Born in the 1860's and married at 16, my great grandmother had a challenging rural life mothering a dozen children. Yet by all accounts, despite many hardships and heartbreaks, she laughed a great deal and lived contentedly into her 90's. What was her secret to happiness? She had a motto that she kept written down and neatly folded inside a mahogany desk drawer. How do I know about her writing down that motto? Teenage me found it many years after her death as I searched for a pen.
The folded note lay long forgotten inside the drawer of a desk she had left to one of her daughters. Upon her daughter’s death, the desk was passed on to me. It was the only item inside an otherwise empty desk drawer. The note having become stuck years earlier inside the drawer's metal track may have stayed hidden had I not noticed it years later. Once found, I was determined to read it, so I tugged on it hard several times before I managed to pull it loose, tearing it a little. I unfolded it with great curiosity and found that my great grandmother had written:
"Things always work out for the best for those who make the best of how things work out."
That's all it said. But really, that's all it needed to say. Her signature appeared underneath.
I’m no longer a teenager and have now lived enough decades to understand my great-grandmother 's wisdom. Her advice has stood me in very good stead, particularly with regard to my dysautonomia. Although my dysautonomia symptoms began eighteen years ago, it was only two years ago that they rather abruptly worsened and closed the door on my physical mobility.
Suddenly, I found myself unable to stand for more than five minutes at a time, which remains true to this day. I also found myself with time limits regarding how long I could sit up. This change in my health forced me to lie supine for chunks of hours each day. Boredom quickly set in. I viewed all those hours of having to lie down as nothing more than unwanted, frustrating interruptions in my day.
Then I remembered that motto: “Things always work out for the best for those who make the best of how things work out.” I set my mind to exploring how I could make the best of this immobility situation I now found myself in. I decided that one way to make the best of things might be to find something productive to do with my hands while I was lying down.
One idea that came to me was to paint. I had dabbled with painting on and off since childhood. Painting while lying down seemed like a logical idea for fending off the boredom inherent in being forced to lay down so much. It seemed like it might be worth a try. If it didn’t work out, I would come up with another idea.
So… my intention was to follow my great grandmother’s motto and try to make the best of how things had turned out. I was basically hoping that painting might serve as a solution to the problem of feeling frustrated, bored, and unproductive.
However, it didn't take long for the painting activities to quickly assume a life of their own. They immediately transformed my hours of frustration and boredom into hours of delightful fun. I no longer feel frustrated or bored at all when the time comes for me to lie down. To my surprise, there have been other unforeseen, positive, ripple effects that have come from painting again. I’ve formed new friendships with some other local artists (who are very accepting of my physical limitations). I have been pleasantly surprised at being approached by a few people interested in buying my art. None of this would have happened if not for my attempts to follow that motto.
I look back now and realize that before following my great grandmother's words, my energy was focused on the frustration of the situation instead of the betterment of it. I viewed having to lie down as an interruption of all-those-things-I-wanted-to-be-doing-instead, and that was that. Being constantly frustrated with the situation had put my mind in a negative place.
In sharp contrast, I now view the daily lying down episodes as “Okay, now it’s time to shift gears and paint for a while.” The hours swiftly fly and I am having fun while waiting for my body to reboot and allow me to sit/stand up again. I have my great grandmother’s motto to thank for this.
Remembering to “Make the best of how things turn out” is, for me, a very powerful perspective shifter. It has helped me tremendously in adapting to my new physical limitations. When it comes to adjusting to my dysautonomia symptoms, I now proactively challenge myself to seek out ways to respond to the question “How can I make the best of this?”
This shift in perspective has definitely helped me to maintain a happier life despite my physical limitations and life-altering circumstances. I feel lucky and grateful to have found her words when I did. Likewise, I hope you are able to find my great grandmother’s motto helpful as you work through your own unique dysautonomia challenges. Those of us with dysautonomia are each a little bit different but are also so much the same. You are not alone.
