In this second interview of our three-part series, Keith and Sarah talk about how their daily lives changed and the importance of connecting with others. If you missed our first interview with Keith and Sarah, you can find it here.

What were the most noticeable changes you had to make in your daily life?
[Keith] My ability to enjoy time with family was impaired because I could no longer be active with my children or my wife. I could not work because when I tried to do the simplest task, I became out of breath. I could no longer carry a toolbox, go up a set of stairs, or do everyday tasks at home without becoming winded and requiring rest. I wanted to rest all the time and was never comfortable.

As a caregiver, what things could you do to help Keith the most?
[Sarah] Keith eventually got to the point where he needed me for many personal tasks as well as taking care of all of the home tasks. I showered him, and took over our business, and we hired a cleaning service every two weeks to try to keep the house in order. Keith really needed to know that I was there for him. I made lots of special food for him because he needed to gain weight in order to be active on the transplant list.

How did you connect with other transplant patients and why did that help?
[Sarah & Keith] From the beginning, we began to seek out others who had received lung transplants. We found one in our town and eventually met many others through our many visits to the hospital. The lung transplant “family” is a tight one and it really helped to have others to talk to who were waiting, as well as those who had received their transplants and could offer hope and advice. Facebook became a good way to find people through other friends from the hospital, and eventually we developed a close group of “lungies” that we keep in touch with.

Besides PatientsLikeMe, what would you suggest to others patients who are trying to connect with someone like them?[Sarah & Keith] Finding groups on Facebook that relate to organ donation / transplant and beginning conversations with others is a great way to find people. Starting your own Facebook group or blog to raise awareness about your situation is another excellent way to let people find you.

Sarah and Keith are part of our “Spotlighted Blogger” series, where we talk with people who are sharing their personal health experiences to help raise awareness and change healthcare for good. Sarah started blogging about her fiancé Keith’s journey with a rare lung disease back in July of 2012 on her blog Taking a Deep Breath.

Of all the psoriasis patients we’ve interviewed, Erica was hit by this highly stigmatized autoimmune condition the earliest – she developed visible symptoms at the tender age of 9.  Now 21, she shares her decade-plus journey from being the girl that people avoided in school to an increasingly confident young woman who has finally started meeting others like her, people who are also living with the daily challenges of psoriasis.  What difference has that made for her?  And how has she started to take control of her treatment course as of late?  Find out that and much more in this inspiring interview.

1. Tell us how you were treated by classmates and school nurses growing up.  

The first few years were the hardest, trying to understand the disease and how it affected me. It was hard to explain to others, since they didn’t really want to listen. Most of my classmates avoided me because they were afraid they would catch it, no matter how many times I would explain it they never believed me. I was sent to the nurse a lot because I’d scratch my head or my arms till they bled. The nurses never wanted to deal with it so they sent me home. Now that I’m older and can explain it better, I don’t have as many problems. If someone stares at my skin, I simply tell them it’s psoriasis and it’s not contagious. But the hardest thing I had to go through was people avoiding physical contact with me.

2. How important is it to find the right dermatologist? You’ve said yours is like a second mother.

I’ve known Dr. Clifton since I was 13 years old, and I’m 21 now. It’s very important to have that great relationship with your doctor. They need to know every single little detail of your life when you have a serious disease such as psoriasis, as so many things can cause it to get worse or better and can react with the medications. You need to know that they will listen to you and take the time you need. You also need to trust them with your life. The last time I saw Dr. Clifton after three years, I had changed, however, and I didn’t agree with the treatment course she wanted to do. I respect her advice but I don’t agree with her [at this point], so therefore I’ve decided I want to find a different dermatologist.

3. What’s helped you develop the confidence and love of life you have now?

I still have days where I feel depressed but I’m lucky enough to be surrounded by amazing supportive people in my life. God is the main reason I overcame the depression. I pray a lot! I also read my Bible, listen to Christian music (Skillet is my favorite band!), talk to someone and change my way of thinking. When I feel sad or upset I’ll look up Skillet on the laptop and just play it as loud as I can and just breathe. I always feel better after that. I go to an amazing church that has some awesome people in it. I know I can call or text any of them any time and they will be there for me. If I’m focusing on the bad, I try to look at the bright side of things and that seems to help as well. But praying is by far the thing that makes me feel best and at peace.

4. What’s it been like to connect with other psoriasis patients at PatientsLikeMe? 

Growing up with psoriasis, and having no one else around with it, was extremely hard. I had no one to connect with. But since being on the site, I’ve made some great connections and have made some lifelong friends. The strange thing is how much we have in common and how many of the same things we’ve been through. What’s awesome is being able to tell someone what’s going on with my skin and they really understand because they’ve been through the same thing. In the past nine months, I’ve also met a lot of people in person with psoriasis and I’m always telling them about this site!

