6 posts from July, 2013

“Don’t try to do this alone.” An interview with multiple sclerosis patient and PatientsLikeMe member Ted.

Posted July 23rd, 2013 by

For our latest patient spotlight interview, we’re talking with Ted. Some of you may know him on PatientsLikeMe as sirsmedley’s and he’s been sharing his journey with the community since 2010. Ted was diagnosed with multiple sclerosis (MS) back in 2009 and he recently took some time to talk with us about a bunch of different topics: getting diagnosed, family history, Medicare Part D and his service dog Catti-Brie.


Can you tell us a little about your first experiences with MS and finding a diagnosis?
My first experience with MS was through my grandfather on my mom’s side of the family. He was diagnosed with MS in 1957 and passed away in 1996 due to complications during hip replacement surgery. After that, we didn’t think or even know there was a genetic element to MS until I was diagnosed 3 years ago. I feel because I had a somewhat classic MS progression and a family history that my diagnosis came relatively easy and quickly. It took only a month of testing to determine MS. It did help that I have a great neurologist who specializes in MS. I think the diagnosis hit my mom and grandmother harder than it did me. When I started to get symptoms I looked them up and saw that they were a possibility of MS, and after talking to family about my grandfather’s progression, I was ready for the news. Don’t get me wrong it was still a shock, and I cried with friends, family, and my fiancé. I took a deep breath and recovered quickly. I had a wedding to put together. I was married to a wonderful man almost 30 days after my diagnosis, which I know helped me get through the grieving process as quickly as I did. My husband doesn’t totally understand what MS is, but what person does that doesn’t have this disease? But, he has learned how to become a wonderful caretaker.

You’ve posted a bunch in the PatientsLikeMe forum about disability insurance and working with MS. Can you tell us a little about your experience with that?
I wouldn’t call my experience with social security favorable, but I haven’t had it as rough as some other PatientsLikeMe members. For me, the key was knowing as much about the system as I possibly could. I read many members’ advice and experiences on the subject as I could find. I had long conversations with my neurologist and followed many of his recommendations. I also got on the social security’s website and got as much information as I could absorb before finally filling out my application online. My plan was to apply, and then if I were rejected, I would secure a lawyer to contest their findings. It turns out that gathering all the knowledge that I did paid off. I was approved 7 weeks after I submitted my application online. Now I try to share the information and experience with other PatientsLikeMe members. I also just went through the process of applying for Medicare and getting financial assistance on part D (prescription drug plan). So, now I have even more information to share.

Jeanette, the PatientsLikeMe MS community moderator, mentioned that you have a service dog. How has that changed your daily life?
I probably could fill a book on how having a service dog has changed things for me, but I’ll try to keep it short. I have had dogs as pets almost all my youth and young adult life, but having a service dog is a whole other thing. Let me start by telling the story about how Catti-Brie came into my life. It started with a friend posting a picture of the cutest puppy I’ve ever seen on Facebook and a sad story about how she was rescued from druggies trying to trade her for drugs. I took one look at her picture and her beautiful eyes, and was instantly in love. But I regrettably posted that I would love to take her but I couldn’t. After a little while I couldn’t get her out of my mind, so I turned to my husband and we talked about how we no longer have a reason why we didn’t have a pet dog. The main reason was that we both worked and didn’t have the time, but now I’m no longer working and am on disability. So I contacted my friend and we took ownership of this tiny puppy. At first we were not sure of her breed, just that she was the cutest thing. Catti-Brie’s first visit to the vet is when we discovered her breed; the vet was excited for us. Turns out that Catti-Brie is a Catahoula Leopard Dog, a rare work type breed. I started off training her with basic commands and realized how smart she is. I contacted a few places and our local humane society got me in touch with a trainer that trains service dogs for disabled veterans. She agreed to help me train Catti-Brie as a mobility service dog. Almost 2 years later, Catti-Brie is a fully trained service dog. The training process has created an incredible bond between us.

