put a pillow between me and the seat belt bc of where my pacemaker was placed. Different doctors place them a little differently but mine was placed right where the seat belt goes across. So rough 3 hour ride home. But once home, or rather at my sister's house to recover, I was able to relax a little bit. I won't lie. The first week after surgery is painful. I was really sore and moving around too much really smarted. Getting into a good sleeping position was hard.

The worst though was when I finally had to have a bowel movement. Pushing down was very painful but once it was over with I was so relieved. Anyhow the pain subsided some after the first week, and then continued to subside as the weeks went on. By my post-op appt a month after surgery my abdomen was only hurting when I stretched it the wrong way.

Now at my post-op I had my pacemaker adjusted up. I had been trying some soft foods like jello and noodles but wasn't always keeping them down so they adjusted my pacemaker up. After my adjustment, for a couple weeks I was able to have some more soft foods and stuff like crackers but only a few bites before I got extremely nauseous or even sick. So I was still having to supplement with Ensure Plus.

After another month of this I went to get it adjusted again. Unfortunately, I got really sick about that time of the adjustment with a UTI and sinus infection. This set me back big time. My gastroparesis flared and the antibiotics they gave me made it even worse. After trying to keep down 3 different rounds of antibiotics my stomach completely revolted and I couldn't keep anything down. I ended up in the hospital with a critically low BUN level and had to get fluids and a banana bag over the course of 3 days there. That was last weekend.

So now I am waiting to see the doctor in Augusta tomorrow to see what we can do to get everything on track. I will say this... the pacemaker seemed to help for a couple of weeks. However once my stomach started to flare, it became useless even after several adjustments. I know everyone has different stories but mine has been a struggle so far. I will say this too though. I have not completely given up on my pacemaker. My surgeon says that sometimes it takes people up to 6 months for their pacemaker to really 'kick in' and I am really hoping this is true for me. I am hoping that it was just the infections and the antibiotics that messed with my pacemaker's success. I will know more tomorrow when I go see my doctor in Augusta.

The gastric stimulator, photo taken from:

This is ReggieKay's Story:

In 2005 I had a neck surgery on C/5-6, two months after that is when my symptoms started and of course no one would admit that my vagus nerve was damaged, but I believed it was. I had nothing wrong with my digestive system before this.

I went through so much before even being diagnosed, even an ERCP and I got pancreatitis, from it, almost losing my life. They even tried Botox, reglan, domperidone, and finally, put me on tube feedings. I was down to 98 lbs, showing the tube feedings had became unsuccessful, then I was put on TPN and sent to a long term care facility, eventually at the end of 2008 sent home to die.

In 2009 a doctor in New Orleans, Dr James Smith, agreed to see me. I went from the first office visit with him to ICU for long time, and my only hope was a gastric stimulator. I was the worst case he had seen and at the time he had about 6-8 patients. He pushed for the stimulator, thinking it would be only thing to really save my life.

I was on TPN until 2012 and after many adjustments and many septic infections, the last one about did me in & the doctors said I would not survive another one, so we finally put the stimulator on the highest setting and I was able to get off TPN and have my picc line removed. I also, decided to remove myself from all stress & an emotionally abusive relationship. I got off all of my prescriptions, except Marinol, another life saving drug for me. I believe stress makes GP much worse.

The gastric stimulator batteries usually last 4-5 yrs, but mine went out earlier due to being on the highest setting. I am to replace it every 2 yrs. This year it went out, it was my fault because I was going through a divorce, went off grid and lost down to 119 pounds before having my batteries replace again. Since October of this year I have gained 10 lbs. I still have a G-tube for drainage and having it replaced at the end of this month.

Now, the surgery for gastric stimulator was not easy for me, now I think they can do it better. My doctor had not done many [of these surgeries] at the time... they cut me in two places up & down my stomach and on my right side. I woke up in a lot of a pain and my bladder was traumatized, so I had to be on a catheter for a few weeks.

Scary as this may seem I would do it all over again. I really believe it saved my life & opened a new world to me. I did not prepare for the surgery itself , just regular no food or drink after midnight, and recovery I would say was 4-6 weeks.

