What kinds of things do we cover in our monthly newsletters for members?Take a look at the excerpt below from our August edition.Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive.See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today.
MONTHLY MUSINGS
Ever reviewed a product on Amazon?Or rated a restaurant on Yelp?If so, then you know your experiences matter – and that they can help someone else make the right decision.
It’s the very reason there are “treatment evaluations” at PatientsLikeMe.There are so many difficult choices when it comes to treatment.Many of you talk about weighing the benefits and risks when starting, stopping or changing treatments.Oftentimes, this is something you have to revisit repeatedly throughout your journey.
Whether your treatment is working wonders or has no noticeable effects, your treatment evaluation can help so many others like you make up their mind. Got something you’d like to share about your past or present treatments?
Thanks for your awesome feedback as we continue to improve our site.In this section, we’ll keep you up-to-date on new features designed to make your PatientsLikeMe experience even better.Here are our top functionality enhancements for August.
SYMPTOMS, SIDE EFFECTS AND THEIR CAUSES
We’re excited to share some big changes to the way you record symptoms and side effects – all based on your feedback.You told us you wanted to better see the connections between items on your profile. For example, sometimes a symptom may be a side effect of a treatment, or the cause of another symptom, but we didn’t have a good way to show that. Now we do, and we think it’ll allow you to share even more insights.
Check out this screencast for a visual tour of these important changes.
REASONS FOR TREATMENTS AND HOSPITALIZATIONS
In a related change, we’ve made it easier to add the purpose for a treatment or the reason for a hospitalization.Just like adding the cause of a side effect or symptom, you can now add the “why” part of the story without leaving your profile page.Simply click the “plus symbol” icon next to a treatment or hospitalization listed on your profile and type in your answer in the pop-up window.Done!
What kinds of things do we cover in our monthly newsletters for members?Take a look at the excerpt below from our June edition.Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive.See what we’ve been up to over the last few rather eventful months, and if you are member who’s not opted in to the newsletter, sign up today.
MONTHLY MUSINGS
How do you find a clinical trial that’s right for you?
There are currently more than 30,000 actively recruiting clinical trials in the US.How do you stay on top of which ones you might be A) interested in, B) eligible for and C) within driving distance of?
It sounds like a tall order, but thanks to our new clinical trial search feature, it’s not.Now, you can search real-time listings on our Clinical Trials page (which pulls directly from ClinicalTrials.gov) and bookmark any trials of interest.Beyond parameters such as disease, age, gender and zip code, our search filters allow you to customize your search by keyword, trial phase, type of intervention and the distance to the nearest trial site.
Too busy to do regular searches?No problem.We have added a new link on your profile that shows the number of actively recruiting trials you may be eligible for based on your profile data.That way, you’ll get a heads up any time you log on to your profile.Simply click through to see what they are, who else at PatientsLikeMe may be eligible, where the study locations are (in helpful map form) and how to enroll.
Sounds easy, doesn’t it?We thought that’s how it should be, which is why we’ve been working hard to make this feature to available to you.Turns out others think it’s a pretty great idea too.We were recently honored with the “Best in Show” award at the 2nd Annual Health Data Initiative Forum for this innovative service.
THIS MONTH’S SITE IMPROVEMENTS
We are constantly working to improve our site.In this section, we’ll keep you up-to-date on new tools and features designed to make your PatientsLikeMe experience even better.
Ever wonder if any new patients like you have joined the site?Now you can be alerted by email when there are new results to a saved patient search. Simply click the alert button (the bell icon) next to your saved search to receive notifications.
For instance, want to know when a new patient taking a particular treatment joins?Easy.Create a saved search for that treatment and click the alert button.
The best way to see how your treatments, symptoms and conditions are affecting your overall health is to keep your profile up-to-date.Sign up today to receive reminder emails that make it quick and easy to keep your profile current.If you already receive these notifications, you’ll see we’ve updated them a bit.
In the spirit of the New Year, here are some highlights from our recent newsletter. Read what patients like you have to say about what they’re most interested in learning from other patients this year.
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(Amy)What are you most interested in learning from other patients this year?
(bradley25 - Mood Conditions Community)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.
(mrskidneysurvivor - Transplants Community)There is not any one thing that I can say I am most interested in learning from other patients like me because I gain knowledge and insight from all patients who have had a transplant or who are waiting for one. We all have experienced or are still experiencing similar situations and take similar medications and cope with our day-to-day health, and I learn from that.