How has she changed my daily life? She keeps me going. Just having to care for an animal keeps me motivated to get up and do things instead of just sitting there watching TV. Besides feedings, we take a long walk every morning before the sun is fully up. And a couple smaller walks throughout the day, and the occasional bath gives me an extra workout. She is trained to help with things around the house like laundry, so I don’t get as fatigued as quickly. When I am fatigued and my husband is at work, I know I can count on her to get the necessities for me. She is trained to aid me in getting up or getting help if I do fall. When she is with me, which is all the time, I feel secure. And the companionship that she gives is irreplaceable; I would be lost without her.

Are there specific tools you really like to use on PatientsLikeMe to track your health?
Right now, I think my favorite and most used tool is “Labs & Tests”. It gives me a place to record the tests I do at home, like my blood pressure. It also gives me a place to record results from tests done in my doctor’s office, and gives me a way to compare those results from visit to visit. Of the other tools, I use them, but I don’t get as much out of them. Maybe after I have had my condition for some length of time I can better see the value of those tools. I have tried to search for some trials with the Clinical Trials Tool but I live in a small rural town and to be part of most trials I would have to drive to a larger city. A tool I would like to see would be an injection site monitoring tool. When I was first diagnosed and put on REBIF I would track the site locations in a logbook, but that became cumbersome. So, I just did it with memory, but that became problematic as well. I kept losing track of where I injected last. Eventually I changed MS treatments to Copaxone, which was a little easier to track because it was daily, no weekend breaks to forget locations. But I still sometimes forget where my last injection site was, so I started to use the injection tracker on the Copaxone website. What I would really like is to be able to track my injections on the website where I track my medical things already. It would be a one-stop record keeping spot.

That’s great feedback Ted. How about connecting with others on PatientsLikeMe? Has that impacted your experience?
I have always been somewhat of a loner. As a child, even though I had 2 brothers, I mostly did things on my own. I have always tended to find the answers on my own. I would ask for help only if I exhausted all other avenues for the answer. But with MS there are no right answer, there is no “point A to point B” answers. With MS there is only antidote answers. You have to rely on others’ experiences. You have to piece together the puzzle pieces in hopes that it will work for you. PatientsLikeMe has given me a place to browse through other patients’ experiences and trials. It has given me a place to learn and share. PatientsLikeMe has helped me to learn that I’m not alone and that MS is not a disease that can be tackled alone. You need to rely on others, their experiences, their knowledge. PatientsLikeMe is a place you can curl up into the comfort of others who know what you are going though. They understand.

For others who might be recently diagnosed, what’s something they should know?
One of the first things that my neurologist said to me when I was diagnosed is that MS is not a death sentence. That is a great thing to know but I would also have liked to know that I’m not alone with this disease. Before I was diagnosed, I didn’t know anyone that had MS. Afterward I heard a lot of “OH, my so and so relative has that…”. It took going to a seminar put on by a drug company to finally meet some live people with MS. It was a relief to know that there are others who have this disease. It was also an eye opener to see so many different people from different walks of life that have MS. It also helped to put the progression of MS into perspective. In a room full of other people with MS you can see just how random this disease’s progression can be; some people who have had the disease for 20 years and seem fine, while other people diagnosed a year ago are in a wheelchair. What I guess I’m trying to say is that even though at times it seems like you are alone with this disease, and no one will ever understand what you are going through, you are not alone. There are people out there that want to connect with you and share each other’s experiences with you. Reach out to the different groups and forums and don’t try to do this alone.

Staying aware for UV Safety Month

Posted July 17th, 2013 by

It’s that time of year. We’re heading out on summer vacations, hitting the beaches and taking in some sun. But as we try to forget about all those work emails for an hour or two, we shouldn’t forget about sun safety. In fact, “skin cancer is the most common form of cancer in the United States. In 2009 (the most recent year numbers are available) more than 60,000 people were diagnosed with melanomas of the skin.”[1]


July is UV Safety Month and the Centers for Disease Control and Prevention has great information on how to keep safe during the hot summer months. Here’s a snapshot of what you can find…

If you’re living with melanoma, find others just like you in our growing community on PatientsLikeMe. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the community forums.


