#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Patient Chat @patientchat Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients |
 | Patient Empowerment Network @power4patients RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat with @LReedsBooks here: You can find the topics we'll cover on today’s Empowered #patientchat with @LReedsBooks here: https://t.co/59gUTDyVjf |
| Patient Chat @patientchat Excited to have guest and patient advocate @LReedsBooks here. She is dedicated to ensuring the voice of the patient is heard in an effort to effect change in healthcare. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: New to tweet chats? Follow hashtag #patientchat and include it in every tweet during the next hour. You can engage with others on the topic. |
| Patient Empowerment Network @power4patients RT @LReedsbooks: Join #patientchat Fri 11/16 1pmET as we discuss the role of support and advocacy throughout the patient journey with guest @LReedsBooks https://t.co/pKzcRPMIpC |
| Patient Chat @patientchat You can find out more about @LReedsBooks and read her blog here: https://t.co/3TY86l7bjt #patientchat |
 | Vera Rulon FAHIMA @vrulon Hello everyone. Vera here from NY. Artist, advocate, strategist, questioner... #patientchat |
 | Your GPS Doc, LLC @yourgpsdoc Hi, I’m Nicole Rochester, physician, former caregiver to my dad, and CEO of @yourgpsdoc, a health advocacy and consulting company. I’m multitasking today so will probably be in and out, but happy to be here! #patientchat |
| Patient Chat @patientchat I’m Kara from @power4patients and I’m excited to be moderating today’s #patientchat |
| Vera Rulon FAHIMA @vrulon RT @patientchat: Excited to have guest and patient advocate @LReedsBooks here. She is dedicated to ensuring the voice of the patient is heard in an effort to effect change in healthcare. #patientchat |
 | Dee Sparacio @womenofteal @patientchat @LReedsbooks Dee here! Dx #ovca Stage3B 2005, #OC research advocate, blogger & co-moderator #gyncsm #patientchat |
 | Jamie Roger @JamieRoger8 Hello #patientchat . Jamie here from the beautiful state of CT and @SalemOaks Excited to share that we have now launched online learning about the research and development process and what patients need to know to be more #empowered https://t.co/x2ZltRkcH5 #patientchat |
 | Alan Brewington @abrewi3010 Alan here. My tired can beat up your tired! #patientchat |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
| Your GPS Doc, LLC @yourgpsdoc RT @patientchat: Excited to have guest and patient advocate @LReedsBooks here. She is dedicated to ensuring the voice of the patient is heard in an effort to effect change in healthcare. #patientchat |
 | Angela Cohen @angelee828 @patientchat Hey, Angela joining in from WI! 👋🏽 #patientchat |
| Your GPS Doc, LLC @yourgpsdoc RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients |
| Patient Chat @patientchat Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs and history #patientchat |
| Jamie Roger @JamieRoger8 great to see you @abrewi3010 #patientchat |
| Patient Chat @patientchat You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/6INB5Pmjv3 #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs and history #patientchat |
| Dee Sparacio @womenofteal @abrewi3010 Hi Alan how are you doing? tired - I get that #patientchat |
| Patient Chat @patientchat Today's #patientchat topic is The Role of Support and Advocacy Throughout the Patient Journey https://t.co/59gUTDyVjf https://t.co/l0VmATzwv1 |
 | Laurie Reed @LReedptadvocate @patientchat Hi! I'm Laurie -- writer, patient advocate and relatively new to PatientChat. Looking forward to today's discussion. #patientchat |
| Alan Brewington @abrewi3010 @JamieRoger8 Great to see you too! #patientchat |
| Patient Chat @patientchat I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat |
| Jamie Roger @JamieRoger8 @LReedsbooks @patientchat It's a wonderful group to be with. #patientchat |
| Patient Chat @patientchat Time to start our topics. Here comes T1: #patientchat |
 | Barby Ingle Official @BarbyIngle I am @BarbyIngle, speaker & author on chronic care and pain challenges. #patientchat #nervember |
 | Lillian Lake - Host of #SoulNestingChat @llake RT @patientchat: Time to start our topics. Here comes T1: Time to start our topics. Here comes T1: #patientchat |
 | Ken Taylor, RPIC @KenRayTaylor Hi, i am @kenraytaylor glad to be with you all. #patientchat |
| Patient Chat @patientchat T1: What types of support, if any, did you have when you were first diagnosed? #patientchat https://t.co/QWjxdftVKy |
 | Richard Zhao @richardzhao Hello, this is Richard from #Minneapolis #patientchat |
 | Heather McCullen @H_SalemOaks Hi #patientchat I'm almost on time for once! Heather from outside of Ann Arbor, representing @SalemOaks check out our exciting new webpage after the chat (or right now) https://t.co/7qXFMVXnrH |
| Jamie Roger @JamieRoger8 @BarbyIngle How have you been? #patientchat |
| Alan Brewington @abrewi3010 @womenofteal It’s been a long year! How are you? #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @patientchat T1 Family. That's it. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T1: T1: What types of support, if any, did you have when you were first diagnosed? #patientchat https://t.co/QWjxdftVKy |
| Dee Sparacio @womenofteal @abrewi3010 Had some knee issues but otherwise doing ok. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients |
| Lillian Lake - Host of #SoulNestingChat @llake RT @patientchat: Excited to have guest and patient advocate @LReedsBooks here. She is dedicated to ensuring the voice of the patient is heard in an effort to effect change in healthcare. #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T1 -- I had no one with me when I learned I had MS. Family didn't know I was seeing a neurologist. Partner (future husband) was working in London. It felt very lonely. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @patientchat @power4patients Hi Kara! Nice to meet you and have you moderate this afternoon. #patientchat |
 | Cameron J. Navy @navy_cameron Do patients want to learn more about #clinicaltrials? #patientchat |
| Dee Sparacio @womenofteal T1 Family and friends and I reached out to @CancerHopeNet to speak to a long term #ovca Survivor for emotional support. #patientchat |
| Laurie Reed @LReedptadvocate @llake @patientchat T1 What did it mean to you to have your family there? #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @yourgpsdoc Nicole! How awesome to cross paths today. Have you recovered from the conference? #patientchat |
 | Lynda Mitchell, MA, RHIA, CAE @LyndaGMitchell I'm Lynda from Phila, PA. Very involved in online patient support and advocacy for food allergy and asthma. Also multitasking (big allergy conference started today) but will jump in as I can. #patientchat |
| Cameron J. Navy @navy_cameron Would you want your doctor to be more knowledgeable about #clinicaltrials or would you want to do the research on your own? #patientchat |
| Jamie Roger @JamieRoger8 @LReedsbooks @patientchat My husband was with me, I can only imagine trying to go through it entirely alone. I chose to be alone at some appt's, but I am thankful he was there. #patientchat |
