Say ‘hello’ to Monica. Some of you may know her on PatientsLikeMe as msajstall. She was diagnosed with multiple sclerosis (MS) back in 2005 and has been a member of the PatientsLikeMe community for 6 years now. She recently took some time to talk with us about her diagnosis, finding the right healthcare coverage and the importance of connecting with others.

When were you diagnosed with MS and what changes did you have to make in your daily life?
I was diagnosed in January 2005 after numerous complaints about not being able to feel my legs. I noticed the sensation changes primarily when I walked up stairs. I also noticed that I had lost sensation when I used the bathroom. That particularly scared me, so I went to the hospital and stayed there for 5 days. That’s when the doctors came in and gave me the diagnosis.

I was actually very scared of the diagnosis and I didn’t know much about MS at the time. The doctor did tell me that I would be in the hospital about 5 days more before he would discharge me. At that time, I was not working but I was searching for employment. After finding out, I researched MS along with continuing my job search. After discharge, I noticed how much information was available online dealing with MS and it overtook my job searching.

After you decided to stop working, what challenges did you face continuing your healthcare coverage?
I did not decide to stop working until 2 years after the diagnosis. I decided to get approved for disability through the Social Security Administration prior to leaving the workforce. My neurologist was my number one advocate. Once I applied and the process started, I got approved in 82 days. To me, that seemed like confirmation that I made the right decision. Although I didn’t have long to wait to be approved, it did not make it better for me to accept that Medicare would be my healthcare coverage from age 35 on out. The system was not created to care for 35 year olds and I knew there would be challenges. And boy was that a TRUE thought.

How has an online community like PatientsLikeMe helped you along the way?
PatientsLikeMe has helped me tremendously. When I was diagnosed, the MS community was much smaller than it is today. The forums always seem to really help me. If I have a question, it most likely has already been asked on PatientsLikeMe. I can truly say when I decided to change my disease-modifying drug, there was a whole forum talking about the drug and it really convinced me.

What is one thing you think every MS patients should know?
MS patients must realize that they are not in this fight alone. Besides predominate non-profit organizations dedicated to MS (National Multiple Sclerosis Society, Multiple Sclerosis Foundation, and Multiple Sclerosis Association) there are so many self-help groups that help with things. PatientsLikeMe gives us a voice that can help us to face our problems. PatientsLikeMe makes us feel that we are being heard. I truly appreciate the moderators of the forums and PatientsLikeMe as a whole.

Can facing your fears help you come to terms with them?

That’s the idea behind a recent discussion in our multiple sclerosis (MS) forum, in which one member asked, “What part of MS are you most afraid of?”  The answers poured in from dozens of MS members who found it cathartic to reveal their true fears.  In some cases, these heavy concerns are things that members have not felt comfortable sharing with family or friends.  For example, some stated that they are most scared of “relying on others” or “becoming a burden.”  For others, it’s “not recognizing myself” or “having no quality of life.”

Check out some of the other answers in the word cloud below.

Are there fears about your illness that you haven’t shared?   Find solace and solidarity by talking to other patients like you today.  You may find that bringing your fears out into the light makes them seem smaller.  Or you may learn that many others are dealing with the exact same worries.  Discover the benefits of “letting it out in the open” amongst a supportive community who can truly relate.

“The benefit of sharing on PatientsLikeMe is the support.  For me, it doesn’t matter what I’m going through, there are people there that understand.  They’re not judgmental.  They get it.  They’re there too.  I get lots of emotional moral support.”

– Multiple Sclerosis Patient Marcia

Back in June, we shared with you a video interview with PatientsLikeMe member Lissa that was conducted by our partner Patient Power.  Today, we’re pleased to present a second Patient Power interview with another member, Marcia Hirst.  A wife and mother of 11 children, Marcia, 52, has been living with multiple sclerosis (MS) since she was a young girl – although she didn’t know it at the time.

