Now that PatientsLikeMe is open to any patient with any condition, we’ve noticed more patients with different conditions sharing similar lifestyle modifications. One example is the use of a service dog.
What are the benefits – both expected and unexpected – of a four-legged assistant? We asked some of our members to talk about their service dogs’ best qualities.
The Uncanny Seizure Predictor
“[My seizure dog Mandy] has awakened me two times just as a seizure was about to start. I don’t know how she does it but she does. In fact, I had a seizure outside once (doesn’t happen often), and Mandy ran to a neighbor’s house and barked until they came to me.” - Mandysmother (Epilepsy patient)
The Sensitive Tear Licker
“He is my balance dog. He knows when I am about to have a migraine or a seizure and he even knows when I am hurting. Isn’t that funny? He licks my tears when I am crying, and he knows when to stay away from me.” - Some1Special (Mental Health and Behavior patient)
The Good-Humored Mind Reader
“[My service dog Mali] was the best decision I ever made. With her I now have some of my independence again, and for a woman who used to climb mountains and water ski, going to the store again after years never going anywhere alone, this means the world to me. The fact that Mali has a sense of humor and seems to read my mind is only another blessing to go along with my newfound freedom.” - Anahit (Fibromyalgia patient)
The Anti-Tripping Companion
“My neurologist thinks the service dog is preventing my gait from freezing! (When he heels, he constantly moves his head near my knee to check for a command.) I haven’t ended up on the ground or floor since I got him. He is great company! He is always willing to join me on my ’5 miles/day,’ and since I got him, no one has mistaken my Parkinson’s for being intoxicated!” - FriendlyTraveler (Parkinson’s disease patient)
Do you have an outstanding service dog too? Share your experiences in the comments section and don’t forget to add “service dog” to your list of lifestyle modifications.
We continue our series from last week of getting to you the person, not just the “patient.” Here’s an interview with member “Bradley25,” a member of our PatientsLikeMe Mood Community who was interviewed for our January newsletter. Read on to learn more about how comparing his condition over time has helped give him hope as well as his goals for 2011 . Enjoy!
* * *
(Amy) Where do you find hope?
(bradley25) I find hope when I look at my continued progress. When I look back and compare the severity of my condition over the years, I am amazed at how far I have come.
Fifteen years ago, my life was a complete wreck. I was in and out of the hospital and had trouble holding a job for more than a few months. Ten years ago, I had many of the same problems but life was improving from a treatment plan that I held. Within the last five years, I have found a good doctor and am properly medicated.
Although life isn’t perfect today, bipolar disorder no longer controls my life, and I find it interferes less and less with my job, social life and daily routine.
(Amy)What was the highlight of your holidays?
(bradley25)
The holidays did not go so well for me this year. I had fun spending time with the family and seeing some old friends, but my family visit was a little too long and I was ready to leave shortly after my plane landed. Unfortunately, this year’s holiday highlight was the return trip to the airport since I knew it would not be long until I was back in my own home.
(Amy) What are you resolutions or goals for 2011?
(bradley25)
I made some drastic changes to my life in July and plan to continue to work towards these goals. The most important change I have made in my life is sobriety. I am clean and sober and have been for the last six months. This change was a long time coming and is the largest obstacle in my long-term physical and mental health. Although it is often difficult, I notice many positive changes in my attitude and overall health.
(Amy) What are you most interested in learning from other patients this year?
(bradley25)
I find I offer advice to patients more often than I listen. Offering advice helps me; it makes me think about what I am suggesting. More often than not, I find I offer good advice that I do not necessarily follow myself. Hearing the words come out of my mouth can cause me to think about why I may not be doing what I am suggesting and to make changes in my own life.
The PatientsLikeMe research and development (R&D) team is excited about what we can all share and learn in 2011. Here’s a look back at some of what patients like you shared with us, and what we then shared with the world, in 2010.
The R&D team published and presented some unprecedented insights based on what you shared with us this year. In addition to attending and presenting at some noteworthy conferences in 2010, we also published a series of blogs and podcasts pulled together just for you.