Normally, you go home in a couple of days. The hardest part was figuring out what the settings should be, because every one is different. That was the most frustrating part to me and the doctors. I was so dependant on TPN and everything was shut down for so long my body was in bad shape and I think that's why it was a slow process for me. I totally would think the sooner the better. I support the gastric stimulator and do believe it can save lives. I hope this helps! ~ ReggieKaye

This is Christine R.'s Story:

What made you decide to get the gastric pacemaker?

What was the process that you had to go through to get the pacer?

How long did it take you to get used to the pacer?

Did it help you?

Would you recommend it to others?

Do you have any advice for those who are scared of the surgery but are considering getting the surgery?

How soon were you walking around after the surgery?

Did it help the GP Pain any?

Do you notice a difference from before the pacer and after the pacer?

My story with Gastroparesis starts in 2010. One day I was fine and the next day I wasn't. I was close to turning 30 and my life completely changed. I woke up feeling sick and didn't know what was going on. I ended up throwing up for hours on end and being taken to urgent care. That was the beginning of GP for me--except they didn't know that. I also had symptoms of vertigo and a migraine, both of which I had never had before. Everything continued for MONTHS before they diagnosed me. I was wheelchair-bound, vitamin-B deficient, not driving, not working, and losing weight and hair by this time. Over the course of four and a half years I lost 115 pounds and tried several medications that didn't work. When I started looking pretty bad and my hair dying, that's when my GI doctor suggested the pacemaker and I started the process. Even though it's not been this BIG miracle, I don't regret it. We GPers have so few options offered to us, so why not take those given, you know?! I do have some secondary disease as a result of Gastroparesis. I now also have (mild) Postural Orthostatic Tachycardia Syndrome (POTS) and neuropathy in my legs, but I don't let any of my diseases slow me down!

This is Diane S.'s story:

I got mine Feb 2011. It took me 2 years of weight loss and being on liquids to get it. Even though I was down to an average intake between 400-700 calories daily, I wasn't a candidate for tubes because my weight had more or less stabilized and my labs had compensated. Surgery was no joke. I spent over 8 hours in the recovery room because they couldn't get my pain under control and the irritation from the surgery had kicked off severe vomiting that they couldn't get under control either. But, once they gave me a pain pump and got me up to my room, I was able to stop using the pump after about 5 hours. I was sent home about 36 hours after surgery, about 11 pm...the delay was due to the on call surgeon (not my usual one) writing for the wrong pain medication for me to take home. Only took those for about 3 days once I got home. Was out for 3 weeks, but was able to return to work at almost full duty. I only had to get help if holding a large patient, or holding a patient up for an extended period (I worked in an ICU). The stimulator helped right away with the nausea, but there was noticeable changes after the 3rd setting change at about 5 months. So far, the battery is holding its' own.

This is Micki F.'s Story:

They [the doctors] believe I had the symptoms of GP for a long time but didn't get diagnosed until 2010. That is when the decision was made that if I didn't quit work I would be dead before the end of the year. The down side of that is I was left with no insurance.

By the time I became eligible for insurance and went through multiple appeals to get the pacer approved in May of 2012, I had lost from 122 pounds down to 83 pounds. I really had gotten so tired of fighting at that point they were afraid I might not survive the surgery. Dr. Abel placed my pacer with the help of Dr. Lahr at UMMC in Jackson, MS.

The constant 24/7 nausea was all but gone when I woke up. It's not a cure all but it has been a life saver in that I am more functional. A nurse taught me that sometimes, not all the time, the difference is those who give up, those that have been let get too far into the illness, and those who want to strive to thrive. So I spent a week in the hospital being one that was almost too far into it, then I went home and we started the long recovery.

In this three year time I have gained from 83 to 109, I have gone from not able to eat anything to getting down about 1000 calories a day of soft foods. I have gone from taking phenergan (liquid works best for me) 4-6 times a day down to twice and the most. There are still problems the gastric stimulator can't fix. My bowels don't move at all by themselves so I am totally laxative dependent. I can't drive or work because of the sudden syncope episodes and sudden bowel explosions with no warning from the unpredictable laxatives.