Check out her moving interview below to find out about the lifelong adjustments she’s made due to MS and learn why “the puzzle pieces are coming together” now that she’s discovered a community of 28,000+ MS patients at PatientsLikeMe.

Marcia Hirst: Don’t Let Multiple Sclerosis Take The Joy Out of Your Life from Patient Power® on Vimeo.

Enjoying these Patient Power interviews?  Stay tuned for others as the series continues.

In Part I of our interview, we learned how Dee came to write The Dumbest Things Smart People Say to Folks with MS, how PatientsLikeMe’s MS Community was a critical part of her research and, most importantly, her “top three dumbest things” not to say.

Today we find out more about Dee’s personal journey with multiple sclerosis (MS) as well as what it’s like to be a life coach to MS patients.  Don’t miss this insightful interview with an MS patient who has focused her life around other MS patients.

You’re a life coach with a specialty in MS patients.  Tell us what kind of obstacles you see your MS clients facing – and ultimately overcoming.

I’ve always found it comforting, as do my clients, to know that we face similar obstacles. Since there are a lot of similarities I’ve developed a three-stage program to give us the structure we need to overcome the obstacles and live our best lives with MS: Regroup, Realign and Reinvent.

First, we’ve got to regroup. Consider Laurie. After her diagnosis there was so much happening: her grief, her family’s grief, recovering from optic neuritis and the steroids, learning how to give herself injections, deciding who she should and shouldn’t inform about her illness, trying different medications for different symptoms, dealing with the Dumb Things people said to her.

For Laurie, for most of us, this was a traumatic, overwhelming time. We dedicated an entire coaching session to regrouping. In other words, understanding every new obstacle in her life and creating a plan to take care of it. It wasn’t easy, but I’d been through it too, so Laurie knew she could depend on me to see her through. For my clients it’s a kind of “getting your feet back on the ground” stage, where I teach them how to move out of “overwhelm” to a sense of control. It’s a skill they can use for the rest of their lives.

In the first stage we’ve made a conscious effort to understand what living with MS means for us. In the second stage we realign to our new reality. The sooner, the better. When your car starts pulling or drifting away from a straight line, you know it’s out of alignment. When we begin learning to living with MS, we’re out of alignment. Without realizing it our minds drift to the dreams and the expectations we’ve always had. We’ve got to realign the way we look at the world, to let go of all our dreams and expectations in order to clear a space for stage three.

For Dave this was particularly challenging. Like Dave, often my client’s “story” has blocked his or her ability to realign. When Dave and I began coaching he focused on how this was “not where I’m supposed to be at 40 years old.” He focused on all the terrible things his ex-wife had done to him since the diagnosis, on all his mistakes, on everything that had already happened. He needed to realign. Simply put: don’t look back. I guide my clients to make a seismic shift by taking power away from their past.

When my clients have regrouped, they understand their disease and what needs to be done. When they realign, they let go of the past. In the process of realigning they learn that the quicker they let go of yesterday, the faster they can reinvent their new lives with MS…and the faster I help them create their new dreams and plans for a great life. This is much more an opportunity than an obstacle. And there is one tool my clients either love or hate but either way they’re always amazed at how well it works. They start living by this rule: “Don’t complain.  Ask for what you want.”

What’s the most important lesson you’ve learned in your own MS journey?

That I had to change my definition of success. Before I was diagnosed, I had a rather cookie-cutter definition of success, with my plans lined up like a stack of dominoes. I’d get married, have kids, live in my dream house and be a strong, independent woman. I’d be a great wife, mother and professor. I’d entertain, have lots of friends, stay in great shape, play tennis. I had so many dominoes lined up that I could have tiled the kitchen floor.

And in slow motion, each domino crashed into the next. I’d get so tired that if I were starving and a plate of food was across the room I wouldn’t be able to get it. No energy meant no children, no travel, no job and no dinner parties. My herb garden shriveled. No more tennis because after a MS exacerbation I couldn’t see the ball. Stay in shape? I was so depressed I ate myself into stretch pants and [my husband] Scott’s t-shirts. Not such a great wife, family member, or any other role I’d envisioned. For a long time I just tried to stay sane and protect my energy level. It was not pretty.