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.
(prelado - Parkinson’s Disease Community)Of course, how they’re doing with their medicine, mainly if it is the same as mine.
(irishtxn - HIV Community)How to keep unwanted stress out of my life! It’s hard enough being one of six siblings living in the same town, much less [being the one living] with our mother. I’m not getting any real support from them as I’d like.
My siblings do take care of my mother’s prescription costs, but they rarely offer to come in and get my mother out for while. I might rephrase that [it would be nice] to ask her to their homes. She rarely ventures away from the house unless it has something to do with the church. Never gets to see the other children unless it is a holiday such as Christmas.
(slicky - ALS Community)I am like any other patient. I have not experienced everything. There is always something new to learn, and I think the best way to learn is to ask other patients on this site. The doctors can tell you what they know from reading books or other doctors, but getting knowledge from patients firsthand is the best way to learn how to cope or [determine] the best equipment to use, or the best treatments.
I am not saying every comment on PatientsLikeMe is right, but most of the information you get on this site really is valuable to all patients and their caregivers. The best thing is you can choose to try it for yourself or ignore it. It really is amazing to see all these patients come together to help one another. There is no stupid question. If you want to know, just ask and you will get a response.
And the best thing is it is from people all over the world, so some countries may have different studies or trials or meds we do not have here in the U.S. I have talked to people all over the world who have asked me how I have had ALS so long and what do I do to keep going. I tell them my regimen. I also tell them I can only tell them what seems to work for me, as most everyone knows ALS affects each of us differently, so what works for one person may not work for another.
(sunnyt - Fibromyalgia/CFS Community)When I discovered PatientsLikeMe it was a God-send! It was so good to know I was not alone in this. Most people do not believe what we go through. It is so hard to explain the pain and tiredness of this. I know, I was once one of the doubters.
This year I would very much like to learn how other deal with this, for one. And what treatments others use also, more alternative treatments. The list goes on…like how to cope everyday with not knowing how you are going to feel, where you will hurt or how tired you will be.
I am sure of one thing, I will probably find other answers to questions I did not even know I had! I can not thank PatientsLikeMe enough for the support and information I have gotten in the past year.
I don’t really know what I plan on learning this year. I really haven’t given it a lot of thought since I am so busy at home with family and work, and now I am going back to school part-time. I know everyone is just trying to get back to normal after the holidays. But I live in a family where nothing ever slows down. Believe me, you want it to, but it won’t. I do learn more about seizures (epilepsy) each year.
(Sapphyr - MS Community)As usual, tips for living with a disability that have actually worked.
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!
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(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.
We continue our series this week of getting to you the person, not just the “patient.” Today’s interview is with “iceberg,” a member of our PatientsLikeMe ALS Community and another 2010 newsletter interviewee. Read on to learn more about what keeps him motivated, how his condition has affected his work life and how he took part in the PatientsLikeMeInMotionTM program. Enjoy!
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(Amy) What keeps you motivated?
(iceberg)
I have always been self-motivated. I have been running since my high school days, running cross country and track in high school. I started to run again in 1978 and even ran a marathon in 1990 when I was 40. I continued to run until 1995 when my foot drop became so severe I began to trip myself.
My wife says I am just too bullheaded to give in to ALS. I think watching my grandson grow up is my motivation too. In 1998 when he was born, I didn’t know if I would see his first birthday. He is now 11.
(Amy)Who do you admire and why?
(iceberg)This is a hard question to answer. I admire anyone who has ALS and continues to battle to live. When I travel to Washington, D.C., for Advocacy Days and see PALS in wheel chairs with breathing tubes and feeding tubes and see how they are fighting to live, it makes me admire them. “Never Give Up.”
(Amy) How has your condition affected your work life?
(iceberg)I was a Toll Collector on the Pennsylvania Turnpike until August 23, 2009, and I am now on disability retirement. I have gradually lost the use of my thumbs over the last several years. I was no longer able to keep up with wrapping coins and counting change back to the customers. So I guess you would say it has affected my work life quite a bit.
(Amy) What’s your favorite aspect of PatientsLikeMe?
(iceberg) PatientsLikeMe has afforded me an opportunity to meet a lot of people with ALS who I have become friends with over the past several years. Some of the people that I have talked with on PatientsLikeMe I had the pleasure of meeting in D.C. over the past several years. PatientsLikeMe also supported our walk team this past summer for Walk to Defeat ALS. [See photo on left] My thanks to PatientsLikeMe for the ability to make new friends and talk about how ALS has affected our lives.