Editor's note: Missy's art can be seen on her website
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At age thirty-eight, Onva was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), after living with thirty years of undiagnosed symptoms. She remembers fainting as early as first grade, often when standing in the lunch line at school. Her mother took her to several doctors and she went through a myriad of tests. At one point she was mistakenly prescribed anti-seizure medication, and at another time her mother was told that she was just an anxious child.
For most of her life, Onva thought of her symptoms as “normal” because her mother, grandmother and several extended family members all suffered from fainting, presyncope, hypermobility and/or gastric complications. However, when her son began to develop similar symptoms, she decided that “This is going to stop with his generation, or at least I am going to find out why it's happening and make life easier for him.”
Her online research led her to believe that both she and her son had POTS, and that he needed a tilt table test to be officially diagnosed. Unfortunately, local doctors said he was too young to be tested for dysautonomia. Instead of giving up, she sought a diagnosis for herself with the belief that she could, at least, help him manage his symptoms if she better understood her own.
Onva’s diagnostic process is all too familiar to those of us with POTS. She incurred high medical bills, she was put on medications like antidepressants and steroids that exacerbated some of her symptoms. Physicians regularly dismissed her as anxious, as from her childhood. Her turning point came when she found a primary care provider who helped wean her off medications that were ill-suited for her and guided her in seeking a true diagnosis.
Once diagnosed, she learned to increase her fluid and salt intake once she was able to attribute her symptoms to POTS. She also understood her extreme heat intolerance, and the source of her life-long fainting, especially when she stood in long lines. Though her grandmother had passed, she was able to understand some of her symptoms too. She figured out why her grandmother had pre-syncope symptoms when standing in the church choir, and how she needed to wake up several hours early to give her body time to acclimate. Most importantly, an official diagnosis enabled her to find an autonomic specialist who was willing to treat both her and her son.
Though Onva’s physical abilities are limited by POTS, she feels that these shared experiences of illness have given her tremendous love and gratitude for her close friends and family. She has been able to support her family by working in a salon with an owner who understands she may need sick days, a cool environment and later work hours. Most importantly, her son’s symptoms gave her the strength to be a warrior for her family. In this way, she has helped both herself and her son get proper treatment, and she has brought the gift of “knowing” to all of her family members who have lived with undiagnosed symptoms. This experience has shown her that, together, her family can overcome anything.
Onva, as an individual with Dysautonomia, as well as a parent of a child with POTS has strong insight into this disorder. She encourages us to shed the shame we have about our bodies. If we need to sit, or lie down, to alleviate symptoms we should do so, regardless of where we may be. She also encourages parents to communicate openly and often with their children who have chronic illness. This communication, she says, provides children with the confidence to share all of their symptoms. Parents are, then, able to become the strongest possible advocates for their children. Finally, her lifelong experiences with POTS have helped her remember that while doctors are important partners, we know ourselves and our needs best.
“It will happen slowly, but it will happen.” I remember my neurologist, Dr. X, standing in front of me, her stethoscope around her neck and her hands in her pockets. She was quiet, relaxed and exuded confidence. Her composure gave me faith that it truly would happen. The Brain Fog would loosen its grip and my short-term-memory would improve.
My cardiologist referred me to Dr.X because I had a panic attack at a zoo after getting separated from my husband. I didn’t even think to call to reach for my phone. I sat down on the closest bench and willed myself not to cry. I guess sitting was enough of a rest to bring back some clarity because I remembered the phone in my pocket. But before I could even call, I looked up and there he was. He had come back for me. I was shaken to the core. This event became a part of my history and one of the factors in my dysautonomia diagnosis.
A few weeks earlier, Dr. X had ordered several head scans and a round of memory testing. The results were mixed. Physically there was nothing wrong that they could see in the MRIs but the memory testing showed I had some problems with recall and acuity. I knew I could not figure out how to put a tray of colored blocks into patterns fast enough. Sigh. She said, “ Too early, it’s too early for that for you”.
We talked about my life, what I had done, what I would like to continue doing and what was special to me. I needed to get my brain juices flowing again. I am not sure how she got me to think this was my idea but Dr.X is a master of beneficent persuasion. I told her I read every day, I love adult coloring and taking photos with my cellphone. I had set my fate; it was like that great line from Ghostbusters, “You have chosen the destroyer.” Well, I had chosen.