Based on your feedback, the R&D team also implemented some changes to the medical architecture that will help improve the research we do, as well as your experience as a patient on the site. Ultimately, we are working to develop tools that help you answer the question: “Given my status, what is the best outcome I can hope to achieve and how do I get there?”
Today and tomorrow, we’ll be highlighting some of the work we’ve done in 2010 focused on various communities. Today, we start with the following (listed from newest to oldest community):
Organ Transplants
Researcher Catherine Brownstein MPH, Ph.D. presented a poster at the American Society of Nephrology (ASN) Renal Week in Denver. We compared the profile of our Transplants Community to published data from the UNOS/OPTN databases and found that about half of our patients knew about the exact degree of tissue matching they had with their donor. We found the fewest mismatches in organs that had come from deceased, rather than living donors. We also found that within the living donors the closest matches came from siblings, followed by parents, children, and then any other relative.
Epilepsy
In December, the team attended the annual American Epilepsy Society (AES) conference and presented a poster comparing our data to the Pharmetrics insurance claims database. We found that our Epilepsy Community is a little more likely to be female, more likely to be in their 20s-40s, and that they are more likely to be taking multiple anti-epileptic drugs than the broader epilepsy population. Exploring the biases in our data set and being transparent about them is one of our core values as a science team.
PatientsLikeMe is running an ongoing patient-reported outcomes (PRO) study with UCB to measure the physical, social and mental well-being of people with epilepsy over time. By the end of 2010, members of our Epilepsy Community had completed more than 1,300 PRO surveys. Thanks to all of you who contributed.
Fibromyalgia
The R&D team recently blogged about a report comparing our Fibromyalgia Community to the wider fibromyalgia population and revealed we are now able to declare with confidence that our community very closely matches the fibromyalgia community at large.
In 2010, we published a study entitled “Sharing Health Data for Better Outcomes on PatientsLikeMe” in the Journal of Medical Internet Research (JMIR). The study, conducted across several of our communities, established a link between sharing health data and benefits experienced on our site. The fibromyalgia-specific findings were that 21% of fibromyalgia members of our site strongly agreed or agreed that they had changed physicians as a result of using PatientsLikeMe, higher than the rate in MS (15%), mood (10%), Parkinson’s (9%), HIV (8%), or ALS (6%).
In response to popular demand for more research in fibromyalgia, the R&D team has also started reaching out to members of the scientific community to design research studies to take place in early 2011.
Mood
Looking again at the JMIR study specifically within the Mood Community, we found 26% of users agreed or strongly agreed that using the site had reduced thoughts about self harm; 23% agreed they had decided to start therapy or counseling after interacting with others on the site; and 22% agreed they needed less inpatient care as a result of using PatientsLikeMe. Here’s a video where I present some of these results, and give a walk-through of the Mood Community, at the UMASS Medical School’s Psychiatry Grand Rounds this year.
We also recently introduced a new tool in all of our communities called “InstantMe” to help you put your experiences in context. Based on the feedback we received from members of our mood community about the pilot tool (called “InstantMood”), it is now available for everybody.
In response to popular demand for more research in mood, the R&D team has also started reaching out to members of the scientific community to design research studies to take place in early 2011.
More highlights, including a video, coming tomorrow.
Posted by Lori Piscatelli Scanlon | December 27, 2010
Last week, we posted highlights from our December community newsletter interviews. As we close out 2010, we want to spotlight another question asked this month – one that is relative to all members, all patients (no matter the condition). What obstacles have you faced and overcome this year?
First of all, I became well enough to leave my local psychiatric hospital after having been an inpatient for six months. My anxiety means that all new things – even getting on a bus to go somewhere new – make me have severe panic symptoms.
I now make sure I am out of bed by 0700hrs during the week and make myself go out at least three times per week, whether it is meeting friends for coffee or attending appointments. Otherwise I will return to “avoidance,” whereby I cut off all contact with friends and family, including calls and text messages.
I have had to deal with and overcome the struggles that come with tardive dyskinesia. Reglan has been black-boxed [with a FDA-mandated warning about the risk of tardive dyskinesia] over the past two years, but I took it for three or four years before that. [Read kidneygirl1198and0505's Reglan treatment evaluation for more details.]