(Amy) No, thank you for being so willing to help others learn from your experiences with ALS, iceberg!
As you know, we like to just check in with our members to see how you’re doing as a person, not just a patient. This week on the blog, we’re highlighting some interviews to help you get to know some of the people here just like you. Here’s an interview with member “angela_b,” a member of our PatientsLikeMe Parkinson’s Community who was interviewed for one of newsletters last year. Read on to learn more about what puts a spring in her step, how she copes with her Parkinson’s, and what’s she’s learning from other patients. Enjoy!
* * *
(Amy) What puts a spring in your step?
(angela_b)
That would have to be my new love for crafting. I didn’t realize how many ideas I had hiding away in my head until just recently. Now, you cannot even mention a shower or party, and I’ll start planning what favors to give.
(Amy)How do you like to spend holiday weekends?
(angela_b)
I am a hostess by nature - that I get from my momma - so I love to have picnics/parties at the house. Plus it’s easier for me to give the party than to go to one. I have four kids, ages 11, 8, 3, and 1, so you never know what the moods will be!
(Amy) What is helping you to cope with your condition?
(angela_b)
I have a humongous support system. My family, friends. It’s pretty awesome. Plus, my husband and I just started our own non-profit (Running for Parkinson’s) to raise money and help fund Parkinson’s related issues within our community. We run (he runs, I try very hard to…LOL) and this helps keep me motivated!
(Amy) What have you learned recently at PatientsLikeMe?
(angela_b)
I’ve learned a lot from lurking. I’ve found many answers, like my cramping when I run is dystonia, and a lot of people have the same sleep issues. I’ve found that we all have a lot of “non-parky” things in common, such as career choices, crafting, running.
We are all in this fight together. It’s great to know that I am not alone in this, but surrounded by great, loving, caring people.
Posted by Lori Piscatelli Scanlon | January 7, 2011
With every new member at PatientsLikeMe, there is more data generated for research, more dialogue about individual experiences, and a more expansive support network. Additionally, with more patients we can become the world’s largest and loudest representative of the patient voice. To that end, our job in marketing is to share your stories and tell the world about our community to bring in more patients.
Here are highlights of some of the work we did this year to promote your voice and attract the 32,000+ new members we welcomed to the community in 2010. (Enjoy the video recap below as well.)
Social Outreach
With a full year under its belt, 2010 was a big year for the PatientsLikeMeInMotionTM program. With slick new t-shirts and a new sign-up form, the program just about doubled in size from 38 teams in 2009 to 60 teams in 2010. More than 1,000 people were rocking PatientsLikeMe t-shirts for their disease awareness walks this year and the company donated $14,800+ in our members’ names to almost 50 nonprofit organizations. (More about our nonprofit partnerships and work we’ve done with them is coming from Molly Cotter next week). Finally, we launched our PatientsLikeMeinMotionTM Flickr page, which features hundreds of photos of all of you walking for team PatientsLikeMe.
In January 2010, PatientsLikeMe launched its first ever podcast called PatientsLikeMeOnCallTM (hosted by our newest marketing team member, Aaron Fleishman). Through a series of podcasts this year, PatientsLikeMe provided insight from our thought leaders on topics most important to you, spotlighted work with partners and gave patients a place for their real voices to be heard. With more than 1,000 subscribers to date, PatientsLikeMeOnCallTM is ready to bring more content to all of our listeners in 2011. Thanks for stopping by and listening!
Along with PatientsLikeMeOnCallTM, PatientsLikeMe continued to spotlight what you’re saying, learning and sharing through our blog (yes, we do manage the content for this lovely page!), Twitter, Facebook, YouTube and more. Our Twitter followers continue to grow with more than 2,100 followers. Our Facebook page now has more than 1,000 fans and our YouTube videos have a combined number of 74,258 views total, with 35,469 views this year alone.
Events, Direct Mail and Newsletters
In addition to attending some events (e.g., 2010 Transplant Games, Parkinson’s Unity Walk) to talk directly to patients, PatientsLikeMe also reached out to medical centers (e.g., epilepsy and transplants) to inform physicians about how patients are benefiting from being members of PatientsLikeMe (see above).