She liked me reading every day but suggested it should be non-fiction and subjects that are new to me. She liked adult coloring but only if I drew my own line drawings to fill in. Photography is a great hobby, but I needed to take photos in unfamiliar places. She also threw in making things by hand. I liked the thought of all of this and I accepted it. I think that accepting was the most important part. She recommended (with twists), what I already loved to do. Since I will be doing this forever, it is important to love your therapy.
I love gardening and horticulture and fully embraced university extension factsheets - short and sweet, info-laden pages about plants, animals, or foods related to our lives and environment. I average about a half-dozen a week. It’s amazing how fast you can tear through a few pages about the flowers, herbs, or pollinators you love. There are a zillion topics to choose from and all non-fiction. My other joy has been cooking new recipes from old cookbooks. Again, reading.
My thrift-store cookbook addiction has finally paid off. Right now I’m learning how to cook for my freezer which equals a fast and healthy dinner instead of take-out when I want to crash instead of cooking. Last week I froze polenta wedges and bags of cooked chicken strips I made on the electric grill. The week before I did some sweet potato puree and bags of chopped onions. I’ve got bags of frozen rice and cooked noodles tucked away. I make at least a dozen servings of each recipe so it’s worth the “spoons” I use for prep time. We’ve cut down greatly on takeout so overall this is a big plus. We eat a lot healthier and we keep our take-out money in our wallet. Please tip the cook.
Another big gain came from reading DINET’s Facebook feed. Not every article is about dysautonomia and I enjoy reading the personal perspectives. More than anything else, I’ve gotten an education in how dysautonomia affects our lives. I can now dialogue with my doctors and better explain to family or strangers what we experience.
Taking photos is easy - getting someplace new is not. My cardiologist already prescribed a daily walk -either outside or at the mall. I limit driving - no joy rides - just to the doctor or the supermarket across the street. I don’t go far. I park on top of the mall’s highest lot and took panorama shots of the skyline in the distance. I go downstairs and inside and take sienna tints of shoppers rushing by my bench. I go into to the dressing room and do a personal photo shoot of myself in fashions I would never buy. Well, not all the pieces! I take different photos of different things in different places. Mission accomplished. Each day I walk my two dogs separately (four walks a day!). I used to keep the phone in my pocket, but now it stays in my hand. I take pictures of what thrills me that moment - bark, molds, flowers, critters, clouds in the sky shaped like ducks. I usually delete more than I save - but the ones I save are keepers.
Neurotherapy can do more than give you clarity; it improves your life. You are better able to interact with people and the world again. I’ve heard knowledge is power, but in this case, knowledge equals confidence. I don’t know what I look like to strangers when I’m grasping for words. It bothers me deeply that people see me impaired. Do they think I’m drunk or witless? Am I allowed out by myself? But now, I no longer find myself searching so often for words in a conversation. I am not hesitant to speak because I can find many words in my head, not just the one I lost in thought. Being able to have a conversation go to its end is something so many take for granted. I did, too. Learning about my condition has given me a greater vocabulary. I have a larger arsenal of words and phrases to bring to mind when I am suddenly at a loss for a specific word.
In the last few months, I feel like the fog is clearing. I can recall discussions much better—I’m no longer asking my Hubs what he wants for dinner six times in a row. I think the last few months have been some of my most productive since my symptoms showed up three years ago. I’ve made advances in clarity and cognition. I can articulate better and I have more energy for “spoons” saved. We eat better and the dogs love it when I pick up that camera. And Hubs is sure happy--who doesn’t love a dinner like grandma used to make?!
Editor's note: AdultColoringBook_TrudiDavidoff.pdf Download and enjoy!
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Multiple System Atrophy (MSA)
A degenerative disease of the central nervous system, MSA usually becomes apparent when one is in their fifties or sixties. Genitourinary dysfunction, impotence, headache, neck pain, dimming of vision, frequent yawning, orthostatic hypotension, gait disorder, sleep disorders and hoarseness may occur with multiple system atrophy (Polinsky, 1996). Loss of sweating, rectal incontinence, iris atrophy, external ocular palsies (paralysis of eye muscles), rigidity, tremor, fasciculations and wasting of distal muscles may also occur (Rehman, 2001).