Signs of tardive dyskinesia may include: continuous and repetitive movements of the mouth, tongue, and jaw; facial grimacing; lip smacking, puffing of the cheeks; uncontrollable movements of the arms, legs, fingers, and toes; and swaying motions of the trunk or hips.
Mine has gotten so bad that I have regular grand mal seizures from time to time, and sometimes it’s hard to carry on a conversation without looking weird.
One of the biggest obstacles in my life this year was getting over the death of a very close friend. This person became ill and died within a few months. Her death made me more aware of how precious life is.
Another obstacle was in the adjustment of my medicine for Parkinson’s. My doctor wanted me to try a new medicine with fewer long-term side effects. I tried it for several months but did not do very well. I am currently back on my original medicine, taking a little more than before, but I have readjusted well.
This year I overcame a hard breakup. It was difficult because I thought we were going to be together for a longer term relationship than we were (only nine months).
It was also difficult to start dating again. I forgot how many people don’t know much about how HIV is contracted and that there are many people who would never date someone who is living with HIV or will date someone living with HIV but the fear of contracting HIV puts too much of a damper on the relationship. It’s a difficult process.
I’ve spent a lot of time this year getting used to the fact that I have become dependent on others.
Prior to diagnosis, I sat on the local council, was involved in the organization of all types of public elections and I was a trade union official. These were voluntary roles which involved helping others. Yet, initially, after diagnosis, I had an enormous difficulty accepting help from others. However, I’ve come to realize that I have a loving family, fantastic friends and very supportive colleagues. I have found that many of them don’t know what to do and are very glad when I am specific as to what they can do for me.
I’ve also learned that no question is too personal. I struggled a lot with questions about personal hygiene and when I found the courage to ask these most intimate questions, I found that the professionals were so familiar with the questions asked that, beyond the initial embarrassment, we quickly went on to find solutions. I have also found that when people ask questions about my condition, they are entitled to an answer, an honest answer.
Oh my, 2010 has been a huge year! I didn’t know how I was going to get through it whole, but here I am knocking on 2011, one step at a time. I had to rejoin the workforce on a part-time basis this year, after years of not working (not being able to work), but I had to as my husband had lost his job about 18 months previously, and we were facing bankruptcy!
So I’ve been working part-time since last February, about 17 to 32 hours a week. We did go through bankruptcy, lost our home, vehicles and our high 700′s credit score with it. But you know what, I survived. Actually, no, I overcame, with the help of a very supportive Sunday School class, great friends, and a wonderful husband and daughter.
I work for the US Forest Service and, as of July, made it to retirement age still working. Two times they tried to force me to take a disability retirement. To keep working I have had to move around to several jobs in four different states because of my health. Not only have I made it to retirement age, but I am still working even though they are trying to get rid of me once again. (What a joke when you consider that the federal government has a quota for disabled employees).
It has meant I have not only had to work in a variety of locations, but doing different kinds of work. Just in the time on this forest I have worked as the Oracle DBA in the computer shop, in GIS, later in Forest Planning, with a crew of five Soil Scientists, a Botanist and myself mapping the soils and ecological types and writing recommendations for management. And now for the last two years I have been “unfunded” and doing all kinds of random jobs for projects in the office. Just this year that has included supporting the USFS in legal challenges as well as jobs so simple as filing paperwork and addressing envelopes.
For me, with multiple sclerosis and ADHD, my main problems have been the concentration to do what I need and want to do and fighting the progression of MS. I have RRMS [relapsing remitting MS] but since I have had it for 25 years, ever so slowly, it is progressing at the same time I get exacerbations. I have a new neurologist too, and he is part of a big group and getting through when I am having problems, is a problem.
Plus, with only SSDI [social security disability insurance] and not being able to find a part-time job, I have had to stop taking some needed meds and not going to necessary doctor’s appointments (e.g. my eye surgeon/doctor to see if the optic nerve is still swollen and I can’t do a necessary MRI because the insurance company won’t pay.) So to get help for my asthma, I am doing a research study to get free care. I haven’t found one for MS or depression yet.