[1] http://www.cdc.gov/cancer/skin/

“Does anyone in healthcare want to be understood?” Sally Okun from PatientsLikeMe at TEDMED2013

Posted July 10th, 2013 by

It’s no secret that here at PatientsLikeMe, we think that the voice of the patient — your voice — is the number one way to drive medical advancements. At TEDMED 2013, our very own Sally Okun shared that message on one of the world’s largest stages. She asked the audience a very simple question. “Does anyone in healthcare want to be understood?” Check out the video to see Sally’s answer.



Are you sleeping? – Quick poll

Posted July 8th, 2013 by

We all know that sleep impacts our daily lives and overall well-being. Here at PatientsLikeMe, we want to learn more about how sleep affects your health, and how health affects your sleep. It’s all part of our ongoing “Are You Sleeping?” initiative, so take just a second to click the quick poll below and see how you compare to others.

How well are you sleeping?

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Don’t forget to update your symptoms, including insomnia, on your PatientsLikeMe profile. And check out what some of your fellow community members are saying on the “How the PatientsLikeMe Team sleeps” forum thread.

Not a PatientsLikeMe member? Not a problem. Start your own profile for free and tell us… are you sleeping?



“Retooling my attitude.” An interview with idiopathic pulmonary fibrosis patient & PatientsLikeMe member Lori

Posted July 7th, 2013 by

As part of our “Spotlighted Blogger” series, we’re talking with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. For our latest interview, we’re talking with Lori, an idiopathic pulmonary fibrosis (IPF) patient who started blogging about her journey back in October 2011. Her blog is called Reality Gasps and she balances stories of her daily struggles with dashes of humor that can make anyone smile. If Lori sounds familiar to some of you, it’s because she’s also part of the PatientsLikeMe community.  She recently took some time to talk with us about why she started blogging, the difficulty in finding a diagnosis and how connecting with others has positively impacted her life.


What made you decide to start blogging about your experience? What’s been the community response?
When I was first diagnosed with IPF, I started researching online (like everyone else). The medical sites gave me an idea of what was happening to my body, but they said nothing about how to live with this disease – and when I really thought about it, that’s what I needed. So, I turned to blogs written by other patients and caregivers. They were (and remain) incredibly helpful. I started my own blog as a way to make sense of what was happening to me. I’ve been a writer all of my life and the blog is my way of “talking it through.” I also see the blog as a way to give back to the amazing PF community. I hope that by sharing my experiences and passing along information, I’ll be able to help others cope with all that PF entails.

The response to my blog has been more than I ever hoped for. It’s a great way for me to keep family and friends abreast of what’s happening to me without managing an email list. Plus, other bloggers have discovered me and through them, I have also found several excellent blogs. Through the comments section, other PFers are sharing some really helpful insights for the whole community. And I love that we can all share a laugh or two about the craziness of our daily routines. What I’m happiest about, though, is that several readers have told me they forward some of my posts to others who they think might benefit from the message. IPF may be the source of my struggle, but what I go through on a daily basis isn’t unique. Fear, uncertainty, anger, stress, joy, motivation – these are the issues I deal with in my blog and they are universal.

When did you first know that something wasn’t quite right? Do you remember what your first sign or symptom was?
I was diagnosed officially in September of 2011. About 2 years before that, I started noticing shortness of breath when I climbed a flight of stairs or walked quickly. I shrugged it off as being overweight and out of shape. The shortness of breath continued to increase and my doctor prescribed a Flovent inhaler, figuring this was some kind of asthma or reactive airway condition. The Flovent didn’t help, and about a year later I developed a dry cough. It wasn’t much to start with, but over the next several months it got worse. I sucked on cough drops all day every day, and frequently coughed until I vomited. By the summer of 2011, I was so short of breath when I walked that I’d have to sit down and gasp for a while.