Loss of balance, difficulty moving, loss of fine motor skills, muscle aches and pains, changes (decline) in facial expressions, difficulty chewing or swallowing and a mild decline in intellectual function are among other symptoms patients may experience. (MEDLINEPlus, 2003, Multiple System Atrophy).
MSA is a fatal illness, and patients usually die within ten years of onset.
1. MEDLINEPlus Heath Information. (2003). Multiple System Atrophy. Retrieved September 8, 2003 from: http://www.nlm.nih.gov/medlineplus/ency/article/000757.htm
2. Polinsky, R. J. (1996). Multiple system atrophy and Shy-Drager syndrome. In Robertson, P. A. Low & R. J. Polinsky (Eds.), Primer on the autonomic nervous system (p. 222). San Diego, CA: Academic Press.
3. Rehman H. U. (2001). Multiple system atrophy. Postgraduate Medical Journal. 77, (908), 379-382.
DINET is excited to announce partnerships with three companies - Banana Bag Solutions, The Mighty and Outcome Health. All three companies are dedicated to education and patient support for people living with dysautonomia and chronic illness.
Banana Bag Oral Solutions produces a solution that delivers essential electrolytes and vitamins in a convenient powder blend that is dissolved in water. Banana Bag recently was a part of a two day conference at Choc Hospital in California called Connecting the Dots between: EDS, POTS, Chronic Pain and Mast Cell Activation Disorder. This is just one of the ways Banana Bag is working to make an impact on the Dysautonomia community. Words from Brian Derry, the owner of Banana Bag Solutions:
The Mighty is an online community for people living with chronic illness. But rather than focus on the medical aspects of disability and illness, The Mighty strives to fend off the isolation that comes with illness by forming a safe community for people to share their stories. From their site: “real stories by real people facing real challenges” The Mighty has created a safe platform for people living with chronic illness and disability to connect, share their stories and to raise support for the causes they believe in.
DINET is just one of over 200 nonprofit allies that The Mighty has partnered with to help deliver their excellent resources to the communities they serve. From the words of Mike Porath, Founder of The Mighty about their overall goals:
In the coming months, DINET will be working hand in hand with all of their sponsors to extend awareness and education throughout the medical community and to help bring POTS & dysautonomia patients the resources & support needed to live life with chronic illness.
To learn more about our sponsors -
Banana Bag Oral Solutions - Exclusive coupon for DINET members - save on an electrolyte mix. Go to www.bananabagdrink.com and enter the Promo Code DINET25 for a special savings of 25% off. Throughout October, BananaBag will donate all profits from sales using this code to DINET in honor of Dysautonomia Awareness and DINET's work.
The Mighty - Visit The Mighty’s home page at https://themighty.com For stories about dysautonomia - https://themighty.com/?s=dysautonomia For stories about POTS - https://themighty.com/?s=POTS
Banana Bag Oral Solutions photos from the Choc Hospital, CA "Connecting the dots between: EDS, POTS, Chronic Pain and Mast Cell Activation Disorder"
DINET's Digital Wallboard (video) Screen on left and patient tablet on right:
Social Security Administration's Adult listing of Impairments: https://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm
Social Security Administration's Childhood Listing of Impairments: https://www.ssa.gov/disability/professionals/bluebook/ChildhoodListings.htm
Apply for Social Security Online (Adult): https://www.ssa.gov/disabilityssi/
Apply for Social Security Online (child):
Disability Secrets: http://www.disabilitysecrets.com/
Florida Woman Claims she was Unfairly Denied Unum Payments: http://www.chattanoogan.com/articles/article_29001.asp
National Organization on Disability: http://www.nod.org
Online Lawyer Source http://www.onlinelawyersource.com/social-security-disability/index.html
Job Accommodation Network: http://janweb.icdi.wvu.edu/
U.S. Department of Labor Office of Disability Employment Policy: http://www.dol.gov/odep/
Giving a Chance Foundation (for members with Chiari I Malformation, Syringomyelia, Basilar Invagination, Tethered Cord, Ehlers Danlos, Hereditary Disorders of the Connective Tissue, Pseudotumor Cerebri, etc.) http://www.givingachance.org/
Find prescription drug programs for which you may qualify: https://www.pparx.org/Intro.php
Air Care Alliance: www.aircareall.org
Angel Flight: www.angelflightamerica.org
The National Patient Air Transport Helpline: http://www.patienttravel.org/
*This page is a work in progress. New links will continually be added. If you would like to volunteer to find links to add to this page, please let us know .