Did you know we now have more than 30,000 members in our fibromyalgia community?  In honor of this major milestone, we decided to interview DarkAuburn, who joined in 2009.  She’s a three-star member, which means she’s earned our top star rating for sharing complete, in-depth information about her fibromyalgia symptoms, treatments, quality of life and much more.  In addition, she has opted for a public profile, which means that anyone on the Internet (whether a PatientsLikeMe member or not) can learn from her detailed condition history.  Check out our interview with this veteran member below.

1. Tell us a little about the PatientsLikeMe fibromyalgia community.

I was not expecting much when I found the site. I thought it would be more of an informational, non-involvement sort of site. I was surprised, as in a good surprise. I don’t know many people where I live that have fibromyalgia, and I didn’t realize how welcoming this site would be. I found people who, like me, wanted answers. The sharing of information and support was a nice thing to find.

2. What’s it like to have access to the experiences and data of tens of thousands of other fibromyalgia patients?

It’s staggering. I didn’t know much about fibromyalgia before I was diagnosed. I can’t say I’m an expert now either. But the information has helped me better communicate with my doctor.

3. As a wife, mother and grandmother, how has fibromyalgia affected your family?

People ask my husband all the time how I am doing. He will tell them that I have good days and bad days, and we have learned to take each day as it comes. When I told my children, they were concerned. My daughter is a research junkie, and she looked it up and explained to her brother what I have. His response was, “That explains a lot.” Since I don’t get to see my children and grandchildren on a daily basis, I just deal with fibromyalgia and play with my grandchildren.

4.  What’s the most important thing you’ve learned from other patients?

I have learned that I am not alone in this.

Getting the right diagnosis can take many years, or in the case of PatientsLikeMe patient Pampe, many decades.  After experiencing her first Lyme disease symptom in 1973, it was not until 2012 that she finally received a diagnosis that explained her many symptoms.  Discover what hindered the process and what’s she learned along the way in our interview with this highly active member, who has contributed more than 12,000 posts to our forum since joining PatientsLikeMe in 2010.

1.  You had a very long journey to discovering your Lyme disease. Where were some of the obstacles?

The main obstacle to an appropriate diagnosis of Lyme disease for me was the lack of knowledge in the traditional Western Medical System. Had my general practitioner (GP) known about the testing for Lyme, I might have been diagnosed 10-12 years earlier. Many people go from doctor to doctor and undergo a horrific array of tests and medications before they find out it is Lyme disease.

2.  We have a new Lyme Disease Forum at PatientsLikeMe. What is that important to you?

After my diagnosis and two other members of the Fibromyalgia Forum discovering they too had Lyme, I think I was pretty vocal in expressing the need for a Lyme Disease Forum. There are several clinical studies indicating that many people with autoimmune disorders, fibromyalgia, chronic fatigue syndrome, multiple sclerosis (MS), ALS and Parkinson’s disease actually have underlying Lyme disease or co-infections.

3.  You have a three-star profile as well as more than 5,600 helpful marks for your forum activity, which means you are one of the most helpful members around! What do you get out of using PatientsLikeMe?

I have always considered it an honor to help people both professionally and as a volunteer. Most people come to PatientsLikeMe in a state of shock, sadness and loneliness. They need support and information, and PatientsLikeMe can provide that in many ways. I have tried to help with support and information. What I get out of it is the absolute joy of seeing someone rise above his/her diagnosis and find new ways of being. It has been my great joy to see 4-5 new people from other forums find a Lyme disease diagnosis after reading some of the information I posted.

4.  Your profile reveals that you have an interest in alternative medicine. Where does that stem from?

During my working life, I was a nurse and psychotherapist. I was lucky to train in areas where alternative, holistic practices were available. I have seen them work and work well in many instances. I personally use alternative care for most of my health needs. There is no doubt that what we put in our bodies (mentally, physically, emotionally or spiritually) affects our health. It seems reasonable to me that we then must look at all those things and change what isn’t working.

Recently, PatientsLikeMe sent a message to our members about an opportunity to participate in the Impact of Personal Genomics (PGen) Study, led by researchers at Harvard and the University of Michigan.  Each of the 1,000 study participants receives personal genomic testing services at a significantly subsidized discount.  Using a series of surveys, the investigators will then look at the risks and benefits of learning this information.  What, for example, will participants do with their discoveries?  Will they make health behavior changes?  Will they tell anyone – and if so, who?

