Quick poll- taking control of your health

We’re curious about something: how are you taking charge of your health, and how is that changing conversations with your doctors? So, we thought we’d ask in a Quick Poll!

Do you feel more in charge of your health today compared to one year ago?

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What tools do you find the most helpful to manage your health? (check all that apply)

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Are you starting conversations about your health with your doctor more than you have in the past?

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19 thoughts on “Quick poll- taking control of your health”

  1. i have had pd dx for nearly 20 yrs. i have developed close relationships with my neuro/mds, pcp, and vision specialist. i know and listen to my body and they know when i say something is ‘different’ that something IS different. we then work together to decide what needs to be done.

  2. Patients Like Me is the only medical website I frequent and the only one I feel the need for. It meets any and all requirements that I could have in that it offers tracking for my medications while simultaneously allowing me to connect with others who share my condition. It’s ‘one-stop’ for Multiple Sclerosis and friendship.

  3. I am transitioning from PPO to VA. So far, I have had good care, but in that medical
    setting case loads for MD’s are staggering.
    Being able to freely advocate for myself and others, is part of why I joined PML, and will continue to do so. My friends here on PML, and my own knowledge base, assure me. I know I am getting the best care possible, because of what I have learned here. It makes the battle more interesting. I am PML patient for life. flapkatt

  4. PLM has been a godsend to me. It has been extremely
    Please do not use my last name! Thanks.

    valuable to me, both in being able to express myself and to receive encouragement and empathy from others suffering from my condition. It has definitely had a huge impact on me.

    Other major factors have been my therapist, my psychiatrist and, most recently, attending 12-step meetings. I have been unlucky in that I suffer from depression, but lucky in that I have found some good people and places to help me through it.

  5. I used to just listen to doctor, then ended up an overmedicated mess suffering from epilepsy! Never once in my first 5 years did a doctor explain why or for what reason they put me on a medication, I would do ok for a while then seizures would come again, uncontrolled by the medications. I finally had a car accident ending up out of work and unable to control my seizures on three drugs at once! I had to move back to my parents at age 49! I was a mess, when I finally me a neurologist who in 15 minutes told me and my dad more than the other fools did in 5 years! I was a over medicated mess on the wrong medications and never ever tested MRI, EEG to determine where my seizures came from! I was sent to Tampa General Hospital for a long term study! I spent one week under a EEG 22 electrodes on my head, It was so simple off medications had seizures, instantly found out I was perfect patient for brain surgery! All my seizures came from single location, Left Temporal Lobe, one month later I had a lobectomy, instantly became seizure free!!! Joy to my world!! I now 2 years later have returned to normal life, work and drive again, do my best to help others fighting the battle with epilepsy!! It is now my job to help others and provide HOPE in the battle with Epilepsy as it is a illness not a disease! People can win the battle, VNS, special diets, surgery if lucky, even THC works for some!! I just do my best to help others and live my life to its fullest now!!

  6. I wish there were more talk about C.C.S.V.I. and proper blood flow, and how it helps M.S.symptoms.

  7. Fairy Goth Mother

    I’m in a drug study and got tired of the run around, so now I just ask or send emails and bug the crap out of them until they answer my questions. It’s my body and I want to know what is going on or what they plan on doing. I don’t let my neuro push me around any longer.

  8. When I was first diagnosed with fibromyalgia I thought it was the end of my life as I knew it. I immediately went to my computer and on the first day I found PatientsLikeMe and I have been onsite ever since. Without PLM I don’t know where I would be today. I know that I would not be where I am. Thank you for all the help that you give to everyone who finds PLM. I know that PLM has been a life changer for me. I have learned so much about my condition and I am able to apply it to my every day life where it makes a big difference to me and all the people around me.

  9. Having dr’s who actually listen to what the patient says is very important! Because of this I’m finally getting better treatment now than in the past 7 years. PLM has been a great way to connect with people with the same problems and get that support in knowing that your not alone in this fight.

  10. The survey was insufficiently extensive.

    For those if us who have long used the Internet and research to manage our health/diseases, there were too few questions as to HOW we do this.