Finally, we’re thrilled to hear how much you enjoyed the monthly community newsletters in 2010. Altogether, we published 90 newsletters this year and featured many of your fellow community members in patient interviews (which also appeared here on the blog). Based on your feedback, we also finally launched an archive section on our site so you can catch up on all the latest and greatest from PatientsLikeMe.
Spreading the word is what we do in marketing, and we can say it is has truly been a pleasure telling the world about all that you do and all that you share through PatientsLikeMe. 2011 will only be better. Thank you and Happy New Year!
Thanks everyone for a great 2010. As we kick off the New Year, PatientsLikeMe would like to take a quick look back at the road we’ve traveled together this year. We think of all these improvements as laying the groundwork for even more exciting changes to come in 2011.
At the start of 2010, we set out to tackle two very important goals that could help you, our members, get the best possible experience out of PatientsLikeMe: 1) unify the way we collect medical information and 2) give more information back to you so you can see how you fit in and compare your experiences with others. Kate Brigham recently talked about some of the improvements we’ve made on the second goal in her Share and Compare post, but I’d like to share a bit more about the first goal.
Our communities have a lot in common despite their different conditions and health concerns. As Tommy Maker said in a recent newsletter interview, “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.”
“We are all in this together” is the sentiment we hear from you time and time again. In that spirit, we made a lot of changes to unify your experiences across all our communities. Many of these improvements started in one community where some of you tried functionality and gave us good feedback so we could improve things and share them with all patients. With the rollout of every product development below, you can now better share and compare your experiences.
Here are some examples of ways our communities have helped each other learn and grow in 2010:
Flash charts: We piloted these in the ALS community last January and received a lot of great feedback. Since that successful pilot, we converted the profile charts in all our communities to these more flexible and easier to understand charts. This change also enabled future enhancements, like re-organizing your profile and better Doctor Visit Sheets.
Condition History: While many of the questions you answer on PatientsLikeMe are very specific to your medical condition, there are a lot of questions that apply to any and all patients. When did your symptoms start? Do you have a diagnosis? Are you taking any treatments? Now members across communities answer many of the same questions in the condition history so everyone can share and see how their answers compare with the rest of the community.
InstantMe: This idea of asking you a quick question about how you are doing started out as InstantMood, and was available only to members of the mood community. They gave us great feedback and helped us to improve it (especially adding a “neutral” answer choice) before we rolled it out to patients in all our communities in November. It’s now called InstantMe.
Quality Of Life: The quality of life survey we just made available to all members at the end of December was piloted in the HIV and Organ Transplants communities. By having a way to measure your social, mental and physical well-being, now you can gain a better understanding of how your condition affects you - the whole you.
Thank you to all the members of our community who continue to share and learn along with us. Watch this year in review video to see how you all have contributed to making the patient experience on PatientsLikeMe one of a kind.
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 17, 2010
This week’s “Treat Us Right” theme focused a lot on the sentiments and data you share every day to help others learn more about your real-world experiences. We, at PatientsLikeMe, also like to just check in to see how you’re doing as a person, not just a patient. Here’s an interview with member “jesus reigns,” a member of our PatientsLikeMe Fibromyalgia Community who was interviewed for last month’s newsletter. Read on to learn more about what puts a smile on her, her attitude on life, her favorite holiday traditions and more. Enjoy!
* * *
(Amy) What puts a smile on your face?
(jesus reigns) My children, my church family and the holidays. Christmas is my favorite holiday, so I get to enjoy all of those things at the same time. I am very sentimental, so it doesn’t take much for me to get emotional.
(Amy) How would you describe your attitude on life?
(jesus reigns) My attitude on life has changed quite a bit since I became ill with fibromyalgia. I used to think that everything had to be done each day, just so. I was a master in multi-tasking and could get by on six hours of sleep a night. I would take on more and more tasks outside of the home, church assignments, school activities and so on. My day was always full of things to do, and not enough time in which to do them. I used to feel guilty when I couldn’t fulfill all of my obligations to everyone, and try that much harder to please everyone.
Now, my attitude is that life is meant to be enjoyed, not worked through. I have learned to delegate tasks around the house to my children, instead of trying to do it all myself. I cut down on my outside activities drastically, even having to drop out of our choir in church for a while. I am still learning how to pace myself, and to understand that being ill is not my fault.
In knowing this, I am past feeling guilty about the things I can’t control. Because God is my priority, my trust and help lie in Him, so I am taking life as it comes, while my faith is in Him.