| Patient Chat @patientchat @llake @power4patients Nice to meet you @llake! Glad you could join #patientchat today :) |
| Vera Rulon FAHIMA @vrulon T1: Had to find my own resources, family, pretty good support from my doctor. But is wasn't a catastrophic dx, a common ailment. A family member, however, when dx'd w/ CA had an awful time getting support and guidance on what to do when, what questions to ask, etc. #patientchat |
| Richard Zhao @richardzhao T1: My family supported my brother when he had #stroke several years ago. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc @llake Hi Lillian! Yes, I have. The conference was awesome! #patientchat |
| Ken Taylor, RPIC @KenRayTaylor T1: Once my wife @BarbyIngle was diagnosed we were able to start researching the proper groups for help. The support group was not a good experience and we remained on our own. With the internet and social media we are able to keep who we want around us. #patientchat #nervember |
| Barby Ingle Official @BarbyIngle T1: I didnt have much help from the pro community when I first got sick, it took almost 3 yrs & 42 pros 2 get a proper Dx. I did have my parents & siblings (in another state) & my new neighbor (now husband) @KenRayTaylor who remain priceless n their help #patientchat #nervember |
| Alan Brewington @abrewi3010 A1 at the time multiple members of the #rheum community. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake Hi! Lil here having been blown in on the winds of one of our daily #NovemberSnow blizzards. Patient. /Caregiver/Young carers advocate My business is Compassion Consultancy - The Lake Method. Great to be here with you all today! #patientchat |
| Richard Zhao @richardzhao @bbhomebody Hi, Becky It is good to see you again. It has been a long time. I only find some free time today. #patientchat |
| Jamie Roger @JamieRoger8 RT @KenRayTaylor: T1: T1: Once my wife @BarbyIngle was diagnosed we were able to start researching the proper groups for help. The support group was not a good experience and we remained on our own. With the internet and social media we are able to keep who we want around us. #patientchat #nervember |
| Barby Ingle Official @BarbyIngle @JamieRoger8 having a bad week, hoping this weekend (11 yr wedding anniversary and 46th bday) is better. hope you are doing ok? #patientchat #nervember |
| Laurie Reed @LReedptadvocate @BarbyIngle @KenRayTaylor T1 When you were diagnosed, what type of support did your family and future husband provide? #patientchat |
| Patient Chat @patientchat Topic 2 (T2:) coming up... https://t.co/59gUTDyVjf #patientchat |
 | Frank R. @SarcoidosisofLI Hi I am Frank Rivera from NY. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc T1: My dad (dementia) had my sisters and I and multiple other family members. As the doc in the family, I did my best to advocate for him in healthcare settings but it was surprisingly difficult! #patientchat |
| Patient Chat @patientchat T2: How do you think having/not having support at the time of diagnosis impacted your decisions or course of treatment? #patientchat https://t.co/kSrGM7MiMM |
| Dee Sparacio @womenofteal @abrewi3010 Thanks I am enjoying PT . #patientchat |
| Laurie Reed @LReedptadvocate @KenRayTaylor @BarbyIngle T1 Why was the support group not a good experience? #patientchat |
 | Melissa VanHouten @melissarvh T1 Only immediate family. Very little information or support from the medical system initially. #PatientChat |
| Lillian Lake - Host of #SoulNestingChat @llake @yourgpsdoc Fabulous! I saw the highlights. I was putting out igniting emergencies at that time so I wasn't in sync all of the time, but it looked awesome & I responded randomly to tweets. #patientchat |
| Alan Brewington @abrewi3010 A1 At the time of diagnosis I didn’t need support, I needed a diagnosis. My frustration levels were high after years of running around without one. #patientchat |
| Jamie Roger @JamieRoger8 @BarbyIngle Congrats.I hope the excitement of the weekend helps a bit... even with just the mental aspect of everything. I'm doing better, still trying to figure out what is going on with my stomach since surgery (im thinking I might be getting a bug at this point) but better. #patientchat |
| Laurie Reed @LReedptadvocate @abrewi3010 T1 In what way did they provide support? #patientchat |
| Barby Ingle Official @BarbyIngle physical, took over driving, cooking, cleaning. Emotional daily phone calls, helping coordinate, as well as financial. Family took turns come to help Ken for the first 3 years #patientchat #nervember |
| Jamie Roger @JamieRoger8 @yourgpsdoc Which aspect of it was difficult? Just curious. #patientchat |
| Lynda Mitchell, MA, RHIA, CAE @LyndaGMitchell Very little patient info or support was available in the 1990's when my son as diagnosed with food allergies...which led me to start an online community for parents raising children with food allergies. #patientchat |
| Laurie Reed @LReedptadvocate @yourgpsdoc T1 Why was it difficult to provide support in healthcare settings? #patientchat |
| Dee Sparacio @womenofteal @LReedsbooks Didn't have the energy to get myself to the evening support groups so I used @CancerHopeNet & ACOR listserv. #patientchat |
| Jamie Roger @JamieRoger8 I think I was still a mess, but my husband helped keep me focused and positive and pushed for surgery as soon as possible. He just wanted to see me happier. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @LReedsbooks @patientchat sWell, it was all I had, so it was everything. It was a situation where healthcare wasn't interested until it was to their benefit. And anyway, people who know us feed us an energy that helps us to survive. They are essential to thriving. #patientchat |
| Vera Rulon FAHIMA @vrulon T2: Not having support - increased stress, decisions not aligned with personal preferences, #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @JamieRoger8: I think I was still a mess, but my husband helped keep me focused and positive and pushed for surgery as soon as possible. He just wanted to see me happier. #patientchat |
| Alan Brewington @abrewi3010 @LReedsbooks I was able to listen and be apart of their #rheum story which increased my medical literacy. I was a better communicator. #patientchat |
| Frank R. @SarcoidosisofLI @patientchat A1- When I was diagnosed the support I received was from my Wife. It was so hard to find any others with my disease. That is what made me go into advocating. I don't want anyone to ever feel as lonely as I did! #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @JamieRoger8 Jamie! It's so good to see you today! #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @KenRayTaylor: T1: T1: Once my wife @BarbyIngle was diagnosed we were able to start researching the proper groups for help. The support group was not a good experience and we remained on our own. With the internet and social media we are able to keep who we want around us. #patientchat #nervember |
| Patient Chat @patientchat @JamesStiegler Hi James, glad you could join in today! Make sure to include #patientchat in your responses so everyone can see :) |