I had to let go of my dreams and redefine success. Now it isn’t about the destination, it’s about the journey. I have had to become more like a pilot. While the flight plan is essential, the pilot has to continually monitor the weather, wind direction, wind speed, and make corrections along the way. Eighty percent of the time it’s about gauging the situation and making corrections. Success for someone like me who is living with MS, an unpredictable and debilitating disease, involves a lot of corrections to bring myself back on course. It’s been one heck of a flight to get here.

Continuing our observance of MS Awareness Week, we’d like to introduce you to longtime PatientsLikeMe member Dr. Dee Kite (“CoachDee”), who has been living with multiple sclerosis (MS) for over 23 years.

A life coach who specializes in MS patients, Dee became interested in social awareness, or how best to talk and interact with a patient with MS.  What kinds of comments are insensitive, for example?  And what is that MS patients would love to hear instead?  Find out about that and more in our two-part interview with the author of The Dumbest Things Smart People Say to Folks with MS.

What led you to write the book – and how did PatientsLikeMe play a role?

When I was diagnosed with MS in 1995, I lived with a feeling of panic and struggled just to survive. I remember the first advice I received. Trudy, a woman brimming with confidence and good cheer, told me, “You may not be able to do much about MS, but you can have a positive attitude.”

I felt so ashamed because no matter how hard I tried, my attitude was NOT positive. Physically I was pretty much okay, because being blind in one eye and feeling like I had the flu every afternoon were not going to kill me. Emotionally I was not okay. I didn’t know what would happen next, and I was scared. I’d sneak out of the bedroom at night so my brand new husband, Scott, wouldn’t hear me cry.

Looking back over the 17 years I’ve had to tell others I have MS, I realize they too probably felt sadness and fear. But instead of openly admitting this, most preferred to tell me what I should do to cure my disease or alleviate symptoms. Katy said I should ride horses because “Shelia” had been cured when she rode.  Another person urged me to rush out and be stung by bees.  A sure cure!

I continued to receive prescriptions for off-the-grid MS “cures” when what I really wanted was just simple conversation. I wondered what others living with MS were hearing. I thought if they were having similar experiences it might be a helpful topic to write about on my website, MyMSCoach.com. So I posted this question in the PatientsLikeMe MS forum:  “I’m trying to collect the worst things people have said to us so I can help educate them about what we really need to hear.  Has anyone said something to you that didn’t help or even made you feel worse?”

The floodgates opened, and PatientsLikeMe members responded (and continue to respond years later!). The thread generated such passionate responses I was amazed. Some things people had heard were so shocking I gasped. Others were so sad, I cried.

While I had just been thinking of an interesting topic for an article, the patients who were sick and tired of thoughtless comments saw an opportunity to be heard. One woman said, “You need to write a book about this!” Another patient said, “Yeah! 1,001 Things Not to Say to Us!” So it all began right here on PatientsLikeMe.

If you had to choose, what are the top three dumbest things you could say to someone with MS?

It’s hard to choose three, because there are so many dumb things! Here are three “classics” because most of us have heard them:

• You don’t look sick,
• _______ (insert name) died from MS
• _______ (insert person) has MS and is doing so much better than you.

Here’s another great example of a dumb thing.  Brenda parked in a handicapped space. A mother and her kids ran up to her shouting, “That is the most inconsiderate thing you can do! I have a handicapped husband!” Brenda turned and said, “I have MS.”  The woman practically growled. “There’s nothing wrong with you.”

Brenda just got back into her car and drove home. She didn’t know what to do. And she wondered, what does handicapped look like? With MS there is no way to know.  It can be so demoralizing to always be in pain and then to be continuously wounded emotionally by other people’s perceptions and projections. That’s what The Dumbest Things Smart People Say to Folks with MS is all about, how the lack of awareness can deeply hurt us. And a lot of times it’s somebody we love.