We’ve spoken to others with rare lung disease that had a hard time finding an official diagnosis. Was that your experience too?
Getting someone to understand that my symptoms went way beyond mild asthma was a long and arduous process. Even I had a hard time thinking it was anything more that just poor fitness and extra weight. But the coughing had gotten so bad that it was affecting my quality of life – I worried constantly that a coughing fit would cause me to vomit in public. My allergist thought the cough was caused by medication and started switching things around. As an afterthought, he ordered an x-ray. That’s when everyone saw the infiltrates throughout both of my lungs.

I didn’t know what infiltrates were, but I knew they were bad, so I got online and started researching pulmonologists. I wanted an experienced diagnostician who would help figure this out. I was fortunate because I unknowingly chose a doctor who belongs to the only non-university based IPF research center in the country. He ran extensive tests on me and did an open-lung biopsy to confirm the diagnosis. I talked with him extensively about his experience and felt comfortable that not only was he extremely knowledgeable about IPF, but that he would be an active partner with me as I learned how to manage and live with the disease.

That’s my biggest piece of advice to anyone – do your research and find a doctor who understands the disease. You may have to travel a bit to find him/her, but your life is worth it.

You titled one of your recent blog posts, “Retooling My Attitude.” Can you tell us about that?
On the surface, “Retooling My Attitude” is an homage to my grabber. I’d been thinking about getting a grabber for a long time – to retrieve things off the top shelf or recover socks that some how wound up behind the dryer. After I got sick, when I realized that simple tasks like picking up my bedroom were getting more and more difficult, I saw the grabber as more than just a simple convenience. Suddenly, it was a tool that offered me a little bit of control in an out of control situation. My disease has given me a new perspective on many elements of my life, and that provides fodder for much of what I write about. It’s also shown me that a good laugh can brighten even the darkest day, and so I also try to inject as much humor into my posts as I can.

It looks like you have quite a following on your blog. How do you think connecting on a blog or through an online community like PatientsLikeMe can help others with IPF?
From the beginning, I’ve been impressed with how warm, strong and supportive the pulmonary fibrosis community is. With the help of online locations such as PatientsLikeMe, I have friends across the globe who are always available to offer insights about everything from potential side-effects with a new medication to ideas for dealing with painful muscle spasms. It’s also really comforting to be able to connect with people who understand exactly what I’m going through, like the guilt that comes along with being “the sick one” in a family. And it’s nice to know that I’m not the only one who manages to get my cannula caught in the oven door!

Psoriasis in spring: what we’ve learned

Posted July 3rd, 2013 by

Spring has sprung, and for most people that means coming out from winter hibernation, shedding the layers and uncovering their psoriasis. As a part of our regular series, we conducted a survey of the PatientsLikeMe psoriasis community from March through June, receiving responses from over 300 patients. We asked everything from “How do allergies affect your psoriasis?” to “Does your psoriasis impact your spring clothing choices?”

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What’s your skinpact?
The Dermatology Life Quality Index (DLQI) is used to measure the “skinpact” that psoriasis can have on patients. It asks questions like “How self-conscious are you because of your skin”, “How much has psoriasis interfered with your personal activities”, or “Does your skin condition affect your ability to do sports?” The questionnaire runs from a low score of 0 (no impact) to a maximum of 30 (extremely large impact). This season the average skinpact in our spring survey was just below 9. The average for male’s was slightly lower than female’s (8.2 versus 8.8, respectively).

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To share what we learned, we’ve put together a new Patient Voice report entitled Uncovering Psoriasis. Don’t miss this in-depth look at how our psoriasis patients rated their “skinpact” this spring along with what specific factors can increase it, from age to the location of an outbreak to the percentage of the body covered with itchy, red plaques (a measurement known as the Body Surface Area or BSA score).

Interested in other seasonal psoriasis insights?  Find tips about living with psoriasis during the winter in our previous report.

Want to connect and learn from psoriasis patients like you?