Posted by Lori Piscatelli Scanlon | December 22, 2010
In December community newsletters (launched earlier this week), we asked some of our members to think about what they’ve shared and compared in 2010. Below are highlighted answers from each interviewee across all nine community newsletters. Thank you for your contributions.
We also want to thank all of you who have contributed to the 90 newsletters we ran this year, including the newly launched ones in our Epilepsy and Transplants communities. Finally, a special thanks goes out to our newsletter writer, Amy Morton, for pulling these together every month.
PatientsLikeMe has provided me with new friends-people who are experiencing the same problems as I am. I’ve learned that there isn’t a single question that won’t get a vast myriad of answers from the community. I’ve learned that we’re all very different people, and I’ve learned we don’t always agree. I’ve learned that we all care enormously for each other and are very eager to help those who find themselves in the same boat as we are. But most of all I’ve learned that I am not on my own. I’m not the only one facing a bleak future and not the only one who is able to appreciate what he has at the moment.
I really like it here in that I can keep track of all my meds with their side effects, etc. Plus I like it that I can list symptoms and have a history of all of it to review and learn from and share with my doctors. I hope that my input on meds, therapies, etc., helps other people. It is good not to be alone.
It has given me the experience of reading about others who are in situations similar to mine. It has shown me that I am not alone. I love reading the newsletters and the comments from other readers. It also helps to keep me up-to-date on any new suggestions or treatments.
Also, I became acquainted with someone online through PatientsLikeMe. We actually live in the same town, both work in the field of Education and have had Parkinson’s for the same length of time. Getting together with her was a pleasure, and she introduced me to the idea of meeting with a support group, which I had never done before.
It is invaluable. I find the Symptoms and Treatments areas so helpful. I have learned (from genuine people who are taking these meds) that some of my “quirky” side effects and sufferings from the meds I take can and do happen to others and are not imaginary. (My general practitioner and Consultant just brush the list aside and shrug their shoulders).
I have learned that I am not alone with my illnesses, which is good to know, and I have also learned that there is “light at the end of the tunnel.” I try to keep my profile as up to date as possible in the hope that it will be helpful to at least one or two members. I rate my Daily Mood [now called InstantMe] at least five days per week and always complete my Mood Map, again for the same reasons.
Well done PatientsLikeMe and its members. Keep going, you are doing really good work and long may it continue.
I love organization and having PatientsLikeMe help me to organize all of my medical information. I would like to have an ability to log simple notes on the PatientsLikeMe profile so every time I go to my doctor I can make some general notes (if needed) for that visit on my experience and what was covered with my provider.
(Note that all users can now use InstantMe to add notes/annotations to your Doctor Visit Sheet)
PatientsLikeMe has been such an encouragement to me, not only in what others have given to me through sharing their stories, but also by opening up a window for me to be an encourager also. I love the newsletters that are super reminders of how to not get off track, and also how to be good to myself.
I think I have been pretty good at sharing, but this has been one new method, especially with some of the health issues with others facing similar situations. In the past I have answered questions for people who had their first seizure or just questions, but with this site, I am able to communicate with others who have had the same operations, take the same medications, etc., and really understand things better (from a different perspective).
PatientsLikeMe has helped me so incredibly much! I’ve made so many friends that I thank God for every day. It’s just like, no matter what you have or haven’t had transplanted, whichever organ you need or have, everyone on here understands you and what you’re going through.
I just really hope that people can say that about me. It took me awhile, but no one is alone out there. Everyone is going through their own personal struggles. I just want everyone to know I am all ears!
Here at PatientsLikeMe we strive to give you the tools and functionalities you want and need to gain insights into your conditions, including putting your experiences in context. Today, we’re introducing a new tool in all of our communities called “InstantMe.” Want to chart how you’re feeling day in and day out? Now you can.