| Your GPS Doc, LLC @yourgpsdoc T2: Support is critically important! A new diagnosis is scary for all involved. Knowing others are there as a sounding board (or just a shoulder to cry on) can help patients make more sound decisions. #patientchat |
| Alan Brewington @abrewi3010 A2 id learn long before diagnosis to fight for my quality of life. My support levels are not determinates of my #QOL. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @KenRayTaylor @BarbyIngle Internet and social media connection are essential - especially in rural areas or other conditions of isolation. #patientchat |
| Jamie Roger @JamieRoger8 @llake Great to see you as well Lillian. How have you been? Hope you aren't trapped from the weather... it was AWFUL here last night. My husband took over two and a half hours to get home in the snow (normally 60 min) . and today its in the 50s. #patientchat |
| Richard Zhao @richardzhao T1: I bought iPad for my brother to help him to train his figures and connect with family members and society. #technology can be used as support #patientchat |
| Frank R. @SarcoidosisofLI @patientchat A2- It made me do research for myself. It made me be even more of a fighter! In the beginning I was scared with nobody to talk to about the disease. #patientchat |
| Jamie Roger @JamieRoger8 RT @SarcoidosisofLI: @patientchat A1- When I was diagnosed the support I received was from my Wife. It was so hard to find any others with my disease. That is what made me go into advocating. I don't want anyone to ever feel as lonely as I did! #patientchat |
| Patient Chat @patientchat Topic 3 (T3:) coming up... https://t.co/59gUTDyVjf #patientchat |
| Angela Cohen @angelee828 @patientchat T1: I had Family and friends and I’m grateful to have them!! But now I also found people who “get it” and it’s a different type of support and a different type of family. #patientchat |
| Jamie Roger @JamieRoger8 #passion to help others is always a good reason to go into a new field. #patientchat |
| Patient Chat @patientchat RT @yourgpsdoc: T2: T2: Support is critically important! A new diagnosis is scary for all involved. Knowing others are there as a sounding board (or just a shoulder to cry on) can help patients make more sound decisions. #patientchat |
| Melissa VanHouten @melissarvh T2 Forced me to search online where I found fabulous support groups, full of information and help. They suggested doctors as well as courses of treatment -- and, for the 1st time since being diagnosed, I thought I might actually survive. #PatientChat #Gastroparesis |
| Patient Chat @patientchat T3: During treatment what type of support have you had? #patientchat https://t.co/2EXjTFrOdK |
| Barby Ingle Official @BarbyIngle T2. I stumbled finding a proper coarse of treatment without a proper Dx, and did a lot A LOT of wrong treatments, It made me worse off overall and long-term. Now my pro care team is part of my team, part of my life. #patientchat #nervember |
| Ken Taylor, RPIC @KenRayTaylor T2: It was the best thing that came out of the support group before we stopped attending. We heard what treatment options were available allowing us to research on our own and make wise decisions. I became more educated as a caregiver to my wife. #patientchat #nervember |
| Your GPS Doc, LLC @yourgpsdoc @JamieRoger8 EVERY aspect. As a family caregiver I was often invisible. I had to speak up often. Medication errors, faulty communication, you name it, we dealt with it. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc @LReedsbooks It wasn’t difficult to provide support. It was difficult advocating for my dad, even with a healthcare background. #patientchat |
| Jamie Roger @JamieRoger8 @yourgpsdoc At least you were there. Not everyone can pick up on all those errors. #patientchat |
| Dee Sparacio @womenofteal T2 somehow I missed Q2 - Support meant I could take part in a clinical trial, extra trips , tests my husband by my side #patientchat |
| Lynda Mitchell, MA, RHIA, CAE @LyndaGMitchell T1 - It's sad to see how hard it was for all of us to get that initial support and resources that we really needed when we were diagnosed! #patientchat |
| Dee Sparacio @womenofteal Got to run - I have to leave for another meeting at 1:30 . Hope to join you again soon. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @JamieRoger8 I'm good. Wow! I am glad he arrived home safely. How stressful it is waiting for someone to come through a storm (literally and figuaratively). We are trapped for the time being. Tomorrow we will dig out. Day of reprieve expected. Then plunge into the tundra again. #patientchat https://t.co/NRcdpU6eUv |
 | James Stiegler @JamesStiegler @patientchat A2 - it was so valuable to be able to reach out to #clinicalresearch scientists and oncologists to hear their advice and recs. I know most people don't have access to this type of network. It definitely put my mind at ease to know that the experts were on my side #patientchat |
| Jamie Roger @JamieRoger8 I had my family there to help, and friends to talk to. But I think most important was when I found a doctor who was compassionate and INTELLIGENT and willing to do everything it took to be successful. That was my turning point #patientchat #weekendphonecallstocheckuponme |
| Laurie Reed @LReedptadvocate @patientchat T3 As we move into treatment we become more knowledgeable and the types of support and the amount of support can be more than when we're first diagnosed. #patientchat |
| Angela Cohen @angelee828 @patientchat T2: I had support but not the same thing as people who understood. At times I was getting unsolicited advice. Sometimes I felt misunderstood/they or I didn’t understand & it made it harder to make treatment informed decisions. Too many opinions but it was my life. #patientchat |
| Barby Ingle Official @BarbyIngle T3. I created a team. My family, husband/caregiver, medical providers. We all work together to develop a plan and make sure I am getting best care I can, living life to fullest I can, and learn as much as we can for future is better! #patientchat #nervember |
| Lynda Mitchell, MA, RHIA, CAE @LyndaGMitchell T2- For me at the time, there was not good patient education, nor was there much literature (not that patients had access!) So it was a very hard time trying to navigate medically and was quite stressful. #patientchat |
| Vera Rulon FAHIMA @vrulon @JamieRoger8 Finding the right doctor is paramount. Sometimes it takes a while but when you do find them it makes all the difference. #patientchat |
 | Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @JamieRoger8: I had my family there to help, and friends to talk to. But I think most important was when I found a doctor who was compassionate and INTELLIGENT and willing to do everything it took to be successful. That was my turning point #patientchat #weekendphonecallstocheckuponme |
| Jamie Roger @JamieRoger8 I was so stressed out about it, and calling him wasn't helping because then I was stressing that he was distracted... and accident reports were coming in constantly. I hope the dig out isn't too bad... Did you get heavy snow or fluffy? GOOD LUCK! #patientchat |