Information sheets to help you prepare for your trip to the ER or to a new medical practice.
The pdfs of these sheets can be downloaded here Patient Guide - medical trips.pdf for easy printing.
Medications - current
Name dosage prescribed by to treat what symptom
NOTES: allergies and notes about reactions to meds should be detailed here.
Illnesses: (be sure to include when you had the illness, treatment for the illness and whether you completely recovered or are still being treated for this illness)
Surgeries: (date, what the surgery treated, was it successful or not? If not, what lasting complications, if any)
Specific test ranges or numbers - standard to you. HR range:
Doctor or medical professional most familiar with your illness
This crossword was developed by DINET volunteer and Board of Directors member, Trudi Davidoff based on the information and articles posted on DINET's Facebook page during the month of December. Click the link to the pdf below the image for full size. You can also print the puzzle from the link as well.
*hint - if you get stuck that's where you'll find the answers The answers are also available in the Word Bank at the bottom of the page. Enjoy while you learn.
If you are reading this, then you likely suffer with a chronic illness. Recently, I published an article on the treatment of patients who have 'difficult to diagnose' illnesses. I can only speak to my experience with Dysautonomia, Ehlers-Danlos Syndrome and Chiari Malformation; however, this article is applicable to many illnesses that are complicated and messy.
Sadly, we can be treated poorly as we search for diagnosis and treatment. We are complicated, messy, mysterious and definitely not a quick fix. Does that mean we should get treated any less well than the easier patients? I would hope not. My previous article mentioned contacting a patient advocate and it received a great response and prompted many questions. So, here is my follow-up. Hope it helps answer your questions.
First, I hope you never need this information. But if you do need an advocate, then perhaps you have had a negative experience with a medical professional/system. The more doctors you need to see, the more likely it is to happen. Secondly, you are not alone in this. There are many of us that have had to reach down deep and stand up for our healthcare. Living with Dysautonomia, with an average diagnosis rate of 5 years and 11 months, has given us plenty of chances to do so.
There are two types of patient advocates. One is a professional patient advocate who typically works for a hospital system or physician's office, and the other can be one of your choosing - such as a family member, friend or someone you trust to speak on your behalf. We will be looking at both roles.
When choosing someone close to you to assist you with medical issues, you may want to consider the following:
Are they trustworthy?
Are they well-spoken and assertive?
Are they willing and able to fulfill the role you need them to?
Are they able to decide quickly how they will help you in the event you cannot speak for yourself?
For instance, as much as I love my husband, I would not choose him as my advocate. I believe he is too close to me to make well-informed and unemotional decisions. As I am writing this, I am thinking of who I would choose. For me, I might pick someone who shared some of the same conditions, and who I know is already knowledgeable about them.
When deciding how you would want your personal advocate to assist you, it is a good idea to write it down and keep the document in a safe place. Make them aware of what hospitals you would choose, if you had a choice, what medications you are taking, past surgeries and whether you want them to accompany you to medical appointments. These are just a few examples. Your situation and needs will be very individual. However, taking your advocate to new medical appointments can be a good idea. It provides you with someone who can assist you in deciding if the physician is a good fit. Having someone with me for appointments has helped my poor memory on more than one occasion. Plus, if the appointment or hospital visit goes in an unsavory direction, you have a witness, and it is not just your word alone.
Now, on to professional patient advocates. They can also be called patient liaisons, representatives, case worker or any rendition of these. Usually though, if you ask for a patient advocate, you will be understood. The following quote is from study.com in an article titled “What is a patient advocate,” detailing the role for students who may want to enter this field of work.