I still have to get 2 multivitamin drips a week. But with the gastric stimulator I am alive. My nausea is limited to none if I am careful. I gain weight on a limited diet.I have been able to return to church 90% of the time. I am able to enjoy time with my grandchildren when they visit me at my home instead of a hospital room or ER as before. I have learned that my life will never be the same again, but thanks to the gastric stimulator I have a life to live. Day by day, but I have a life to live. I hope this helps anyone trying to decide. It's an extensive surgery; not for quitters. But as you heal and get adjustments the quality of life returns to quality.

This is Bridgett K.'s Story:

To fully recover was probably about two months. I had pain on my right side where they implanted every time I got bloated or when I stood up straight. Still get pain in that spot if I am stupid with what I eat. There wasn't much prep to the surgery. They called me two weeks before surgery to say I had been approved. They wanted to put it in one week from that date but my insurance wouldn't let them. So I met with the surgeon a week before add he explained to me the procedure. The night before I wasn't allowed to eat(not a problem) :). I was super excited because my picc had to be pulled about a month prior because I got sepsis from it getting infected so I wasn't getting much nutrition.

My husband has video of when I first woke up. They have you pretty doped up so I don't remember much except worrying about imaginary cupcakes. That night I had a liquid dinner and the great day they turned it on. No significant improvement from turning it on the first time. Maybe a little improvement in nausea. I believe the surgery took about two hours. So it was pretty quick. I was terrified. Partly because it was a surgery but mostly because if this didn't work then I would be tube fed for the rest of my life. Not that there is anything wrong with that. I have had a picc line twice and got sepsis twice and the idea of a tube directly into my intestines just scared the heck out of me. If that's how I would have to live I'm sure I'd adjust but I was really hoping the outset a would work. My gi isn't exactly a people person and he's a little weird but I'm glad I found him. He gave me a new lease on life. I got down to 94 pounds and at 5'3 I had lost 40 pounds and was emaciated. No one seemed to help except this guy. I was allowed to eat after surgery as soon as I could but I spent most of the day of surgery sleeping.

They monitor the gastric stimulator through a handheld device that tells them my settings and they can adjust the settings through that device. The newer machine that just came out will even tell your doctor when it's time to replace the machine. I would say for anyone who had exhausted all other options this is worth a try. They can take it out if it doesn't help. I don't even mind the two three inch scars. I have plenty of other surgery scars from fusions and other surgeries but I'm proud of these scars.

Gastric Stimulator with handheld device that the doctor holds, photo taken from:

Gastroparesis: Know the Risk Factors for This Mysterious Stomach Condition

This is an article that spoke to me as well that I found online. I wanted to save it in my blog so that I could refer back to it when I need to. I also like having things in the same place, research wise, because it makes finding things easier. Plus, it contains great information that might help others who may not have seen this article. I want to have information in the same place so that people can find it and read it but I am including the source, if you want to go back and read the original article. This article was taken from:

And it reads,

"Gastroparesis: Know the Risk Factors for This Mysterious Stomach Condition
Early diagnosis makes treatment easier
September 8, 2015 / By Digestive Health Team
Digestive stomach system - real view female anatomy concept

As diabetes cases skyrocket, another condition called gastroparesis is rapidly becoming a more common diagnosis. It reduces the ability of the stomach to empty its contents but does not involve a blockage. Nausea, vomiting, loss of appetite, bloating and chronic abdominal pain are the hallmark symptoms, according to gastroenterologist Michael Cline, DO.

If you have diabetes, gastroparesis can cause it to be poorly controlled. Severe gastroparesis makes it difficult to manage your blood sugar.

Primary care physicians — and even gastroenterologists — frequently overlook and under-diagnose the condition, he says. Sometimes it is initially misdiagnosed as an ulcer, heartburn or an allergic reaction.

In non-diabetic patients, the condition may relate to acid reflux.

'In current data, up to 40 percent of people with acid reflux have some sort of delay in gastric emptying,' he says. 'So that’s a fairly large number, when you look at the millions of Americans who have acid reflux,' Dr. Cline says.

Stomach motility either abnormal or absent

Gastroparesis, which means partial paralysis of the stomach, is a serious disease that prevents your stomach from digesting food and emptying properly. Damaged nerves and muscles don’t function with their normal strength and coordination. That slows the movement of contents through your digestive system.