| Melissa VanHouten @melissarvh T3 Continued support from my family & groups as well as a GI who is willing to research & who competently & compassionately works w/me on my care. Not all are so fortunate. #PatientChat |
| Patient Chat @patientchat Topic 4 (T4:) coming up... https://t.co/59gUTDyVjf #patientchat |
| Frank R. @SarcoidosisofLI @patientchat A3- First off my wife and daughter have been there for me. But when I decided to start my organization I reached out to anyone and everyone I thought that could help me. I worked with the national organization to get all inclusive. To have a voice! #patientchat |
| Alan Brewington @abrewi3010 A3 I don’t allow anyone with me during surgery or procedures. They can use the waiting room or go eat until I’m free. Maybe I’m a control freak but procedures are my time. #patientchat |
| Jamie Roger @JamieRoger8 @vrulon I started with just about the WORST doctor possible, so anything would have been better. But my surgeon was amazing, regardless of who I compare him to. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @SarcoidosisofLI @patientchat I am sending you warm hugs and gratitude for your courage. And a reminder we are never as alone as it feels. #patientchat https://t.co/nD2R7wLvxT |
| Patient Chat @patientchat T4: How do you think having support during treatment had an impact on your decisions or the course of treatment? #patientchat https://t.co/ZzDGp9Nk2U |
| Laurie Reed @LReedptadvocate @angelee828 @patientchat T2 This is an interesting observation. Sometimes we get what people think is support but it's not appropriate or helpful. #patientchat |
| Jamie Roger @JamieRoger8 @BarbyIngle Sounds like you have a great team fighting for your #QoL and your health. #patientchat |
 | International Pain Foundation® @iPainOfficial RT @BarbyIngle: T1: T1: I didnt have much help from the pro community when I first got sick, it took almost 3 yrs & 42 pros 2 get a proper Dx. I did have my parents & siblings (in another state) & my new neighbor (now husband) @KenRayTaylor who remain priceless n their help #patientchat #nervember |
| Lillian Lake - Host of #SoulNestingChat @llake @JamieRoger8 I am so sorry you had to endure that. It must have been frightening. I heard from others in your area there were hundreds of accidents. He had great blessings with your "virtual" support even if you couldn't talk directly. #patientchat |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: T2. I stumbled finding a proper coarse of treatment without a proper Dx, and did a lot A LOT of wrong treatments, It made me worse off overall and long-term. Now my pro care team is part of my team, part of my life. #patientchat #nervember |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: T3. I created a team. My family, husband/caregiver, medical providers. We all work together to develop a plan and make sure I am getting best care I can, living life to fullest I can, and learn as much as we can for future is better! #patientchat #nervember |
| Ken Taylor, RPIC @KenRayTaylor T3: I (caregiver) with strong family support have helped my wife @BarbyIngle through many treatments for RSD. Most of them not very helpful. She is in a stable remission now due to ketamine iv and an oral orthotic, 2 rounds of stem cell therapies. #patientchat #nervember |
| Patient Empowerment Network @power4patients RT @patientchat: T4: T4: How do you think having support during treatment had an impact on your decisions or the course of treatment? #patientchat https://t.co/ZzDGp9Nk2U |
| Patient Empowerment Network @power4patients RT @LReedsbooks: @patientchat T3 As we move into treatment we become more knowledgeable and the types of support and the amount of support can be more than when we're first diagnosed. #patientchat |
| Laurie Reed @LReedptadvocate @abrewi3010 T3 That's interesting. You don't think it would be helpful while you're sedated or recovering to have someone with you to ensure that this are happening as they should? #patientchat |
| Alan Brewington @abrewi3010 A4 dad always told me to not worry about money, plan my treatment options that are best for me. There are always ways to finance afterwards #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @JamieRoger8 It won't be bad. It's all relative. Two days ago 3" of heavy weight snow was exhausting. This is 8" of light fluff. Except it's blowing. My mother would say "I wish the good Lord would make up his mind where He wants it!" LOL That memory keeps me sane. ⛄️❄️😅#patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @yourgpsdoc: T1: T1: My dad (dementia) had my sisters and I and multiple other family members. As the doc in the family, I did my best to advocate for him in healthcare settings but it was surprisingly difficult! #patientchat |
| Jamie Roger @JamieRoger8 @llake On the plus side we are looking for our next vehicle (4-wheel drive) so I can stress a little less.Accidents were everywhere, he said tons of people were just stopped on the highway.1st storm is always the worst. #patientchat |
| Barby Ingle Official @BarbyIngle T4. I think it is vital. I have written 7 of my 9 books based around support, what it is, what it means, how it helps, tips, tricks, ideas for different situations that I struggled through the first time, had to learn as a chronic patient #patientchat #nervember |
| Lillian Lake - Host of #SoulNestingChat @llake @yourgpsdoc And now you are using your experience to help the rest of us! And we love you for that! Thank you! #patientchat |
| Heather McCullen @H_SalemOaks @abrewi3010 It's really good that you had that kind of support. It's super frustrating that cost is a factor in treatment choices. #patientchat |
| Melissa VanHouten @melissarvh T4 Gave me the confidence to speak up & to engage in my own care. I knew at least some involved would support my decisions & that makes everything just a bit easier. Also had family members willing to advocate for me in hospital & when I was too ill to do so myself. #PatientChat |
| Lillian Lake - Host of #SoulNestingChat @llake And here it is. The bane of every struggling caregiver. #patientchat |
| James Stiegler @JamesStiegler @angelee828 @patientchat When you get diagnosed with #cancer, so many people offer their opinions re: diet, supplements and alternative remedies. It made me feel like it was my fault that I got cancer. No thanks, I'll stick to the #clinicalresearch and #science. #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T4 Did having support during treatment make a difference? If so, in what way? #patientchat |
| Jamie Roger @JamieRoger8 @llake Haha, I love that. I am originally from western NY, near Niagara Falls, and the wind and drifts through the fields was AWFUL! #goodluck #patientchat |
| Richard Zhao @richardzhao No good patient education for family members as care takers. Patients reviews is something we can gather to provide valuable information. #patientchat #patientsentiment |
| Your GPS Doc, LLC @yourgpsdoc RT @llake: And here it is. The bane of every struggling caregiver. #patientchat |