(Amy) What is your favorite holiday tradition and why?
(jesus reigns) Christmas is on the top of my list. My favorite holiday tradition is my family and I going to our candlelight services at midnight at our church on Christmas morning. We usher in Christmas by singing Christmas songs and lighting candles in a circle around our church, each member holding a candle. It is our way of putting Christ first for the day, and acknowledging that this is our first priority. It gives us a sense of togetherness, love and unity.
(Amy) What features of PatientsLikeMe do you use most?
(jesus reigns)I use the update pages the most. It is very handy, because I can keep track of my symptoms whenever I want to. I also like the way that I can use this to print off [my updated history] for my doctor’s appointment.
It’s ALS Awareness Month! Did you know there are more than 4,500 patients with ALS (PALS) in PatientsLikeMe’s flagship community? We’ll be updating you all month on what is being learned by and from our PALS, so stay tuned. To kick us off, here is an interview with one of our long-time, three-star members - DannyD. Read on to find out what he recently told our very own Amy Morton about living with hope, making resolutions, being impulsive, and learning from PatientsLikeMe.
* * *
(Amy) What gives you hope?
(DannyD) People give me hope. I know there is an army of people and organizations out there working to cure ALS while continually finding ways to maintain quality of life until there is a cure. Even in these tough economic times, people are still giving of themselves, whether it is their time and/or money. I think in the last 10 years we’ve made more progress into understanding ALS than we’ve made in the previous 100+ years, and as my disease process is progressing very slowly, I’m optimistic that I will see a cure in my lifetime.
(Amy) What are your resolutions for 2010?
(DannyD) I don’t usually make resolutions, because I think you can set yourself up for failure. But I do strive to be a better person, by being more patient, understanding and tolerant, which is most challenging for me. Historically, I think I’ve accomplished that but only in baby steps. I do try to learn something new every day and teach something to someone, and I will continue to do that in 2010.
(Amy) What’s the most impulsive thing you’ve ever done?
(DannyD) I’m generally not very impulsive, so I would have to say in 1990 when I was living in New York and just prior to getting married. I went to work on Friday for a 3-11 shift as a paramedic and was greeted by three of my closest friends, who hijacked me away to begin what would be a two-and-a-half-day bachelor party. They shackled an eight-pound bowling ball to my ankle for the entire weekend. They had made arrangements to have my shift covered, took me to dinner and then back to the volunteer firehouse for a huge party. The next morning we got on a chartered bus for a day in Atlantic City and gambling at the casinos on the boardwalk. It was a heck of a weekend.
(Amy) What would you like to learn from PatientsLikeMe and its members this year?
(DannyD) I started as a beta tester here and have watched it grow into the largest online community of patients helping patients. With all the restrictions put in place by the HIPAA laws, this website has transcended the status quo and become a great tool in helping patients fight this disease and several others. Truth be told, for purely selfish reasons, I would like to learn this website is no longer necessary for the ALS community because the cure is here!
(Amy) A beta tester? Wow. Well, thank you for sharing with us today and every day since you joined, DannyD!
Posted by David S. Williams III | November 26, 2007
At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview one patient each month to find out more about how he or she approaches life. This month we are pleased to feature FeliciOlivar, a two-star member.
1. What are you thankful for?
I am thankful for being able to walk. That was my worst flare of them all. I woke up one morning and fell right down to the floor. As devastated as I was that my worst fear had come to be, I didn’t let anyone know that I was petrified at not being able to walk or do anything for myself. It was a horrible time for me, but I was determined that I was going to be able to walk again. I’m glad that I can walk even if I do still trip over my own feet. I’m also thankful for the family that stood behind me through that tough time.
2. What do you have in abundance in your life?
I have laughter. If you cannot laugh at yourself, then what are you going to do? I laugh at myself all the time, if I don’t I’ll cry over nothing. The stumbles, the forgetfulness and the anger at my body turning on me after I gave it the best cookie dough in the world, this is the thanks I get. See, you have got to laugh at stuff like a fork flying out of your hand at the most elegant restaurant and running out before the food fight starts. It’s the best medicine.
3. Describe a typical Thanksgiving in your family.
We usually travel home and visit everyone, but this year we aren’t able to do that due to certain problems that have arose (i.e. gas, car repairs), so we will have to have Thanksgiving right here at home (scary since I’m cooking). The highlight is usually seeing my son eat a turkey drumstick. We take a picture every year. I hope he’ll be able to eat one this year without an ambulance ride.