Doctors don’t yet know how to reverse the damage, but there is a range of treatment options. And, early diagnosis helps, Dr. Cline says.

A look at what causes gastroparesis

The primary cause of gastroparesis is damage to or dysfunction of peripheral nerves and muscles.

In diabetic patients, Dr. Cline says, it appears as more of a neuropathy-based disease associated with damaged nerves. In patients who don’t have diabetes, it seems more muscular-based: The nerve endings are all right, but the muscles are not responding, he says.

In addition to diabetes, other sources of gastroparesis include:

Lingering post-viral effects — You get a virus, but the nausea and vomiting from the virus don’t go away after the virus is gone.'Some of those cases will resolve, and we just have to wait and watch,' Dr. Cline says. 'But a lot of times it doesn’t resolve, so we have to continue to treat the patients.'

Connective tissue diseases — Gastroparesis may plague patients who have diseases such as multiple sclerosis or muscular dystrophy.

Side effects from medication — Probably the most difficult group to treat, narcotic pain medicines and other drugs slow a patient’s intestinal motility, Dr. Cline says.'That can be very hard to treat, because the medications often override what we prescribe to treat the gastroparesis,' he says.

Post-surgical effects — Some patients develop gastroparesis after the vagus nerve is damaged or trapped during a gastrointestinal surgical procedure.

A difficult disease to treat

Treatment sometimes begins with adjustments to diet and medication. If those approaches don’t work, surgical treatments are the next steps:

Feeding tube — Because gastroparesis impairs proper nutrition, surgeons can insert a feeding tube through the patient’s nose that bypasses the stomach. Or a surgeon may place what is known as a J tube directly into the patient’s small bowel for feeding.If these don’t work, total patient nutrition (TPN) is the next step. The patient is fed through an IV.

Gastric pacemaker — A surgeon also may use a minimally invasive laparoscopic procedure to implant a gastric pacemaker to treat this chronic digestive condition.The small device employs gentle electrical impulses to stimulate the stomach’s muscles to perform their usual functions. These impulses help move the stomach’s contents through the digestive tract and bring the patient relief from symptoms.'We’re moving towards not really curing gastroparesis — because we really don’t know how to reverse the neuropathies yet — but fixing it as best we can,' says Dr. Cline. 'So patients and their families need to push for the diagnostic tests that we can do, because the earlier it’s diagnosed, the easier it is to treat.'

The gastric pacemaker after surgery. Photo used with permission from the patient, not in article.

Treating psychological concerns

A neuropsychiatric specialist is sometimes called in to address mental health concerns that can accompany this chronic disease.

'If you wake up sick every day and vomiting all the time, this disease can quickly move from a purely physical one to a psychiatric one, so we treat the possible components of depression, anxiety, pain and so on, too,' Dr. Cline says."

To the Loved Ones of a Person Living With Chronic Pain

This is from an article I found online that I wanted to save. It's from I wanted to put it in my blog so that I could come back later and refer to it and find it if I needed to. I like having things in one place so it's easier for me to find it. This is a great article and I wanted to save it in order to share it with others. The writer put down exactly how I felt and this article really spoke to me. I hope it will speak to you, too.

And it reads,

"I’m not sure if chronic pain is isolating in and of itself, but it’s often the lack of understanding that (at least for me) makes me feel alone sometimes. Sometimes the lack of empathy is more unbearable than the pain itself, like you’re living in a state that is so entirely foreign and inconceivable to most people — and that is what makes it alienating.

Good portions of my day are usually spent being guilt-tripped by friends that I haven’t seen them, haven’t FaceTimed them, never call, never text, etc. Before I always felt the need to apologize and explain myself, but most of the time now, I am so sick of constantly having to explain myself. People don’t realize the fear — the fear of being judged, the fear of not being understood, the fear of feeling vulnerable. That fear strengthened my relationships with close friends and loosened my ties with acquaintances.