All you need to do for InstantMe is answer this simple question – How are you feeling now? You can answer this question as many times in a day or week as you’d like. InstantMe will appear on your profile to add more context to the other experiences you share there, as well as on your Doctor Visit Sheets so you can communicate more effectively about how treatment changes have impacted the whole you. You can even sign up for a reminder and answer InstantMe right over email.
Why InstantMe? Many of you already use the measurement tools we have in place to put your experiences in context - for example, there’s the mood map, quality of life scale, or clinical rating scales (e.g., ALS functional rating scale). These instruments (which you typically fill out weekly or monthly) measure the severity and impact of medical conditions on your life. But what about all the fluctuations that all of us experience day-to-day or even throughout one day? Maybe they’re due to our health, our treatments, or perhaps something totally unrelated, like holiday planning or work.
For a couple of years, mood community members have been using a tool called “InstantMood.” They answer one simple question (“How would you rate your mood right now?”) and then choose an answer (“Very good,” “Good,” “Neutral,” “Bad,” or “Very bad.”) Members can even add a short note (140 characters) to each rating to remind them what was happening at that time. It’s a popular functionality and helps members put context around changes in their overall condition. Here are some trends members can watch with InstantMood:
What we’ve seen and heard from the Mood community is that this ability to “instantly” rate how they’re feeling is useful at both the individual and community level. As a user, you give a little something and get instant feedback. We like that concept. In fact, you’ll be hearing a lot more about it in the blogs to follow this week, so stay tuned.
With this in mind, we’re excited to roll out InstantMe for all of our communities (thanks in part to what we learned from Mood). Because we know there are more things that can influence how you feel than mood alone and we believe it’s important to have measurements that get at your whole well-being, we have changed the question slightly.
It’s a simple question, but probably one of the most important ones to ask you. So tell us – How are you feeling now?
In honor of this month’s Mental Illness Awareness Week, here’s a snapshot of what’s happening in our PatientsLikeMe Mood community. Launched in 2008, the community now has more than 18,000 patients. Below are some interesting facts about the community, so please read and share on!
DID YOU ALSO KNOW…
You can search for patients under 15+ diagnosis categories, including depression, bipolar, obsessive-compulsive disorder (OCD), post-traumatic stress disorder (PTSD), anxiety, addiction to tobacco, addiction to alcohol, eating disorder and more.
Patients are using more than 1700 treatments, including prescription drugs, supplements, over-the-counter medications, life-style modifications, therapies, and more.
The top lifestyle modification reported by our patients is positive self talk; and sleep is the #1 exercise cited.
Some of the top topics “tagged” in our forum discussions to date include specific treatments (like Lamictal, Lithium, Wellbutrin and Seroqul), as well as borderline personality disorder, coping, anger and journaling.
Posted by Lori Piscatelli Scanlon | October 14, 2010
Last week was Mental Illness Awareness Week. Did you know there are more than 18,000 patients in the PatientsLikeMe Mood Community? Stay tuned for another blog tomorrow with some interesting tidbits about this community. To warm us up, here is a recent newsletter interview we did with three-star member – marathoner452. Read on to find out what she recently told our very own Amy Morton about what brings her joy, returning to teaching, and what she has learned from the PatientsLikeMe Mood Map.
* * *
(Amy) What brings you joy?
(Marathoner452) My two-year-old niece and four-month-old nephew make me so happy.
During my most recent depression, my niece and her parents (my nephew wasn’t born yet) lived at my house and just waking up in the morning and knowing that as soon as I made it downstairs she’d be chanting my name and wanting to sit on my lap at breakfast and pop the bubbles in my cereal was enough of a reason to live another day.
You don’t remember much from when you’re almost two-years-old. I wanted her to remember me. When she gets old enough to understand, I intend to tell her how she helped save my life.
(Amy) What is your top priority these days?
(Marathoner452) I am working on moving back to live with my girlfriend, who has been diagnosed with depression herself. I lived there for two years prior to moving home a year ago at the crisis point of a severe depressive episode.
This means leaving behind a job that’s brought me to stable over the past three months, working as a job coach with adults with developmental disabilities and finding something equivalent once I move. Friends and family both have expressed concern over living that far away from my strong support network [back home], but I’m willing to take the risk.