PatientsLikeMe member PF Anderson decided to not only join the study, which has now reached its maximum enrollment, but to also start a blog about her experience.  Find out why and much more in our interview below.

1.  What led you to participate in the PGen study?

The “why,” for me, had three main drivers. First, I’ve been ill for over a decade, and only recently tracked it down to what appears to be celiac disease, but all the blood tests have come back negative for both celiac and gluten-intolerance or wheat allergy. Second, I am both a medical librarian and an emerging technologies librarian. I firmly believe in supporting research both by doing it and also by serving as a subject when appropriate. This project matches my professional interests in several areas, not the least of which has been an emerging awareness of the essential nature of personal genomics and big data to moving research and discovery forward, especially in the areas of rare diseases. Third, curiosity. My family seems to be packed to the gills with various genetic conditions, and I’ve always thought we’d make an interesting study!

2.  Talk about the decision to blog about the study as well.

Why blog? Because, assuming that this IS an important area for research to change the lives of real people, then it is absolutely critical to educate, inform, and openly dialogue about the risks and benefits of personal genomics. Some people I talk with are quite worried about some aspects, while others aren’t even thinking about potential risks! I’m in the middle. I know there are risks, I’m aware that the benefits we hope for in the long term aren’t here yet, but I believe we have to start somewhere to get where I hope we’re going, and someone has to take the risks to hopefully shift the balance.

I hope that the more of us do this, and talk about it, that this will help other patients and individuals think through why they would or would not want to learn this. Also, while I am enormously impressed with the WeConsent.Us website for its information about the risks and benefits of personal genomics and sharing personal data, there is something about telling a story from a real person in their own words that has more impact. Hopefully my own thoughts and story will enrich what WeConsent.Us is doing.

3.  You recently received your genetic results.  What’s that been like?

Frankly, the results so far have been pretty disappointing. There are two branches of the study, one using the testing service Pathway Genomics, and the other using the testing service 23andMe. Each of the two companies runs saliva scans for different conditions, as well as other information. The primary conditions of interest for me were not included in the scan by Pathway Genomics. The results were interesting, but not very relevant. What was most interesting is that, according to the results, for the flock of conditions that run in my family, I am not at risk for ANY of them, including some I am already diagnosed as having. That seems rather surprising, so I am puzzling this over. I suspect that these are actually related to the core condition [celiac disease] that the scan didn’t include.

I am also a little worried that if I share my test results with my doctors, and the results show that I “don’t have” or am not at risk for these various conditions that run in my family, that the healthcare team might be less vigilant in monitoring these. Because of worrying about the risks of my healthcare team misunderstanding the results and needing the celiac test, I decided to actually spend my own money on getting the other [23andMe] scan. I’m nervous about the money, but I really feel that the information from the one test is incomplete without the other, and the risks of the incomplete information undermine the value of the original test.

4.  At PatientsLikeMe, you’ve been able to chat with other PGen study participants in the forum.  What have you gained from that?

The forum conversations have been fascinating! It is really interesting seeing what sort of questions other people have, their reasons, their assumptions, the information that they bring to the table. Many of the conversations there have triggered new questions for me, and opportunities to learn more.

5.  If you had to pick one key takeaway from participating, what would it be?

We aren’t “there” yet, but if we ever want to get “there,” we need to start somewhere, and that’s here and now.

Welcome to the latest installment of our “Spotlighted Blogger” series.  This spring we’ve been focusing on psoriasis patient bloggers, starting with Lissa in March and Alisha B. and Jessica in April.

Today, we’d like to introduce you to Joni (girlwithspots), a PatientsLikeMe member who writes a blog called “Just a Girl with Spots.”  How has she found acceptance with this chronic skin condition (which can cause itching, rashes and plaques) as well as the courage to wear a bathing suit?  Check out our interview below.

1.  Tell us about being diagnosed with psoriasis.

My diagnosis at age 15 was frustrating and dramatic. I was already super awkward – tall and lanky with a mouth full of braces – so to me it was the end of the world. The spots seemed to come on overnight and they took control of my skin. I felt self conscious and ugly all of the time. Even the word psoriasis felt ugly to me. I wasn’t comfortable talking about my skin condition to even the closest of friends. My friends and family knew that I had psoriasis, but not any of the emotions and stresses that I felt as a result of it.