In my worst pain, all I wanted was to be distracted. I wasn’t capable mentally and physically of contributing to conversations, and constantly explaining to friends and family what my pain is like, the current updates on my health and hearing the (mostly) senseless feedback was unbearable. (Keep in mind, for most of my grueling experience with pain, I had gained weight I am slowly losing, and compared to what I used to look like, I generally feel like I let myself go. My hair and make up is never done. I dress for comfort now mostly.) Sometimes I avoided people entirely because as nice as it is sometimes to be asked how you’re doing, it can also be a pain if you’re being asked 15 times in a row. I already do this with doctors almost every day.

Some people have taken it personally that I haven’t tried to “rekindle” relationships with them. The best response I have to this is that it is nothing personal. I am generally so overwhelmed by all the things I have to do and am so exhausted that old friends unfortunately get passed to the wayside so I can maintain the friendships for the friends who aren’t just “checking in” but calling me every day. To me, the people who loved me at my darkest are the ones I prioritize.

Here are several things I believe need to be known:

In general, I would rather hear about you. Your day, your funny experiences, etc. than talking about my health problems. I generally feel uncomfortable having to explain myself, and for some people, it’s just too damn sad, so at the risk of making it uncomfortable, let’s keep it about you. Or just send me funny things. I always appreciate it. No one understands how boring this gets sometimes. I generally try to “shield” people from how bad my pain really is.

If I cancel plans last minute, it’s never because I don’t feel like coming. I am in my house, doctor’s offices or volunteering for a good percent of my day, so if I can handle it, I always want to go out. Some people are good about this and some obviously aren’t. I’ve just decided I can’t feel bad about making decisions that may affect other people. I’m responsible for myself and need to take accountability for my actions. No one understands my body like I do, so I have to make judgment calls…whether it upsets other people or not.

I try to explain to people that my days sometimes feel like a sh*tty, charged iPhone. I have limits. There is only so much I can do every before my battery dies and everything takes some battery life. Especially those moments when you think you have 10 percent left and all of sudden you’re at 2 percent. Sometimes this becomes an anxious social situation. Situations where I am out with friends and I haven’t driven — I have no control. If I need to go home but can’t, I panic. I avoid these situations as much as possible.

Having a “good day” doesn’t mean I’m better; it just means I’m having a good day. And even if I’m smiling and looking like I’m having a great time, there’s a good chance I’m screaming internally. If I need to leave right at the end of a dinner or cut things off early, again, it has nothing to do with you.

When I say that I can’t be cured or that I’ll never be healthy, I’m not trying to be negative. My life is not CrossFit. I have boundaries and limitations. This is my reality and I’ve come to terms with it. I’ve accepted it. I hope others do, too.

Don’t be offended if I forget things you’ve told me. When my pain is bad, my memory can be extremely foggy and my short-term recall is really bad. Most people refer to it as “fibro fog,” and it’s a real thing. Google it.

I don’t want to be known as “the girl with pain.” I want to be normal and treated like everyone else. I still want to be invited to things. I hate to play the pain card and truly feel happiest when I’m in a “normal” setting.

Just because you see me posting online doesn’t mean I’m feeling better. Sometimes I am in a ton of pain but my choices boil down to sitting and crying or distracting myself.

I always try to be in a good, positive mood, but sometimes when you’re running on no sleep with lots of pain, it compromises your mood. Sometimes I just don’t want to do anything with anyone. Or talk to anyone. I need my alone time.

Small, thoughtful gestures mean the world to me. Actions always speak louder than words.

Dealing with chronic pain drains me every day. People who have known me forever have known me as an extrovert, but that is changing.

Even if I’m having a bad day or a lot of pain, your problems are still valid to me. Never think that because my problems seem more serious that I don’t want to listen to yours. I never purposefully try and make it a competition.

I still struggle with figuring out what I need from my friends and family sometimes. I hope people understand that I never intentionally try to discuss my health for pity, sympathy or attention. I wish people could understand that dealing with this is just a big part of my life, whether I want it to be or not. I try really hard to help people that are dealing with the same problems. I don’t want to be pitied, babied, fawned over or put on a pedestal. And certainly not be to looked down upon or judged.

It’s when people are uncomfortable with me that I become uncomfortable with myself. But I am comfortable with myself, and I own who I am.

Follow this journey on Slightly Distressed Damsel.

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