(Amy) How does your condition affect your social life?
(Marathoner452) I am by nature a very introverted person, and when my anxiety is heightened by a mood episode, I become even more withdrawn. I’ll even cancel plans to spend time with close friends because even the travel or being around strangers is uncomfortable, and I’ll avoid answering the phone. Kinda ironic that I want to get back to being a teacher!
(Amy) What keeps you coming back to PatientsLikeMe?
(Marathoner452) See above. Online forums such as PatientsLikeMe and web chat are perfect for me – low stress and on my own schedule. Crowds and oftentimes even in-person support groups are too intimidating.
I also find all the charting to be very interesting. Sometimes the Mood Map survey will show me something I didn’t even know, like wow, I didn’t realize I was feeling that anxious. And these days I love when it pops out a really high “function” score. That makes me feel like there is hope for me to lead a stable life.
(Amy) Thank you so much for sharing with us today, Marathoner452!
Yesterday, we announced a new report called The Patient Voice for Inpatient Therapy, which highlights patients’ top tips for having a positive inpatient therapy experience. Maureen Oakes, community manager for PatientsLikeMe Mood Conditions Community (for people with depression and other mood conditions), recently interviewed 3-star member, Mountabora, about her experiences with hospitalization. Here’s what she had to say:
(Maureen) You note in your member profile that you have been hospitalized a few times. What were those experiences like?
(Mountabora) Being in a psychiatric hospital is kind of like being at summer camp. You’re away from home, living in close quarters with strange people, and participating in structured group activities which may or may not have a purpose. There are a lot of rules, and you lose privileges if you don’t follow them. You have to get up way too early in the morning and eat three meals a day at the cafeteria.
There’s a lot of emphasis on learning coping skills, typically through classes and worksheets. There’s also a lot of emphasis on medication; most patients are on at least two or three psychoactive drugs. You go to therapy and you see a psychiatrist, but much more often than you would if you weren’t hospitalized. It’s basically a condensed version of what you’d get as an outpatient, in a controlled environment.
I’ve been treated at six different hospitals in four states over the last ten years, and I’ve had both wonderful and horrible experiences. The state hospital I went to was more like a prison than a hospital. Patients were restrained and drugged against their will, the nursing staff obviously didn’t care, and I had to wait days to see a psychiatrist and then threaten to take them to court before they’d discharge me. The private psychiatric hospitals were much better, with specially trained art, exercise, and family therapists, productive classes and groups, and lots of one-on-one time with nurses, therapists, and psychiatrists. Unfortunately, this seems to be a situation where you really do get what you pay for.
(Maureen) If you could tell other patients one thing about having a positive inpatient therapy (or hospitalization) experience, what would it be?
(Mountabora) Hospitalization is very expensive, so treat it like you would any major purchase. Discuss options with your psychiatrist and have a clear idea of why you’re going in and what you’re expecting to get out of it. Once you’re there, take full advantage of the services the hospital offers. Learn as much as you can from both staff and fellow patients, participate fully in groups and individual therapy, and make the most of the (hopefully) peaceful and structured atmosphere.
I also would recommend that anyone with a serious mental illness take some time to learn about patients’ rights in their state or country. You never know when you’ll be put into a situation where you have to advocate for yourself.
(Maureen) In a our new report, The Patient Voice on Inpatient Therapy, we summarize top themes cited by our community members regarding their positive inpatient therapy experiences. Do you have anything to add regarding these themes?
(Mountabora) I really wish hospitals would put more emphasis on coordination of care right from the start. Almost every time I’ve been hospitalized, I’ve been thrown in with an unfamiliar psychiatrist who gives me a new diagnosis and a completely different set of medications. It took a lot of painful trial and error for my psychiatrist to come up with this diagnosis and treatment plan, and I’d really rather not have to go through it all over again every time I go in to the hospital.
(Maureen) You’ve been a very active member of the PatientsLikeMe community for a while now. What do you find helpful about using the site?