Read Part II of our interview with Dee.

We kicked off MS Awareness Month by sharing some key facts we’ve learned from our MS community (26,000+ members and counting).  Now, we are digging a bit deeper in honor of MS Awareness Week.  You’ve already heard about common MS symptoms as well as frequent topics in our MS forum.  But what it is really like to live with MS – and how does MS impact not just those diagnosed with the disease, but all of us?

The National Multiple Sclerosis Society (NMSS) has put together a video showing all of the ways MS impacts individuals, families and society.  For example, did you know that MS costs the US economy $28 billion each year?   Or the average MS patient $69,000 per year?  Another startling fact is that the average person with MS leaves the workforce 10 years after diagnosis.  (Most are diagnosed in their 20s and 30s).  Check out the video above to discover more about how MS impacts you, even if you don’t know anyone with the condition.

As for an accurate picture of life with MS, the best descriptions come from those who know best – MS patients.  In a recent discussion in our MS forum, patients asked each other what one word they think best sums up life with this chronic, often disabling disease of the central nervous system.  What were their responses?  Here is a word cloud illustrating 30+ answers submitted by our community.

Putting words together in a full portrait, below is a poem by friendinflare, a three-star MS member who has lived with MS for 10 years.  Not only does she depict some of the issues MS patients face, but she also speaks to the relief that comes from sharing your experiences with others like you.  (At PatientsLikeMe, you can share treatment and symptom data, status updates, private messages, forum discussions and much more.)

In early November, I discovered a website.
A place where MS’rs can talk about our plight.
Our symptoms are as varied as our usernames.
There are threads for information, advice and even games.
We have legs of jello, vision that’s blurred,
And limbs that tremble from damaged nerves.
We still remain hopeful – but no one’s been cured.
“Daily injections will help” our doctors have reassured.
Our fatigue gets so bad we are glued to our beds,
We have cognitive issues from lesions in our heads.
Most don’t understand us, we’re a breed of our own.
We talk everyday without picking up a phone.
Our computers are a lifeline to hope,
Letting us talk with MS’rs from all over the globe.
Even though fights can break out at lightning speed,
Members always support those in need.
Here’s to everyone at PatientsLikeMe.

Getting a clearer picture of MS?  Good – but there’s even more to come.  Stay tuned for our two-part interview with an MS patient who authored a book called “The Dumbest Things Smart People Say to Folks with MS.”

To close out this week’s blog series (“One for All”), we bring you an interview with another noted “welcomer” from our Fibromyalgia community.  Meet Babsie.  A member of the 19,000-member community, she has commented on hundreds of patient profiles to date (which is highlighted in a graphic on Jeff Cole’s earlier blog here).   Read on to hear what Babsie has to say about why she joined the Fibromyalgia welcome wagon and what keeps her going.

	(Liz) Yesterday, we heard from MS community member, Diamondlil58, about her experiences welcoming members.  Why did you start welcoming people to the Fibromyalgia community?
	(Babsie) Someone welcomed me, and it made me feel good.  I never saw them on the forum, so after a few months I was curious and seeing the new patients without any subscribers or comments I would subscribe and make a comment.
	(Liz) What type of responses do you get from people you welcome?
	(Babsie) Always favorable and kind.  Some prayed for me and others became friends outside of PatientsLikeMe.
	(Liz) Do you keep in touch with people you welcome?
	(Babsie) Yes, in the forum; it is easier so I encourage people to post there. I monitor the Patients Tab and if they update I respond. I can also look at my own subscribers anytime I wish to send them a Private Message.
	(Liz) What is one thing you’ve learned from looking at new member’s profiles?
	(Babsie) Invisible disease is no respector of persons, young and old, their economic status – does not matter.
	(Liz) Do you feel more engaged with the site and its members as a result of the Welcome Wagon?
	(Babsie) Yes, if I am feeling isolated I go and invite others to participate.
	(Liz) Thanks for all the connections you’ve made just by inviting others to participate, Babsie!