    Some doctors are founts of information, others less so. One thing the Internet has done for me is to supplement and/or surpass information from doctors.

    One of my MS neuros volunteers very little information.
    I keep him because his organization accepts Medicaid to cover what Medicare does not.

    Only when I do a good bit of research and come up with hypotheses, is he forthcoming with information.

    I do not see how this survey can be of value to PLM.

    Your questions were vague and non substantial.

    Please explain.

    Thank you.

  11. I have ALS. There hasn’t been very much information that the members of my health care team have given me that my wife hadn’t already learned about from the internet — she even diagnosed me before my doctors did. PLM and ALSTDI are great sites and resources, and we also just search out more information via web browser. One area that we couldn’t have taken care of on our own is my pulmonary care. The specific recommendations/prescriptions of my pulmonologist and my respiratory therapist for BiPap, cough assist and suction have been critical in managing and maximizing my diminishing ability to breathe. As for working with a feeding tube, we received virtually no guidance. Here again, fortunately my wife had done considerable research on the subject; and we were able to manage quite well on our own. Doctors and the whole team of medical professionals are very knowledgeable, and they’ll do their best to take care of you. But they’re also tremendously busy. My best advice: be your own strong advocate and your own teacher.

  12. I used to work for a health insurance company in one of the support fields. While I didn’t know much about insurance I learned to be very pro-active in my health. PF sort of blind sited me since the doctor in 2006 told me not to worry. That was the first and only time I’ll do that again! I believe our Doctors need to be open with all the information even thought some things we may not want to hear my opinion is it’s better to hear it then not. If I had heard in 2006 that this was something that could spread I would have done more than ‘not worry’
    Thanks for letting me comment

  13. I have been fighting Advanced Lymes Disease, AIDS, Burkitts Non-Hodgkins Lymphoma, Systemic Staff Infection, Severe Fatigue, Cognitive dysfunction, Severe Pain from all on the above, I am always waiting for the next hospital stay. All of the above within the last 4 years. Sometimes I wish I would have died and kept the pain away from my wife and son who have to care for me and I hold back from their lives, who are negative, thank God. I am a useless piece on skin and bones… All in all I am blessed. Stay Posive!!


  15. Thanks to everyone who responded to the quick poll and especially to those who gave a few more minutes of your time to make comments.

    Pamela’s concern about value of the poll is important to address so let me give a little background about why we decided to launch it.

    I have the great pleasure to represent PatientsLikeMe on a panel being held next week at the TRANSFORM Innovation Conference at Mayo Clinic. To initiate the discussion the panelists were asked to consider how the balance of care is changing as we have more information and greater control over our health.

    I thought it would be interesting to get some insight from real people in real time to balance what is being learned from studies about commonly used terms such as patient empowerment and patient engagement. Since time was tight we decided to experiment with a short non-scientific poll on our social media outlets including our blog, Facebook and Twitter. In addition we created a Forum post in the PatientsLikeMe Forum directing members to the blog.

    By the way, during the panel the same three questions will be asked of the audience using real time audience response voting gadgets!

    So the poll was not intended to match the calibre of our PatientsLikeMe research surveys. Rather we hoped the responses and comments might provide some quick perspectives from people who follow PatientsLikeMe about their personal experiences.

    So again, my thanks to you all and I’ll be sure to circle back here after the event!


    Sally Okun, RN
    VP Advocacy, Policy and Patient Safety

  16. Thanks to all who contributed to the poll. I participated in a panel at Mayo Clinic’s Center for Innovation TRANSFORM event earlier this week where the same questions were asked. The audience was an interesting mix of healthcare administrators, clinicians, designers and even people from Target! For the most part the responses to the poll questions were almost identical to the responses in our Blog Post.

    One topic got quite a bit of play in the room – Nancy Snyderman, Chief Medical Editor for NBC News who moderated the panel was interested to know if we need a new word for ‘patients’ such as ‘consumers’. One person in the audience suggested ‘partners’, another thought ‘clients’ sounded right.

    How about you? Does the word ‘patient’ work for you?


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