| Patient Chat @patientchat Topic 5 (T5:) coming up... https://t.co/59gUTDyVjf #patientchat |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: T4. I think it is vital. I have written 7 of my 9 books based around support, what it is, what it means, how it helps, tips, tricks, ideas for different situations that I struggled through the first time, had to learn as a chronic patient #patientchat #nervember |
| Lillian Lake - Host of #SoulNestingChat @llake T4 Defintiely kept me set back on all levels - financially, emotionally, physically, psychologically. I lost 18 mos that was unnecessary to lose. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc @llake I truly feel it is my life’s mission/purpose. Thank you Lillian! ❤️❤️❤️ #patientchat |
| Your GPS Doc, LLC @yourgpsdoc @JamieRoger8 So true! #patientchat |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: T1: T1: Once my wife @BarbyIngle was diagnosed we were able to start researching the proper groups for help. The support group was not a good experience and we remained on our own. With the internet and social media we are able to keep who we want around us. #patientchat #nervember |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: T2: T2: It was the best thing that came out of the support group before we stopped attending. We heard what treatment options were available allowing us to research on our own and make wise decisions. I became more educated as a caregiver to my wife. #patientchat #nervember |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: T3: T3: I (caregiver) with strong family support have helped my wife @BarbyIngle through many treatments for RSD. Most of them not very helpful. She is in a stable remission now due to ketamine iv and an oral orthotic, 2 rounds of stem cell therapies. #patientchat #nervember |
| Laurie Reed @LReedptadvocate T4 Has anyone found support organizations that can help with the cost for treatment? #patientchat |
| Patient Chat @patientchat T5: How has support changed for you from the time of diagnosis through treatment? #patientchat https://t.co/Wsg2rcCQxr |
| Lillian Lake - Host of #SoulNestingChat @llake @patientchat T4 During Western Medicine treatment I continued to have no support. Worse, I was abused and degraded. Whe I went the holistic route I had more and different support either through information, listening, hugs, advice, treatment opportunities. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T5: T5: How has support changed for you from the time of diagnosis through treatment? #patientchat https://t.co/Wsg2rcCQxr |
| Lillian Lake - Host of #SoulNestingChat @llake RT @yourgpsdoc: T2: T2: Support is critically important! A new diagnosis is scary for all involved. Knowing others are there as a sounding board (or just a shoulder to cry on) can help patients make more sound decisions. #patientchat |
| Lynda Mitchell, MA, RHIA, CAE @LyndaGMitchell Food allergy management is mostly lifestyle management to avoid life-threatening allergic reactions and injecting with epinephrine. Learning from others about the need for action plans, allergen avoidance and navigating schools, restaurants, etc. - so valuable. #patientchat |
| Ken Taylor, RPIC @KenRayTaylor T4: Very important having support even if its only your spouse. Its easy to feel like nobody believes you. As a caregiver i think you should only keep the positive support and catch up with the others when your better and more educated with your diagnosis. #patientchat #nervember |
| Alan Brewington @abrewi3010 @LReedsbooks I work hard at establishing a friendship with my surgeons. By the time I go into surgery I’m comfortable with their staff & am ready for surgery. Surgeries aren’t scary, they are my opportunity at a higher #qol. #patientchat |
| Laurie Reed @LReedptadvocate @JamesStiegler @angelee828 @patientchat T4 Has anyone found a way to positively discourage unwelcome support or advice? #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @yourgpsdoc I think it is, too. 👍❤️#patientchat |
| Vera Rulon FAHIMA @vrulon T5: Having grown up in a very private family, I am now more apt to ask for help or advice since first diagnosed than I was when younger. This was the most impactful change for me. #patientchat |
| Patient Chat @patientchat RT @LReedsbooks: @JamesStiegler @angelee828 @patientchat T4 Has anyone found a way to positively discourage unwelcome support or advice? #patientchat |
| James Stiegler @JamesStiegler @patientchat A4 - I had a rare type of #cancer, and there wasn't a lot of research on it aside from 1 paper written 4 years ago. But I was relieved to know that same treatment was what my #oncologist and #clinicalresearch friends recommended. Next week I'll be 1 yr #CancerFree #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @JamieRoger8: @llake Haha, I love that. I am originally from western NY, near Niagara Falls, and the wind and drifts through the fields was AWFUL! #goodluck #patientchat |
| Jamie Roger @JamieRoger8 At the time of diagnosis, I was also going through a bit of other stuff, I just wanted it all to be "fixed." I wasn't ready for the time my body needed to heal between everything, now I am just thankful I have people to talk to as I recover. #patientchat |
 | R @rhrousu @richardzhao That is a really good point. Medical folks educate the patient, then the burden is on the patient to educate and inform their family & caregivers. Even just a “so your spouse has gastroparsis” handout would have been nice. #patientchat |
| Patient Chat @patientchat @JamesStiegler Congratulations James! #patientchat |
| Alan Brewington @abrewi3010 @H_SalemOaks For a long time I didn’t have health insurance. Dad said I was just spending my inheritance. #PatientChat |
| Lillian Lake - Host of #SoulNestingChat @llake @JamieRoger8 It is the worse. Not sure why. I gues we forget. We have a @subaru_usa Crosstrek. It loves the snow. It lives for a challenge! 😅☃️#patientchat |
| Jamie Roger @JamieRoger8 @KenRayTaylor I don't know if you should downplay your role like that "only your spouse." I'm sure you and other spouses have been the rock, the deciding factor, and the main source of strength and love for a lot of people. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @LyndaGMitchell: T2- For me at the time, there was not good patient education, nor was there much literature (not that patients had access!) So it was a very hard time trying to navigate medically and was quite stressful. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc T5: There is no treatment per se for vascular dementia, so support for my dad was the same and primarily consisted of being his voice when necessary and ensuring he was safe and getting appropriate care for all of his other chronic medical conditions. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @LyndaGMitchell: T1 - It's sad to see how hard it was for all of us to get that initial support and resources that we really needed when we were diagnosed! #patientchat |
| Barby Ingle Official @BarbyIngle @patientchat T5. We have settled into a routine and now flares are even more easy to deal with, we all have our responsibilities and make the best of each moment, even when it is a bad moment. We make it through together. #patientchat #NERVEmber |