We’ve been learning about how connected our patients are this week in our blog series called “One for All.”  In the first two blogs by Jeff Cole, we read (and saw through cool graphics) how some of our members are initiating an unparalleled universe of dialogue.  Today, we sit down with one of those members, Diamondlil58.   A true “diamond” in the MS community, she has left more than 16,000 comments to  welcome other members and get conversation started. Here’s our interview with one of the founders of our PatientsLikeMe “Welcome Wagon,” Diamondlil58.

	(Liz) How and why did you start welcoming people?
	(Diamondlil58) I was welcomed to PatentsLikeMe by two lovely ladies – JHCamero and Greeneyes.  Their messages made me feel welcome. I wanted to give back to the MS Community.  I didn’t feel that I knew enough about the disease and the effects it had on others to offer advise in the forum.  But, greeting people is something that I felt comfortable doing.
	(Liz) What type of responses do you get from people you welcome?
	(Diamondlil58) I have received many nice replies from new patients.  Some tell me their experiences,  others ask questions or request help setting up their profile page.  Some want to know my view on therapies and treatments.  I continue to welcome because it has been rewarding to me.  I understand first hand how scary the MS diagnosis can be; how friends and family can’t possibly understand what it’s like to feel the way we do; how we can be perceived as lazy; or the fear of parking in a handicap parking spot and hoping no one verbally attacks us.  Welcoming give others an opportunity to view a profile and helps them see what they can do with theirs.
	(Liz) Do you keep in touch with people you welcome?
	(Diamondlil58) I do keep in touch with so many people that I have welcomed through this site.  Some through Facebook, others in email.  I’ve even met several in the past year or so.  I have built some wonderful friendships here and make more everyday.
	(Liz) What is one thing you’ve learned from looking at new member’s profiles?
	(Diamondlil58) That we have all different backgrounds.  That we are not all the same but we all share one thing in common and that gives us something to build on to support each other.
	(Liz) Do you feel more engaged with the site and its members as a result of the Welcome Wagon?
	(Diamondlil58) Absolutely!  I wouldn’t do it if it was negative or wasn’t rewarding.  It’s my way of giving back to the MS Community.  I have a great appreciation for the founders of this site, the staff, and the caregivers that join us.  This site has been therapeutic for me in more ways than one, and I am so grateful that I came across it three years ago surfing the internet looking for information on my symptoms.
	(Liz) We’re glad you did too.  Thanks so much for keeping the wagon rolling, Diamondlil58.  You’re an inspiration.

In yesterday’s post, we looked at some of the ways members of the PatientsLikeMe community are connecting with other patients and the value they are getting from it.  Today, we’ll highlight how one person can make an enormous difference and inspire you with her ability to connect with others.

One method of reaching out to another member on PatientsLikeMe is by leaving a comment on their profile page.  Often, you exchange comments to inquire about specific data on someone’s profile or to thank them for sharing.  However, one of the most common uses of the comments functionality is for existing members to welcome new members to the community.  This is has been affectionately coined the “Welcome Wagon,” and it is most prominent in our MS community.  Today, more than 71% of members in that community get a comment within the first 2 days.  Receiving a comment from a veteran PatientsLikeMe member when you first join the site is a great way to “welcome” you aboard and make you feel a part of the community.

A large part of the effectiveness of the MS Welcome Wagon can be attributed to a member named Diamondlil58.  Of the 150,000 comments that have been left on PatientsLikeMe, Diamondlil58 has left a staggering 16,000 of them, addressed to over 15,000 different members.  The graph above shows just how extensively Diamondlil58 has connected with the community through commenting.  In the graph, the dots represents patients in our MS community, and the lines represent a comment between them.  Diamondlil58 is the large green dot near the center.  Notice how she has touched both the inter-connected network of patients (on the right), as well as sent out a huge number of comments to others who aren’t yet as well-connected (the moon-like diagram on the left).  A large portion of these comments were part of the Welcome Wagon.