This next point is crucial. If you feel you have been given substandard care, contact someone! Calling the main hospital line or speaking with an office manager is a good place to start. Document everything, including the time and date, whom you spoke to and what was said. However, have reasonable expectations about the outcome. This is an extremely important reminder when advocating for yourself. Even if a doctor has treated you unfairly or given care that was less than stellar, do not expect him/her to be fired or reprimanded. You may not even find out the outcome. Some hospital systems have what they call “quality control panels” or “risk management committees” and when the complaint goes to those departments, they are not always required to disclose the outcome. They are only required to disclose that it has been reported and sent. Regardless, you stood up for yourself and your care, and that is an important point to remember! You also have the right to request amendments to your medical record. For many of us with Dysautonomia, we get diagnosed with all sorts of crazy things. There are also times that these misdiagnoses can impede our current care. If you have the medical information to back up amending your records, you can speak with your patient advocate about doing so. I am in the process of doing that myself.
What do you do if you feel your patient rights have been violated? This is beyond a rude and uncaring doctor. This may include discrimination, HIPPA violations or having your medical records withheld from you. We have all been offered the patient rights and responsibilities documentation when receiving medical care. I could wallpaper my house if I kept a copy every time it was handed to me. If you are confused or unsure as to what your rights are as a patient, take the time to read the HIPPA document. Being informed is a pillar of managing your own healthcare. If you feel your rights have been violated, you can submit a complaint to any State Medical Board. The American Medical Association has a list with the contact information for each State Medical Board. You also have the option of turning the complaint in to the Department of Health for your state.
When you are writing out a complaint against a doctor or medical establishment, be brief and selective. It is important to clearly state what the issue is without being emotional. Coloring your words with emotion is completely understandable as this IS your life we are talking about! But it will not serve you well.
Consider having your personal patient advocate assist you in writing and/or editing your complaint. State who or what you are complaining about and then the purpose of the letter. Briefly explain the issue that transpired and what you would like to see happen to resolve the problem. In the past, I have requested continuing education for one of my conditions. Finish by thanking them for their time, and sign, seal and deliver. A friend and an administrator in one of my support groups shared that she first gave the doctor’s office a copy of the complaint, in hopes of resolving it before turning it into the Board. This is most certainly an option, if you are comfortable with this tactic. If you chose to do this, taking your personal advocate with you might be a good idea. Also, keep triplicates of all letters and complaints submitted. Even if nothing comes of your complaint, it is documented and will hopefully help another patient with a similar complaint. If you have trouble discerning whether you should contact patient advocacy or the medical board, run it by a few well-versed fellow spoonies. Many of us have been in your shoes and know our way around the medical system.
I hope you will never need this information; however, given the nature of chronic illness, you may. I urge you to stand up for your healthcare in a productive manner and choose the best path for your situation.
*Utterback, S. (2017). What is a patient advocate? Retrieved from:
Editor's note: The subject of patient advocates was raised in Reanna's article "The Scary Trend I See in our Healthcare System" published in our partner publication, The Mighty.
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2017 was a year full of changes for DINET, changes that have had a positive impact on our members and the organization. The year began with the launch of the new website, which almost overnight doubled our reach nationally and internationally. Our forums saw a meteoric rise in new topics and continued discussions - a trend that continues to this day. We entered into partnerships with organizations that provide very different, but equally important support for dysautonomia patients, caregivers and physicians. And we have seen a significant increase in crossover discussions between our Facebook followers and our site members.
The outreach and growth has not only been within the patient community. Through our partnership with Outcome Health, DINET now has digital information screens in thousands of neurology, cardiology and primary care offices, with more being added all the time.
Here are some other important initiatives:
-- DINET produced a patient survey focused on gaining a better insight into the age of onset of symptoms and the diagnostic experience of our members. The final results are still being assembled for publication on our site.
