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edriscoll

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  1. DINET member name: Skydersaur Skyler's hometown: Dallas Fort Worth, TX Diagnosis: Inappropriate sinus tachycardia, autonomic dysfunction and most recently ME/CFS Blog: https://spoiledbrats.org In Skyler's words..... I started blogging about natural health and wellness a few months ago after I married a very technologically talented man. We have both relied on natural remedies to go along with our prescribed medications and decided we should be sharing our healing with others! While my husband does all of the behind-the-scenes work on my website, I write the content and take photog
  2. DINET member name: Dot Dash Hilde Dorothy's hometown: Victoria, British Columbia, Canada Diagnosis: POTS Website: https://www.amazon.com/Ms.-Dorothy-L.-Hilde/e/B0748429VH Photography Website: www.dorothyhildeart.com Email: timely_dottie@hotmail.com About Dorothy.... Dorothy Hilde is a mother of two boys. She lives in Saanichton, B.C. She has one grandson, Sawyer, and a mischievous rescue, Dash. She has a passion for photography, gardening, writing, and art. She is a published author with a series of children’s books called the Life of Dash. Her favorite past-time is hiking
  3. DINET member name: Dot Dash Hilde Dorothy's hometown: Victoria, British Columbia, Canada Diagnosis: POTS Website: https://www.amazon.com/Ms.-Dorothy-L.-Hilde/e/B0748429VH Photography Website: www.dorothyhildeart.com Email: timely_dottie@hotmail.com About Dorothy.... Dorothy Hilde is a mother of two boys. She lives in Saanichton, B.C. She has one grandson, Sawyer, and a mischievous rescue, Dash. She has a passion for photography, gardening, writing, and art. She is a published author with a series of children’s books called the Life of Dash. Her favorite past-time is hiking
  4. DINET Member Name: videopaw Lyndsie's hometown: Anaheim, CA Diagnosis: POTS website: https://www.etsy.com/shop/SulleysSpot In Lyndsie's words...... My name is Lyndsie and my service dog in training is Sulley. Sulley’s Spot was created after James P Sullivan aka Sulley. He is a labradane who will be a medical alert and mobility dog trained to assist me through the day. He is learning to pick up on changes in my heart rate and guide me to a safe place along with many other things. I am unable to leave the house without fear and Sulley has been a great help. He provides me with the
  5. DINET Member Name: videopaw Lyndsie's hometown: Anaheim, CA Diagnosis: POTS website: https://www.etsy.com/shop/SulleysSpot In Lyndsie's words...... My name is Lyndsie and my service dog in training is Sulley. Sulley’s Spot was created after James P Sullivan aka Sulley. He is a labradane who will be a medical alert and mobility dog trained to assist me through the day. He is learning to pick up on changes in my heart rate and guide me to a safe place along with many other things. I am unable to leave the house without fear and Sulley has been a great help. He provides me with the
  6. 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 Faceb
  7. 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 Faceb
  8. Ongoing Study Information Recruiting: Two new studies open for patients with MSA. The NYU Dysautonomia Center has 2 new clinical trials to test new drugs that are being developed for the treatment of OH in patients with MSA. Both compounds work by enhancing the body's levels of norepinephrine. Both studies are also being carried out at the Autonomic Dysfunction Center at Vanderbilt University. NYU Dysautonomia Center and Vanderbilt are long time collaborative partners in rare autonomic disorders. Contact information and more information about the studies can be found in this article.
  9. Ongoing Study Information Recruiting: Two new studies open for patients with MSA. The NYU Dysautonomia Center has 2 new clinical trials to test new drugs that are being developed for the treatment of OH in patients with MSA. Both compounds work by enhancing the body's levels of norepinephrine. Both studies are also being carried out at the Autonomic Dysfunction Center at Vanderbilt University. NYU Dysautonomia Center and Vanderbilt are long time collaborative partners in rare autonomic disorders. Contact information and more information about the studies can be found in this article.
  10. Below are questions sent in by DINET members and answered by our team of Medical Advisors. If you have a question for DINET's advisors, please send to webmaster@dinet.org Q: My neuro ordered IVIG that was denied and then denied again on appeal, even tho I had what most consider very good insurance. I read on your site that over 50% respond very well, but “more studies are needed”. My question is when will this happen? It seems after five years there would be some progress. Thanks, Lisa A: There is research money available for this. Several universities are applying for grant s
  11. Below are questions sent in by DINET members and answered by our team of Medical Advisors. If you have a question for DINET's advisors, please send to webmaster@dinet.org Q: My neuro ordered IVIG that was denied and then denied again on appeal, even tho I had what most consider very good insurance. I read on your site that over 50% respond very well, but “more studies are needed”. My question is when will this happen? It seems after five years there would be some progress. Thanks, Lisa A: There is research money available for this. Several universities are applying for grant s
  12. Newsletter Content Patient Advocates by Reanna Mathis Compression Stockings by Mona Hussein Meet the member: Kat's story by Chelsea Goldstein Medical Q & A, answers provided by DINET's Medical Advisory Team Dysautonomia Research Information Patient Guides Looking Back and Looking Forward - 2017 to 2018
  13. Newsletter Content Patient Advocates by Reanna Mathis Compression Stockings by Mona Hussein Meet the member: Kat's story by Chelsea Goldstein Medical Q & A, answers provided by DINET's Medical Advisory Team Dysautonomia Research Information Patient Guides Looking Back and Looking Forward - 2017 to 2018
  14. read the Featured Member story of Kelsey Boncato Watch the video, hear the music "Ain't Over" , performed by Idesia, lyrics by Daniel Oldham Those quiet tries, they mean something Those tired eyes, they're worth something And those grey skies, not fooled by no false pride, sweet lies Always on our feet while we're still breathing Ain't gonna retreat, this fight is freein’ Looking for belief are you? That dream I told ya, ain't ever over This world don't own us, This dream ain’t over Those hollow sighs, they help somehow Those absent cries, they're heard somewhe
  15. DINET member name: B.KELS Kelsey's home town: Los Angeles, CA Diagnosis: POTS/NCS Music video link: https://vimeo.com/224607332 My portfolio: https://bkelsstudio.cargocollective.com/ Notes on the project: My name is Kelsey Boncato and I am an LA-based visual artist living with POTS/NCS. My project is a music video I animated and directed for the electronic soul group, Idesia. The piece is entitled “Ain’t Over” This video was a collaborative effort. The Music Producer, Co-Director and writer of the music and lyrics to this song is Daniel Oldham. Daniel also lives a life strongly affecte
  16. DINET member name: Missy Milton Missy's home town: Fayetteville, AR Diagnosis: Dysautonomia (POTS & NCS) website: https://www.melissamiltonart.com/ In Missy’s words……. Living with dysautonomia requires me to spend many chunks of hours laying down. Laying down is a necessary tool for regulating my roller coaster blood pressure. After about a year of spending so much time being “stuck horizontal” a dreadful, negative boredom ensued. I decided to start painting again as a fun way to pass the time when I can’t move about. Before my illness, It had been over 30 years since I had
  17. DINET member name: Missy Milton Missy's home town: Fayetteville, AR Diagnosis: Dysautonomia (POTS & NCS) website: https://www.melissamiltonart.com/ In Missy’s words……. Living with dysautonomia requires me to spend many chunks of hours laying down. Laying down is a necessary tool for regulating my roller coaster blood pressure. After about a year of spending so much time being “stuck horizontal” a dreadful, negative boredom ensued. I decided to start painting again as a fun way to pass the time when I can’t move about. Before my illness, It had been over 30 years since I had
  18. Do you have a project, a craft/art, hobby or service that you do regularly, that brings you joy? What do you do that you feel passionate about? For many of us, being diagnosed is just the first step of many at the beginning of our adaptation to life with dysautonomia. To celebrate the resourcefulness, the creativity and the tenacity of our members, beginning this month, DINET will be selecting a member to feature on our site & our Facebook page. The feature member page will include your photo, links to your site, storefront (if you have one), your contact info and 2 photos of you
  19. edriscoll