| Laurie Reed @LReedptadvocate @patientchat T5 Did you find that support that had been available to you at the beginning is no longer available or useful? #patientchat |
| Melissa VanHouten @melissarvh T5 Extended family has become less involved, though not less caring. Life goes on. I find I do not need as much outside support now, as I am more aware & have adjusted to a large extent. Groups still major support system, though, as are disease-related nonprofits. #PatientChat |
| Jamie Roger @JamieRoger8 @llake @subaru_usa Do you love it? We are looking at a bigger @subaru_usa . I used to have a @Jeep #wrangler and I LOVED it, but we wanted something that a family could grow into a bit. #patientchat #newcar #suggestions |
| Lillian Lake - Host of #SoulNestingChat @llake @LyndaGMitchell It is. And frightening. And maddening. When you have a dx that no one understands it's hard - harder still is to have no dx because no one knows what is wrong. Support is even more essential. And that also means if you don't know, admit it, don't abuse the patient. #patientchat |
| Patient Chat @patientchat Topic 6 (T6:) coming up... https://t.co/59gUTDyVjf #patientchat |
| Barby Ingle Official @BarbyIngle @JamieRoger8 @KenRayTaylor I take his opinion as my caregiver and rely on him physically, but in the end, I have to be ok with whatever it is that is going to be done to/with me/my body #patientchat #NERVEmber |
| Jamie Roger @JamieRoger8 @JamesStiegler @patientchat congrats on being #cancerfree . I hope it stays that way. #patientchat |
| Patient Chat @patientchat T6: How significant of a role has advocacy – whether for yourself, from others, or with the help of an organization or online community – played for you in the course of treatment? #patientchat https://t.co/Vq0ezS2dWM |
| James Stiegler @JamesStiegler @LReedsbooks @angelee828 @patientchat I just smiled and said thank you. 🙂 I had my treatment plan and I needed to focus on healing and ignore the distractions. #patientchat |
| Ken Taylor, RPIC @KenRayTaylor T5: Support has gotten better but less of a need. You cant go back and set the expectations of your diagnosis. Now we just try to educate those who want to hear it and be nice to those who dont. Keep yourself in a good place mentally and physically. #patientchat #nervember |
| Lillian Lake - Host of #SoulNestingChat @llake @JamieRoger8 @subaru_usa @Jeep We absolutely love it! It has been through some major blizzards. It's been reliable. When rarely needed @subaru_usa service has been dependable & reliable. They have several supportive programs. Healthcare could take a page from them! 😅#patientchat |
| Jamie Roger @JamieRoger8 @BarbyIngle @KenRayTaylor Of course, I just meant that his support was probably invaluable to you. Just as my treatment would have been MUCH different without the support of my spouse. #patientchat |
| Vera Rulon FAHIMA @vrulon T6: Online "tribes" are there when you need them. Communities, advocacy organizations not only raise areas where healthcare needs to improve, but more importantly empower us to advocate for ourselves. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T6: T6: How significant of a role has advocacy – whether for yourself, from others, or with the help of an organization or online community – played for you in the course of treatment? #patientchat https://t.co/Vq0ezS2dWM |
| Richard Zhao @richardzhao @rhrousu Most support patients get are from direct family members or close friends. But, how care takers to know what to expect without medical knowledge? #PatientSentiment is my solution by interpreting patients reviews #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @patientchat: T5: T5: How has support changed for you from the time of diagnosis through treatment? #patientchat https://t.co/Wsg2rcCQxr |
| Jamie Roger @JamieRoger8 RT @llake: @JamieRoger8 @subaru_usa @Jeep We absolutely love it! It has been through some major blizzards. It's been reliable. When rarely needed @subaru_usa service has been dependable & reliable. They have several supportive programs. Healthcare could take a page from them! 😅#patientchat |
| Lynda Mitchell, MA, RHIA, CAE @LyndaGMitchell Caregivers need to take care of themselves too. I know research regarding managing food allergies shows decreased QoL for the parents, not just the kids, I don't think we can forget about how caregivers need to put the proverbial oxygen mask on first! #patientchat |
| Your GPS Doc, LLC @yourgpsdoc T6: I truly believe my dad would have died on several occasions had I not been there with my medical knowledge to intervene. I have many doctor friends with similar experiences. This scares me tremendously, as I know most don’t have this benefit. #patientchat 1/2 |
| Lillian Lake - Host of #SoulNestingChat @llake @patientchat T5 T1 Friends are starting to understand. At first many were in disbelief, then when they understood it was real, they were uncomfortable & distant out of fear. Now they're coming together helpfully. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @BarbyIngle: @patientchat T5. We have settled into a routine and now flares are even more easy to deal with, we all have our responsibilities and make the best of each moment, even when it is a bad moment. We make it through together. #patientchat #NERVEmber |
| Your GPS Doc, LLC @yourgpsdoc T6: I also know that MANY patients become educated about their condition and serve as strong advocates for themselves. I take my hat off to all of you. 2/2 #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @LyndaGMitchell: Food allergy management is mostly lifestyle management to avoid life-threatening allergic reactions and injecting with epinephrine. Learning from others about the need for action plans, allergen avoidance and navigating schools, restaurants, etc. - so valuable. #patientchat |
 | Jeremy Murphy @jeremypmurphy RT @patientchat: T1: T1: What types of support, if any, did you have when you were first diagnosed? #patientchat https://t.co/QWjxdftVKy |
| Cameron J. Navy @navy_cameron RT @patientchat: T1: T1: What types of support, if any, did you have when you were first diagnosed? #patientchat https://t.co/QWjxdftVKy |
| Cameron J. Navy @navy_cameron RT @JamesStiegler: @patientchat A2 - it was so valuable to be able to reach out to #clinicalresearch scientists and oncologists to hear their advice and recs. I know most people don't have access to this type of network. It definitely put my mind at ease to know that the experts were on my side #patientchat |
| Melissa VanHouten @melissarvh T6 Cannot overestimate its importance! I advocate for myself & for my #Gastroparesis community. Physical & emotional "payoffs" of that are beyond compare. Helps me get best possible care but, more significantly, adds meaning & purpose to my life again. #PatientChat |
| Cameron J. Navy @navy_cameron RT @JamesStiegler: @patientchat A4 - I had a rare type of #cancer, and there wasn't a lot of research on it aside from 1 paper written 4 years ago. But I was relieved to know that same treatment was what my #oncologist and #clinicalresearch friends recommended. Next week I'll be 1 yr #CancerFree #patientchat |