-- For October Awareness, DINET produced Information Guides for patients to use to help explain autonomic dysfunction in simple, non-medicalized terms. October also produced many discussions and Facebook posts about the time it takes from symptom onset to diagnosis. And along with the fantastic work from our partners, DINET reached thousands of new patients & physicians with information, resources and messages of hope and support.
-- Survey Sundays. A new Facebook feature that asks a new question every Sunday about a different aspect of living with dysautonomia.
-- Featured Member Projects launched its first set of members in November. Every few weeks we share the talents and interests of a DINET member (or two). The project can be anything that a member does to keep themselves active, entertained, and happy. We’ve seen photos of member’s pets, beautiful artwork, music, movies, poetry, children’s books, gardens...the list goes on. We’ve received so many requests to participate from members that we had to hit the pause button on new applications. But keep checking back, we will be accepting new applications in January.
Our Partner Banana Bag Solutions are offering DINET members a special discount on their already discounted subscription prices. A 10% discount on any subscription to their products for the life of the subscription. This is a 10% savings on the already discounted subscription price. Go to https://www.bananabagdrink.com/products/the-banana-bag-oral-solution & use promo code DYS10 to receive the additional 10% off at checkout. What an incredibly generous way to support our membership and the work we do. Great thanks to Banana Bag!
DINET is so very lucky to have an amazing group of volunteers willing to share their talents to help other patients and caregivers and to raise awareness about autonomic dysfunction in all its forms. Without our volunteers, DINET would not exist. We are a 100% volunteer based organization and we are all patients and caregivers as well.
Volunteering is a rewarding experience too. It is a fact that giving is good for your health and it doesn’t take much to reap the rewards. It is a tremendously restorative experience to put your own feelings of discomfort aside for a moment or two, and instead, to focus your energy on helping another person, If you have found help, support or community through DINET, please consider giving back to the organization by helping out.
Here are a few volunteer opportunities needed now…..
Forum Reader The role of a Forum Reader is a very important part of keeping the forum community safe & accessible for all members. The Forum Reader needs to have a solid understanding and familiarity with the Forum Guidelines. The Reader reads new posts and reports any guideline conflicts to the Forum Admin or Moderators. The work can be done anywhere and at any time of day, but it is required that the Reader be able to login every other day to read new posts. The forum operates as a team so all members need to be comfortable working with other people in an online environment.
Forum Moderator in Training A Forum Moderator is a critical role in the forum community and requires training. To be considered for this role, a volunteer needs to be an active forum member in excellent standing for a minimum of 6 months. A Moderator in Training begins as a Forum Reader to acclimate to the reporting structure and the types of conflicts most commonly seen. The Moderator’s position requires logging in to read and edit (if needed) 3 - 4 times per week. The Moderators and Administrator work closely together to make decisions about content and guidelines, so it is important to be able to work within a group effectively.
The Forum positions are some of the most rewarding volunteer opportunities available with DINET. To learn more about volunteering on the Forum, or to begin the application process, please email the Forum Administrator at email@example.com
Social Media Assistant DINET is ramping up our social media activity but we need help to do it. Our Facebook page interactions have quadrupled in the past 6 months and are growing more each week. Our Social Media Coordinator needs someone who would really enjoy posting, linking and chatting online with patients living with dysautonomia. To volunteer in this position, you need to be very familiar with Facebook and at least one other - Twitter, Instagram, Youtube, SnapChat. The position would require a commitment to post at least 2 days per week. To learn more or to apply, please email firstname.lastname@example.org
Website Proofreader If you have an eye for details, can take good notes, know how to check web links and generally have a good command of the english language, this is a perfect volunteer opportunity for you. This position only requires 2 - 4 hours per month and it can be done at any time convenient for you. There may be times when your help is requested for a specific project or task, but this would be arranged in advance. The work requires going through content and taking notes for any typos, misspelled words, grammatical/punctuation errors, checking links to be sure they go to the appropriate page and taking notes about any errors found. This is a great way to volunteer especially if you are not sure how much time you can devote or if you have been away from work for a while and are not sure how much you can take on. If you are interested in this position, please email email@example.com
Thanks to all for a wonderful 2017! Best of health for all in 2018...
Return to Newsletter Table of Contents - December 2017