(Mountabora) I like being able to keep a centralized record of my mood and treatment history that I can use as a reference or share with treatment providers. Theoretically, this information gets transferred from provider to provider, but in reality, I know that a lot of things have fallen through the cracks over the years and my quality of care depends on me being able to give an accurate account of what’s happened so far. I wish I had started this when I was first diagnosed. Maybe I wouldn’t have been hospitalized so much.
(Maureen) Thank you for sharing your story and experiences with our PatientsLikeMe community, and with the mood conditions community at-large!
Today’s patient has a loud and strong voice. At PatientsLikeMe, we hear you. You’re saying, “I know this disease, I know how it acts in the real-world, and it’s time to share that with others.”
With thousands of patients sharing data and experiences every day on our site, we’ve decided to launch a report that takes what you, the patient, knows and shares it with you, the patient community at-large. For obvious reasons, we’re calling it The Patient Voice.
The Patient Voice is a collection of wisdom, sentiments and experiences shared by patients like you regarding important issues you face today. The reports include PatientsLikeMe member tips, suggested checklists and questions to ask yourself, and real-world patient experiences, as well as some fun facts from about the PatientsLikeMe community.
The first report is from our Mood Conditions Community, representing patients with depression, anxiety, bipolar, OCD and PTSD, on the topic of inpatient therapy (or hospitalization). It’s a topic that comes up quite a bit in our forum, and patients are openly sharing their positive (and negative) experiences with one another. We’re now sharing some of the positive experiences with you. Take a look at the free report and let us know what you think. Share it with your friends and loved ones who might find it useful. And, please, join the conversation on PatientsLikeMe today. You have a voice, so let’s hear it!
Posted by Lori Piscatelli Scanlon | March 27, 2009
In a recent blog post by New York Times’ Tara Parker-Pope, PsychCentral highlights “The 12 Most Annoying Habits of Therapists.” Launched a year ago this week, our very own Mood community has more than 1,300 patients using “Individual Therapy” as a treatment for their condition. We asked them to tell us some of the habits they find most annoying and elaborate on the ones outlined by Parker-Pope. Here’s what they had to say about some of those respect issues:
I had a [therapist] fall asleep during the session! I walked out (without paying of course).
My biggest peeve is with therapists who refuse to work in conjunction with my psychiatrist and his diagnosis.
I hate it when therapists talk down to me. I’m crazy, not stupid!
[Therapists:] Don’t look at patients as if they’re wacky or as if they’ve just said something wacky. We are always reading faces and reactions, the last person we need to be judged by is our therapist. Be mindful of how “tuned in” we are to your body language.
I love my current therapist, but…he once took a call in the middle of a session, obviously from a friend or family member (nothing critical), it had to do with whether or not they should order pizza…I don’t know if he was trying to get me to react or what, but with low self-esteem already, his disregard for my time and his placing more importance on ordering a pizza than on helping me really made me angry and hurt.
I spent 30+ years in the business world, so things like consistent lateness, taking private phone calls on my time, clock watching and snacking while in session are all things one would never do when with a business client. Perhaps therapists should take a few business courses.
On the flip side, many of our members (those with depression, anxiety, bipolar, OCD, PTSD) had some positive things to share about their therapy experiences. Here are a few of those comments:
My doctor’s advice: ‘don’t let go of the things you enjoy doing.’ I decided to fight for those things–reading, creativity, enjoying the outdoors, animals, writing with fountain pens, hats, etc.–because they’re part of what makes me ‘me.’ I think it was great advice and should be passed on to other people.
[My therapist] is flexible about what kind of therapy works for me from week to week. She has a lot of resources to recommend, and when one isn’t my thing, we try another. This goes along with flexibility, but it also shows that she knows her stuff. She has helped me find everything from relaxation tapes to yoga classes to PTSD workbooks.
My therapist won’t let me get away with anything. I think this is a very good trait in a therapist. She also believes I know my own body better than anyone else.
She is never shy about throwing me a compliment. In fact she has told me several times that she admires certain qualities about myself.
Got some experiences to share? We’d love to hear ‘em! Leave a comment below.