| Patient Empowerment Network @power4patients @patientchat Don't forget to join our Empowered #patientchat Facebook Group. It's a companion to #patientchat and has become a tremendous resource for patients, care partners, families and friends https://t.co/uz0MeaHV0d #patientchat |
| Jeremy Murphy @jeremypmurphy @patientchat A1: Very little if any in the 1970s. It was just my doctor and my family/parents. #patientchat |
| Lynda Mitchell, MA, RHIA, CAE @LyndaGMitchell T5 I've found that the need for support waxes and wanes as you move through your diagnosis and treatment journey. Also, as you become more empowered, you might get involved in other ways like advocacy (think of Maslow's hierarchy). #patientchat |
| Jamie Roger @JamieRoger8 I actually started my role with @salemoaks right before everything started & I was blessed to have joined a community of #patients #advocates & #healthcare #professionals that all seemed to guide or support me in some way. learning about #advocacy helped me heal. #patientchat |
| Barby Ingle Official @BarbyIngle T6. I had sea legs in the beginning when it came 2 advocacy. I just did what I was told, didnt ask ?s, Got horrible tx & incorrect dx, over & over. Being an advocate has given me responsibility, strength n my care & been helpful 4 self & others long-term. #patientchat #NERVEmber |
| Alan Brewington @abrewi3010 A6 my advocacy has changed into storytelling, sharing my story. I want/need friendship and support right now, sharing my story forces me to be vulnerable which hopefully will led to deeper relationships #patientchat |
| Ken Taylor, RPIC @KenRayTaylor T6: Advocacy is very important as it is a way to educate the masses and many times you find great leaders that #haveTheNerveToBeHeard helping your cause. Its a way to find empowerment and start conversations that create self worth when you feel worthless. #patientchat #nervember |
| Patient Empowerment Network @power4patients RT @abrewi3010: A6 my advocacy has changed into storytelling, sharing my story. I want/need friendship and support right now, sharing my story forces me to be vulnerable which hopefully will led to deeper relationships #patientchat |
| Vera Rulon FAHIMA @vrulon @BarbyIngle Now THAT's what we're talking about!!! #patientchat #awesome |
| Lillian Lake - Host of #SoulNestingChat @llake @patientchat T4 I probably wouldn't be here today. I was supported in my determination to not just exist, but to thrive. Typical healthcare made me feel like they hated me bec. I was a challenge. Holistic support was was about the whole of me & meeting me where I was #patientchat |
| Laurie Reed @LReedptadvocate RT @power4patients: @patientchat Don't forget to join our Empowered #patientchat Facebook Group. It's a companion to #patientchat and has become a tremendous resource for patients, care partners, families and friends https://t.co/uz0MeaHV0d #patientchat |
| Jeremy Murphy @jeremypmurphy RT @patientchat: T2: T2: How do you think having/not having support at the time of diagnosis impacted your decisions or course of treatment? #patientchat https://t.co/kSrGM7MiMM |
| Angela Cohen @angelee828 @LReedsbooks @patientchat IMO I feel like it comes from a good place most times. I met someone who found out I had multiple chronic illnesses, & her 1st response was to tell me 2 cut out gluten & then say “well at least you’re pretty!”🤦🏻♀️ I laughed it off bc she just didn’t know what to say. #patientchat |
| Patient Chat @patientchat Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: T4: T4: Very important having support even if its only your spouse. Its easy to feel like nobody believes you. As a caregiver i think you should only keep the positive support and catch up with the others when your better and more educated with your diagnosis. #patientchat #nervember |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: T5: T5: Support has gotten better but less of a need. You cant go back and set the expectations of your diagnosis. Now we just try to educate those who want to hear it and be nice to those who dont. Keep yourself in a good place mentally and physically. #patientchat #nervember |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: T6: T6: Advocacy is very important as it is a way to educate the masses and many times you find great leaders that #haveTheNerveToBeHeard helping your cause. Its a way to find empowerment and start conversations that create self worth when you feel worthless. #patientchat #nervember |
| Lillian Lake - Host of #SoulNestingChat @llake @JamesStiegler @patientchat Applauding your amazing courage and success. Thank you for sharing and still being here. #patientchat https://t.co/qe0yvS66Rm |
| Patient Chat @patientchat RT @BarbyIngle: T6. I had sea legs in the beginning when it came 2 advocacy. I just did what I was told, didnt ask ?s, Got horrible tx & incorrect dx, over & over. Being an advocate has given me responsibility, strength n my care & been helpful 4 self & others long-term. #patientchat #NERVEmber |
| Jeremy Murphy @jeremypmurphy @patientchat A2: It put more of the burden on me as an asthmatic. In someways it strengthened my determination to be more healthy and find holistically healthy ways to do that. #patientchat |
| Jamie Roger @JamieRoger8 @abrewi3010 And you are doing a wonderful job of opening up and being vulnerable. I truly believe #storytelling is the first step in #healing and opening up. #friends #patientchat |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: @patientchat T5. We have settled into a routine and now flares are even more easy to deal with, we all have our responsibilities and make the best of each moment, even when it is a bad moment. We make it through together. #patientchat #NERVEmber |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: @JamieRoger8 @KenRayTaylor I take his opinion as my caregiver and rely on him physically, but in the end, I have to be ok with whatever it is that is going to be done to/with me/my body #patientchat #NERVEmber |
| Lillian Lake - Host of #SoulNestingChat @llake RT @BarbyIngle: T6. I had sea legs in the beginning when it came 2 advocacy. I just did what I was told, didnt ask ?s, Got horrible tx & incorrect dx, over & over. Being an advocate has given me responsibility, strength n my care & been helpful 4 self & others long-term. #patientchat #NERVEmber |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: T6. I had sea legs in the beginning when it came 2 advocacy. I just did what I was told, didnt ask ?s, Got horrible tx & incorrect dx, over & over. Being an advocate has given me responsibility, strength n my care & been helpful 4 self & others long-term. #patientchat #NERVEmber |
| Ken Taylor, RPIC @KenRayTaylor @JamieRoger8 Sorry, i meant "only" to be "1" as that 1 can be the most important person in your life. Just to clarify. #patientchat |
| Jamie Roger @JamieRoger8 @angelee828 @LReedsbooks @patientchat That is awful. Period. #shocked #patientchat |