    Farhad

    Also practices at Massachusetts General Hospital in Boston, MA
  20. edriscoll

    Farhad

    Offices also in Wentworth Douglas Hospital is Dover, NH Dr. Farhad specializes in Neurology and Comprehensive Neurology. This focus is on patient care and treatment, specifically on patients whose disorders do not fit clearly into established neurology subspecialties & difficult to diagnose disorders.
  21. The fact sheet below was published by the CDC. It is important information related to depression and chronic illness. Understanding it and treatments. issue-brief-no-2-mental-health-and-chronic-disease.pdf
  22. The fact sheet below was published by the CDC. It is important information related to depression and chronic illness. Understanding it and treatments. issue-brief-no-2-mental-health-and-chronic-disease.pdf
  23. Big guy, you are far from being a baby and I am far from brave. You show your bravery by being able to admit you need help & asking for it. And I want to put my journey in perspective for you so you don't feel like you should be further along or not strong enough with where you are now. It took me a total of 3 years to go through the onset of symptoms to leaving work and another 3 years at home struggling before I got a handle on things and adapted to the "new me". It was far from a short trip! And I have 3 granddaughters that motivated me. In particular a 4 year old that spends a lot of t
  24. Hello and welcome! I fought leaving work for a very long time. I reported directly to the owner of the company who was wonderful about making concessions for me to do some of my work from home, as well as never giving me a hard time for all of the time I had to take off. However, my illness grew to the point where I could only function with resting periodically throughout the day. I tried working mornings, returning home for a 2 hr rest, and then going back to work in the afternoon and staying late to make up the time. That worked for a short time period but after a while, I couldn't last
  25. Hydration and POTS syndrome According to the site, myheart.net, POTS is a syndrome associated with a multitude of symptoms, one of the most significant being a sudden elevation in heart rate when standing. This symptom is usually associated with dizziness and even passing out. The treatment of POTS syndrome is complex, however a key strategy is increasing hydration and preventing dehydration. Even healthy people (people without POTS or any other forms of dysautonomia) show improved functionality when well hydrated. The tilt table test, a hallmark test in the diagnosis of POTS,
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