Posted by Lori Piscatelli Scanlon | March 23, 2009
A year ago today, PatientsLikeMe launched our combined Mood community for patients with depression, anxiety, bipolar, obesessive-compulsive disorder and post-traumatic stress disorder. It was first announced to the world in Thomas Goetz’s article, Practicing Patients, featured in New York Times Magazine.
Since then, more than 8,700 patients have joined the community, sharing detailed information about their symptoms, treatments and overall progress to learn more about themselves and others. Besides specific drug therapies (like Clonazepam or Lamotrigine), did you know many patients cite Listening to Music and Journal Writing as top treatments as well? Check out what they have to say.
Do you have problems concentrating? That’s the number one symptom reported by our members. Other top symptoms include muscle tension, headaches, back pain and stomach pain.
In the coming weeks, we will continue to share some interesting tidbits about the community, including some powerful personal stories straight from our members. Stay tuned!
While I spent most of my time at our sponsor table answering questions about PatientsLikeMe, I overheard other attendees discussing a concept I found very interesting. A talk called “I Am Not My Illness: The Importance of First Person Language” by Stephen Propst prompted a lot of discussion from attendees about the distinction and power of saying “I am bipolar” versus “I have bipolar.” He noted that people with other conditions do not say “I am cancer” or “I am diabetes” and that the language we use has the power to change how we think about the intersection of our health and our identity.
As I listened to people hashing out the details and implications of being more thoughtful with our language, I thought more about how it relates to the collective power of peers. Face to face conversations are a time-tested method for empowering others and making change, but having conversations online can magnify your message far beyond a two person discussion. Having read over 2000 threads in our Mood community in the last 7 months, I know that our members empower one another on a daily basis. While a single forum thread may have 20 replies, it can be viewed by hundreds of people, escalating the impact of the conversation far beyond its participants. Add to that the ability to see each person’s status from their shared health data profiles, and everyone has the opportunity to learn in multiple ways on PatientsLikeMe.
This single lecture sparked great conversations among the few hundred folks who attended the event, and now the conversation is continuing with our members. Empowering patients through conversations and shared data is producing real change: that’s the power of peers.
This month marks the two-year anniversary of our flagship ALS community. It’s amazing to reflect on what we’ve achieved in just two short years. Not only did we build the world’s largest treatment and outcome sharing communities for ALS (1,800+ patients), MS (4,500+ patients) and Parkinson’s (1,300+ patients), but this year we began evolving into the powerful research platform we always envisioned we could be.
At the heart of this research initiative are our new community reports, which analyze the makeup of our patient communities. In January, we released our first MS Community Report covering factors such as first symptoms, age of diagnosis, disease type, etc. Recently we released our ALS Community Report, with the Parkinson’s Community Report to follow shortly. You can find the much-anticipated results on the blog as well as the ALS forum.
But that’s just the beginning. Your commitment to collaborative learning has now driven our evolution to the next level. On March 7th, we launched the ALS Lithium Study. As co-founder Jamie Heywood wrote in a recent blog entry, “Today, we allow patients to begin to answer how to treat ALS.” What could be more central to our mission than that? We are delighted to collaborate with Humberto Macedo, a patient, and Karen Felzer, PhD, whose father has ALS, on the study. “Together…we will run the first real-time, real-world, open and non-blinded, patient-driven trial,” wrote Heywood.
The question at hand is: Does lithium slow ALS? With almost 150 patients participating to date, we already have more than eight times the number of participants as the most recent published study about lithium and ALS. Stay tuned as this exciting and unprecedented study continues. As always, thanks to everyone – whether involved in the study or not – for sharing your treatment data. You made this study possible, and we intend for it to be the first of many across our communities. The age of patient-led research is here!
Finally, we are thrilled to announce the March 23rd launch of our beta community for Mood Conditions, which coincided with the New York Times Magazine article, Practicing Patients. If you know anyone affected by Mood Conditions such as depression, bipolar disorder, obsessive compulsive disorder (OCD) or anxiety, please invite him or her to join PatientsLikeMe today.
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.
4 Comments 
Epilepsy, Fibromyalgia, Mood Conditions, Openness, Parkinson's Disease, Share and Compare 
Permalink