4. What are your interests and hobbies?
I truly, simply enjoy nature. I love watching birds and seeing the pretty ones. Until I lived in a rural place, I had rarely seen all the birds that I’ve seen in the past year. I also like photography. I haven’t gotten a real good grasp on it, but I usually take pictures of the birds that I’m spying on. This would go hand and hand with scrapbooking that I love so much. I don’t do it much now because it’s an expensive hobby. I would like to learn to do needle work like needle point, knitting and crocheting. I like to keep busy.
5. What accomplishments are you most proud of?
I’m most proud of just being a mother. It’s hard when I have bad days, but my son knows why I don’t feel well. This past month hasn’t been good for me going through Optic Neuritis. Having one eye is not easy.
6. What are your top three motivators in life and why?
Prayer, my family and friends (count as one) and the online group that I belong to, The Urban Multiple Sclerosis Alliance. Prayer helps keep me sane. I can’t make it without prayer. My family and friends are there for me no matter what, even though at times I just want to be alone. And the group, well they understand everything I’m going through. It’s a blessing to have someone around and not have to explain what “Coggies” are (cognitive problems). Don’t you just love that nickname?
7. Which PatientsLikeMe patients have you enjoyed getting to know?
I haven’t been posting here a lot so I hadn’t got to know anyone yet, but looking at the message boards, I love seeing someone post about something that I thought only I had to deal with. It’s a great comfort to know that you are not the only one who is not in control of your body or who can’t remember anything about the previous day. It’s great that there is always a place you can go where people just like you (or at least similar to you) exist.
Posted by David S. Williams III | November 15, 2007
At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview one patient each month to find out more about how he or she approaches life. This month we are pleased to feature Lynette1400, a two-star member.
What are you thankful for?
A loving husband and family, wonderful friends, having had an interesting and exciting life, Social Security, Medicare, and pensions!
What do you have an abundance in your life?
A) Love and laughter.
B) Time to do all the things I want to do but didn’t have time for when I worked. Because of this, I am busier than ever.
What is your favorite holiday memory?
There have been so many. When my three children were little, we spent Christmas Day at my mother’s. After dinner, she played the piano and my Dad and the whole family, including my three brother’s families, stood around the piano and sang Christmas carols while the children played with their new toys.
It was like the Christmases in our family when I was a child. After the kitchen was cleaned up, the families would all sit around card tables and play card games. The grown-ups would patiently teach us children how to play. Then after that we would have a supper of turkey sandwiches and leftovers. Then on the long drive home we four children would all fall asleep
Describe a typical Thanksgiving in your family.
We have a traditional Thanksgiving dinner with all the fixings, which is planned for about 4 p.m., but we usually get to sit down by 5 or 6 pm. Present are my husband, me, my son and his wife, my daughter and a friend, my brother-in-law and a neighbor of his. I try to include those who do not have other plans for the day or those without family here. Everyone brings something.
It is a lovely and very tiring day for me. This year my son and daughter-in-law are having the celebration at their home, and in addition to the above guests, her parents, a girlfriend and her daughter and her brother will be there. She sets up a badminton net and the younger ones participate. She is a very good cook. I bring two pumpkin pies and probably two chocolate pecan pies.
Posted by David S. Williams III | September 15, 2007
At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview one member each month to find out more about how he or she approaches life. This month we are pleased to feature chethk, a two-star member.
Where do you find joy?
I find joy by being with my family, friends, co-workers, and customers; participating in life’s daily adventures and challenges; and giving 110% effort with every task I undertake everyday.
What person do you admire most?
My wife Kate for being the mother of my two children and putting up with me.
How have you evolved since your diagnosis?
I have had Parkinson’s for 14 years. It started as a nuisance, it is now a disability. I don’t believe a person evolves when facing a progressive disease; rather, a person either resolves to fight it everyday or give in to the symptoms and wither away. I have made the choice to find a way to overcome the ever-changing symptoms of Parkinson’s everyday.
What have you learned from PatientsLikeMe?
I have learned there are others with PD who have the same emotions, fears, anger, and resolve to fight this disease until a cure is found. We do not want others to feel sorry that we have Parkinson’s, but we do appreciate their acceptance of our outward symptoms and everyone’s financial donations to medical research that will lead to a cure.
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.
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