At the time of my diagnosis, I didn’t understand why there was no magic pill that I could take and the spots would go away. Though told over and over, I also didn’t fully understand that my lifestyle and choices would help to play a large role in controlling my outbreaks. I played lacrosse and danced on the kickline, so I wouldn’t allow it to stop me from doing the things that I loved. But there were always the extra steps I had to take to cover it up to feel a sense of comfort – always two pairs of dance tights, leggings and long sleeves in the heat, extra make-up, etc. So even though I did the things I wanted, there was always something that held me back from feeling as carefree as a teenage girl should be.

2.  You’ve blogged about finding acceptance with psoriasis.  What are your top tips, and how does blogging play a role?

Not talking about my condition stuck with me until very recently, and it feels amazing to have finally let go of that internal struggle. Growing up with psoriasis was a challenge that I’m glad I had, it’s allowed me to find myself in a way that may not have happened otherwise. Blogging about living with psoriasis has been extremely therapeutic for me and is the reason why my skin is currently under control. It’s allowed me to get to know my skin on a deeper level and pinpoint what is and what isn’t working for me. My skin is always top of mind, but I always felt stressed and emotional about it, which was actually making it worse. Through a daily journal and blogging, my treatment plan is focused and I feel more relaxed than I ever have about my skin.

Psoriasis treatment is so much about trial and error; there are things that work wonders for others and would do absolutely nothing for me. It’s helped me to organize my thoughts and my own personal research to discover the right formula for me. For me, it’s eating fresh and organic foods that are higher anti-inflammatory, it’s exercising 3-4 days a week, using tea tree oil and heavy moisturizing creams and taking several supplements that I’ve found to be beneficial (daily multi-vitamin, omega-3 fish oil, milk thistle, turmeric, biotin, vitamin B-12, acidophilus). But I always find my biggest relief through the sun, so maybe it’s time insurance starts picking up the tab for my tropical vacations!

3.  I see you vacationed in Florida over Memorial Day weekend.  How did you cope with being in a bathing suit and “having spots”?

I had really wanted to find a new bathing suit for the summer that was white with red polka dots, so I could call it my new camouflage. I decided that instead of running from my spots, I needed to own them in my own way! But unfortunately I didn’t find one in time before I left for Florida! But even knowing and deciding that, I still had anxiety about being in a bathing suit. The past few sunny weekends had pretty much cleared up most of my upper body. But the spots on my legs have always been stubborn, so prior to the trip I had been treating them with a steroid ointment. That only left me with red spots and dark bruises, so not much better!

I decided the day before I left to stop stressing about it. I was going to Florida to celebrate the birthday of a close friend and I wanted to focus on enjoying the weekend, not hiding my spots. I posted about it a few days before I left and got several emails from friends with words of only love and support. I know that attitude plays a large role, but I also believe it’s necessary to only surround yourself with people who love you for you. And that doesn’t just go for people with psoriasis, that’s for everyone.

4.  What’s the most helpful thing you’ve learned at PatientsLikeMe?

PatientsLikeMe has shown me that I’m not alone in my struggles and feelings about living with psoriasis. Having the ability to connect with people who understand exactly what I’m going through has reinforced the reasons that I started my blog. People with psoriasis are always there to provide guidance, treatment recommendations, and most importantly, their love and support. If I can help at least one person with my blog, then I’ve done what I set out to accomplish.

Answering frequent questions about my own condition lets me track my progress and allows me to take a hard look at how my skin is reacting from day to day, week to week, month to month. PatientsLikeMe really understands how different conditions can affect your day to day health, but most importantly how it affects your mental well-being. You understand how important a healthy mentality is and the large role it plays in battling any disease or condition.

“I don’t really know too many people around here with psoriasis.   It was hard to relate with somebody.  My family, my friends, my husband, they’re great support, but they can only see what I’m going through, they can’t go through it the way I do.  It’s really important to be able to connect with people who truly understand what you’re going through.”

– Psoriasis Patient Lissa

In March, we introduced you to Lissa, a psoriasis patient who had recently started blogging about life with this chronic skin condition.  At that time, she had begun UVB photo therapy treatment for her psoriasis.

Now, several months later, you can see how Lissa is doing after completing her 51st UVB photo therapy session – and how PatientsLikeMe continues to play a role in her wellbeing – in a Skype video interview with our partner Patient Power, a site dedicated to connecting you with the experts on your condition.  That means doctors and patients.

Lissa Conger: Managing Psoriasis and Harnessing the Power of Patient Communities from Patient Power® on Vimeo.

Check out Lissa’s engaging interview with Patient Power founder Andrew Shorr, a leukemia survivor, above.  And stay tuned for more Patient Power videos featuring PatientsLikeMe members – including patients with multiple sclerosis (MS) and cancer.