While the Welcome Wagon was started in the MS community, it has definitely caught on in other communities.  Here is a look at how Babsie, an active member in our Fibromyalgia community, has reached out to welcome new members.  Like Diamondlil38, Babsie has helped create a network of dialogue and connection between patients like you.

It’s inspiring to see how one person can touch so many.  Members often tell us how beneficial it is to have a way to find “patients like me.”  (In fact, we cited a few examples yesterday from our research study that shows just how valuable that can be to one’s health).  However, that “find” functionality alone is not what makes this community what it is today.  It’s the people who are using it.  It’s the people who are willing to openly share with one another; the people who reach out to make those connections (sometimes initiated by beacons, like Diamondlil58); it’s people like you who make the most of being a member of PatientsLikeMe.

The next two blogs in this series will include interviews with Diamondlil58 and Babsie.  Stay tuned as we climb aboard the Welcome Wagon and hear what they have to say.

Our research team here at PatientsLikeMe carries out world-class research in collaboration with academic centers, commercial partners (see “how we make money“), and to help answer questions from our patients. We share our findings with the world through this blog, peer-reviewed publications, and by attending academic conferences like the Consortium of Multiple Sclerosis Centers (CMSC) annual conference. This meeting, now in its 24th year, is for neurologists, nurses, researchers, and other healthcare professionals involved in MS to share their knowledge, network, and form new research collaborations.

In collaboration with our partners at Novartis, our MS community recently participated in a research study exploring the reasons why people don’t always take their disease-modifying therapies as prescribed. Adherence to medication is a big issue in chronic conditions; although we all mean to take our meds as prescribed by physicians, good intentions can fall by the wayside when real life interferes with our plans! Decreased adherence could lead to less medication efficacy, more relapses, and a higher burden of disability for MS patients.

By exploring the messages posted in our vibrant MS forum, and carrying out a review of the scientific literature, we constructed a new questionnaire called the “MS Treatment Evaluation Questionnaire” (MS-TEQ) that sought to explore and quantify the barriers that get in the way of people taking their DMTs as prescribed. As part of the validation process we also showed the questionnaire to some local MS patients to ensure it was easy to understand. In December of 2009, we sent out an invitation to 1,209 carefully selected patients and asked them to complete the MS-TEQ. Within just two weeks, we had complete responses back from 442 patients, a 37% overall response rate.

The MS-TEQ addresses three areas: 1) MS-TEQ Barriers: the barriers faced by patients that stop them from taking their meds as prescribed (e.g., forgetting), 2) MS-TEQ SEs:  the side effects they experience (e.g., injection site reactions), and 3) MS-TEQ Cope: coping strategies they use to try and cope with these side effects (e.g., using an ice cube to reduce pain and itching). Our analysis found that for every 10 points on the MS-TEQ Barriers scale, patients did not take 10% of their medication as prescribed. However, we also found cause for hope; every coping mechanism they used to try and ameliorate their DMT side effects had a positive effect of 4% on the proportion of their DMTs that they took as prescribed.

At the conference’s poster session, we got a lot of interest from attendees and gave away all of our handouts and copies of the questionnaire, so you might be seeing the MS-TEQ in a clinic near you any day now! Our hope is that the questionnaire will help patients and their healthcare providers to understand why someone is struggling to take their medication as prescribed, and to give them a way of measuring this over time. We are currently preparing a manuscript to submit to a peer-reviewed journal to share our findings with the rest of the academic community.

Do you have trouble taking your MS disease-modifying therapies as prescribed? Check out our treatment database. Thousands of our members have written evaluations of the drugs used in MS, including advice and tips on how to stay adherent to your medication to improve your outcomes.