| Laurie Reed @LReedptadvocate @patientchat CT - One thing I take away froom today's discussion is that advocacy and support during a health challenge is very fluid. When support is there for us -- it gives us the courage and strength to move forward. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @patientchat T6 Self-advocacy can be draining when you're seriously ill. This is when another advocacy is essential - sharing the burden. Then as you strengthen, self-advocacy can be empowering & exciting. #patientchat |
| Barby Ingle Official @BarbyIngle CT: Advocacy is important. Support is needed from everyone involved. Have a great week everyone! Happy Thanksgiving! #patientchat #nervember |
| Patient Chat @patientchat @WankumTracy Hi Tracy! Follow along by clicking #patientchat and choosing the 'Latest' feature on the menu. And be sure to include #patientchat in all your tweets :) Here's a good blog explaining how to join: https://t.co/5JyoTGvZvH |
| Lillian Lake - Host of #SoulNestingChat @llake RT @yourgpsdoc: T6: T6: I also know that MANY patients become educated about their condition and serve as strong advocates for themselves. I take my hat off to all of you. 2/2 #patientchat |
| Jamie Roger @JamieRoger8 @KenRayTaylor Makes a bit more sense now. I'm glad you realize your importance in this fun journey of life and healing and finding comfort. #patientchat |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime. |
| Angela Cohen @angelee828 @LReedsbooks @JamesStiegler @patientchat Depends on the circumstances. If it happens often from the same person, I politely thank them for their information but I have a great team in place that I work closely with. If they’re giving inaccurate info, I may suggest where they can get accurate info #patientchat |
| Patient Chat @patientchat RT @llake: @patientchat T6 Self-advocacy can be draining when you're seriously ill. This is when another advocacy is essential - sharing the burden. Then as you strengthen, self-advocacy can be empowering & exciting. #patientchat |
| Patient Chat @patientchat Thanks so much @LReedsBooks for sharing your insights and being our guest for today’s #patientchat |
| Patient Chat @patientchat Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour |
| Jamie Roger @JamieRoger8 @BarbyIngle Happy Thanksgiving! Hope you have a great weekend of celebration and love! Happy Birthday!! #patientchat |
| James Stiegler @JamesStiegler @patientchat A6 - I had a hard time finding other #cancer patients that I could relate to and discuss the issues that were concerning to me during and after treatment. It made me feel alone and confused. Plus, my doctor told me to avoid going online 😬 #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @yourgpsdoc T6 I can feel this to the core. I am sorry. It begs the question of why this situation exists. I believe recourse begins in medical school - but even before through compassion acknowledgement through life. #patientchat |
| Laurie Reed @LReedptadvocate @patientchat @power4patients CT - Thanks Kara for leading our discussion today. I found it both interesting and helpful. #patientchat |
| Vera Rulon FAHIMA @vrulon @patientchat @power4patients Thank you! Singing off. Work to do!!! Another great chat. #patientchat |
| Melissa VanHouten @melissarvh RT @patientchat: Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour |
| Patient Chat @patientchat SCHEDULE NOTE: The next Empowered #patientchat will be Friday, December 14th https://t.co/71CyoklrGa. Hope to see you there! |
| Barby Ingle Official @BarbyIngle @JamieRoger8 Thanks so much! Happy Thanksgiving and Best wishes @JamieRoger8! #patientchat #nervember |
| Lillian Lake - Host of #SoulNestingChat @llake RT @patientchat: Thanks so much @LReedsBooks for sharing your insights and being our guest for today’s #patientchat |
| Melissa VanHouten @melissarvh RT @patientchat: SCHEDULE NOTE: SCHEDULE NOTE: The next Empowered #patientchat will be Friday, December 14th https://t.co/71CyoklrGa. Hope to see you there! |
| Lillian Lake - Host of #SoulNestingChat @llake RT @patientchat: #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime. |
| Patient Chat @patientchat .@power4patients is running a photo contest where you can share your photo in 3 empowerment categories for a chance to win a prize! Find out more here: https://t.co/P08CXPNoOF. Submit your photos using #PENBeEmpowered or by emailing admin@powerfulpatients.org #patientchat https://t.co/OhO9RdQI3r |
| Lynda Mitchell, MA, RHIA, CAE @LyndaGMitchell Thank you to everyone! #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @patientchat: T6: T6: How significant of a role has advocacy – whether for yourself, from others, or with the help of an organization or online community – played for you in the course of treatment? #patientchat https://t.co/Vq0ezS2dWM |
| Your GPS Doc, LLC @yourgpsdoc Absolutely, Lillian. I will say that in many cases it is not a lack of compassion but a lack of appropriate time and attention due to the SYSTEM of healthcare. #patientchat |
| Patient Chat @patientchat Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat |
| Jamie Roger @JamieRoger8 Hope everyone has a wonderfuL #thanksgiving !! Thank you @patientchat for a lovely discussion once again. #patientchat |
| Jeremy Murphy @jeremypmurphy RT @patientchat: #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime. |
| Jeremy Murphy @jeremypmurphy RT @patientchat: SCHEDULE NOTE: SCHEDULE NOTE: The next Empowered #patientchat will be Friday, December 14th https://t.co/71CyoklrGa. Hope to see you there! |
| Jeremy Murphy @jeremypmurphy RT @patientchat: .@power4patients is running a photo contest where you can share your photo in 3 empowerment categories for a chance to win a prize! Find out more here: https://t.co/P08CXPNoOF. Submit your photos using #PENBeEmpowered or by emailing admin@powerfulpatients.org #patientchat https://t.co/OhO9RdQI3r |
| Jeremy Murphy @jeremypmurphy RT @patientchat: Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour |
| Jeremy Murphy @jeremypmurphy RT @patientchat: T6: T6: How significant of a role has advocacy – whether for yourself, from others, or with the help of an organization or online community – played for you in the course of treatment? #patientchat https://t.co/Vq0ezS2dWM |
| Jeremy Murphy @jeremypmurphy RT @patientchat: T5: T5: How has support changed for you from the time of diagnosis through treatment? #patientchat https://t.co/Wsg2rcCQxr |
| Jeremy Murphy @jeremypmurphy RT @patientchat: T4: T4: How do you think having support during treatment had an impact on your decisions or the course of treatment? #patientchat https://t.co/ZzDGp9Nk2U |
| Jeremy Murphy @jeremypmurphy RT @patientchat: T3: T3: During treatment what type of support have you had? #patientchat https://t.co/2EXjTFrOdK |
| Cameron J. Navy @navy_cameron RT @JamesStiegler: @patientchat A6 - I had a hard time finding other #cancer patients that I could relate to and discuss the issues that were concerning to me during and after treatment. It made me feel alone and confused. Plus, my doctor told me to avoid going online 😬 #patientchat |
| James Stiegler @JamesStiegler @patientchat CT - support from the medical and #clinicalresearch communities and advocacy groups pay huge dividends in helping to clear the clutter and give patients the clarity and strength to continue their treatments #patientchat |
#patientchat content from Twitter.