Welcome to the latest installment of our “Spotlighted Blogger” series.  This spring we are focusing on psoriasis patient bloggers, starting with Lissa back in March and Alisha B. a few weeks ago.

Today, we’d like to introduce you to Jessica Gough, a 19-year-old from the UK who recently started a blog called Jessica and Psoriasis.  What kind of reaction has she gotten?  And what tips does she have for those who feel isolated due to this chronic skin condition, which can cause itching, rashes and plaques (scaly patches)?  Check out our interview below.

1.  How are you feeling about being a newly minted “psoriasis blogger”?

The best word to describe how I feel about being a psoriasis blogger is relieved. I chose relieved because there is so much I have experienced throughout my psoriasis journey – both positives and negatives – that I wanted to talk about that even my closest friends and family were unaware of.  By writing my blog I have been able to explain all of my experiences without having to face the challenges of approaching the subject in general conversation. I have also found that by using my blog to share my journey with psoriasis it has enabled me to talk and share information with other psoriasis sufferers, which I have found warming and comforting.  Since starting my blog the support and feedback I have received has been overwhelming.

2.  Tell us how psoriasis affects your daily decisions – from shaving to clothing.

I believe with psoriasis you choose how much you let it affect your daily life and decisions. For me I would say my psoriasis majorly affects my decisions based upon the way I present myself for the day. If I wake up and skin has flared up or has worsened, I find I have to choose the right kind of clothes. I tend to wear leggings most of the time as the material doesn’t rub my skin and they are cool in comparison to jeans for example. Also if I want to wear a jumper I make sure I have a top protecting my skin underneath so my skin doesn’t become itchy.

Dependant upon the look of my skin also affects decisions such as whether I can wear makeup or whether I can shave my legs in the shower. If my skin is red and flaky I try as much as possible not to touch it with products that could make it worse. This includes shaving my legs, although if I am going out to a nightclub or party, though, I will plan in advance in order to make sure I can shave my legs, and I will use moisturizers to make my face suitable for makeup. Other than clothes and personal care, I try to make sure my psoriasis does not affect my decisions.  However, sometimes with a flare-up my mood can be worsened, and I tend to find things harder to cope with generally.

3.  What is your personal recipe for getting through a psoriasis flare-up?

My personal recipe probably has to be not to give up. When you have a flare-up, it is a perfect opportunity to put tips and techniques to the test, ask other people what they would recommend or go back to your consultant and ask for help. I do usually have a routine of making sure I have a bath every night to relax and then covering myself in moisturizers and creams before bed to help me sleep better. I also wear socks and gloves depending how bad my skin is to stop me itching and making my skin bleed. I find the more I itch, the more distressed I become, which obviously worsens the flare-up. So I try to stop it from becoming a cycle.

4.  Any advice for someone who feels alone or isolated due to psoriasis?

I think feeling alone is a common feeling amongst psoriasis sufferers, and I certainly felt alone before writing my blog. My advice would be to talk to other people, find out about chat boards, blogs and charities relating to psoriasis, and use these resources to share ideas, stories and experiences with others.  You may be surprised at some of the feedback you receive. I used to feel that even though I had support from many people around me, no one ever actually understood what I was really feeling and what I was going through. Talking to other people gave me the freedom to say how I really felt and not be embarrassed. I personally believe that talking with others about living with my psoriasis has been part of my therapy.

Have you been seeing pink this month – such as on the lids of your Yoplait yogurt? That’s because it’s National Breast Cancer Awareness Month, a partnership of numerous organizations working together to promote breast cancer awareness, share information on the disease and provide greater access to screening services.

Here at PatientsLikeMe, we have 147 patients reporting breast cancer as well as 10 patients reporting inflammatory breast cancer (IBC), a rare but very aggressive form of the disease. Notably, 93% of our breast cancer patients are female, and 7% of them are male. (Although breast cancer primarily occurs in women, it can occur in men too, with approximately 1,910 new cases per year in the US for men.)

Given that breast cancer is the second most common form of cancer for women (after skin cancer), we know there are many more breast cancer patients and survivors out there than our membership numbers show. That’s why we encourage anyone affected by breast cancer to join PatientsLikeMe and share your treatment data to help others. For example, what was your experience with radiation or lumpectomy? What tips would you give other patients? These are the types of invaluable data points you can share here.

Finally, we’d like to leave with you a glimpse into the life of a real breast cancer patient who has battled the disease three times – as well as multiple sclerosis. Read our candid interview with TysabriSept08 in honor of National Cancer Survivors Day this past June.

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.
	(Amy) Thanks so much for sharing, bradley25!

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.

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	(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!

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.

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	(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!