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.

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.

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 Sarah and Keith. Sarah started writing about her fiancé Keith’s journey with a rare lung disease back in July of 2012 on her blog Taking a Deep Breath. In this first part of our three-part series, Keith and Sarah talk about why they started blogging, and the difficulties of finding the right diagnosis.

What prompted you to start blogging about Keith’s journey and what’s the reaction been? 

[Sarah] When Keith’s health took a turn for the worse in the winter of 2011, I asked him repeatedly if he would allow me to share his story, knowing that we were likely going down a very difficult road, and selfishly wanting lots of support while we (I) went down that road. He wasn’t comfortable sharing until the day we drove away from his respirologist’s office, after an appointment where the doctor said that Keith was “fine,” wasn’t a candidate for transplant, and didn’t need to be on oxygen. We knew different. I blogged, we got a second opinion, and Keith was on oxygen within 4 days, and referred to the transplant program at Toronto General Hospital (TGH) within 2 weeks.

At what point did you know that something was not right? What was your first symptom?
[Keith] I got a cold that wouldn’t go away, and it turned into a pneumonia. I was hospitalized in the fall/winter of 1997. I never fully recovered.

What was involved in finding a diagnosis? Did Keith ever receive an official diagnosis?
[Sarah] Keith visited various specialists and respirologists and was misdiagnosed with various diseases (BOOP {bronchiolitis obliterans organizing pneumonia}, COPD, asthma) before the final diagnosis of diffuse panbronchiolitis (DPB) was given. It was a strange diagnosis since the disease strikes people of Asian descent, and Keith is Caucasian. DNA testing was done to see if there was Asian blood in his makeup, but there was not. Interestingly enough, in the final pathology of Keith’s old lungs after removal – this diagnosis was confirmed.

What advice do you both have for patients that are struggling to find a diagnosis? 
[Sarah & Keith] Ask as many people as you can who have experience with lung disease, or know someone who has it. Find out doctors’ names, get referrals and stick to your guns. If you don’t feel right, tell someone!

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.

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 jtjackson, a two-star member.

What is your favorite time of the day?
My favorite time of day is the morning, about a half hour after being up (between 6:30 and 7:30 a.m.), having my first cup coffee and thinking about what I can do today. I always have so much energy at this time and feel like I can conquer the world. Usually, reality sets in about 11 a.m. that I really do have MS and I need to slow down and rest (due to fatigue) so I am able to function enough to do the easy stuff.

What makes you laugh?
My two daughters (ages 27 and 17) really make me laugh (belly laugh) when they get to talking about themselves, their lives, people they’ve met – they literally do impressions of all kinds of people, from the abled to the disabled (they call them and me the “special” people), and watching them do their thing really makes me laugh… even at me!

What are people most surprised to learn about you?
Most people are surprised to learn that “what you see is what you get” when it comes to me. I’m down to earth, speak honestly and am pretty straight forward about me/you, my feelings about things, about the true positives of life no matter what cards one is dealt. I think most people are surprised that my life’s tune has really never changed, even though my circumstances have.

How has PatientsLikeMe improved your life?
PatientsLikeMe has improved my life by seeing many people who have similar or not-so-similar challenges “living,” I mean truly living, with this disease. Although I have only been diagnosed with MS for a little over a year, it has brought so many changes and challenges that I have dealt with pretty much on my own, and it is truly nice to have a place where I can share if I want to, or just read what everyone else has to share. I feel so “not alone.” Thank you all for being there!

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview a PALS each month to find out more about how he or she approaches life. This month we are pleased to feature swhite.geo, a two-star member.

What are your interests and hobbies?
Since my diagnosis, I enjoy helping others newly diagnosed and getting them on the right track. Then there’s the technological side; I’m always scouring the net for the next gizmo to help me overcome the challenge of life with ALS and keeping that glass half full. Being from Fayetteville, North Carolina, it’s hard not to mention the military, ACC basketball and summer trips to the beach, the mountains and Carowinds. But ALS certainly puts its own twist into all aspects of what we previously called life.

For instance, my love for getting out and hitting that little white golf ball around has transformed into just being able to watch Tiger win another tournament. Other interests have been gardening, racquetball, tennis, beach volleyball, tinkering with the cars and going to any live sports event or concert. I’m also taking full advantage of the free movie admittance at the local theaters weekly.

What accomplishments are you most proud of?
My time in the US Air Force has been both the most rewarding and selfless aspect of my life, but I feel I gained so much from those 21 years that I came away from it with the upper hand, even though the reason I had to leave was medical retirement thanks to “Uncle Lou!” Other than that, I’m proud that I completed the “bible-in-a-year” reading, sung on-stage with Karen Carpenter, and that I’m a melanoma survivor.

What are your top three motivators in life and why?
I think the first would have to be what my boys, Shane and Vance, get from seeing how I deal with the challenge that is living with ALS. Second, I owe my life to Jesus Christ, who pulled me from the ruins of an immoral, mortal existence. Thirdly, to learn as much as I can in the time I have left, and to transform that into something I can give back.

What other PatientsLikeMe patients have you enjoyed getting to know and why?
This is the hard one, as I’ve taken something from each one of them and made it a part of me. I was so sad to hear of the passing of David Abell, who was so instrumental in moderating the Living with ALS Yahoo! Group. He was a mentor of sorts, and my wife has had several very educational conversations with his dad, Jerry.

Specific to PatientsLikeMe, BobbyB is about as reliable as they come, but then there’s the twisted humor of Super Dave, always controversial, and others like carylnjay, my overseas penpal Petra, SheilaT, an author, and just anyone who teaches me a thing or two or makes me smile, and those are many!

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview a PALS each month to find out more about how he or she approaches life. This month we are pleased to feature thornbal, a two-star member.

Where do you find joy?
I find joy in my family and friends, especially my two daughters. I have really enjoyed every day this summer with my daughters home on break from school! We all enjoyed reading the latest Harry Potter book! Also, I find joy in everyday things like reading the chat board on PatientsLikeMe and watching my favorite soap opera General Hospital (one thing about a soap opera… it is never a repeat! LOL). During the school year when my daughters are at school and my husband is at work, I always enjoy watching movies, television shows, and reading books… all online. And, there’s always Starbucks! Or just looking out my computer room window at my little flower garden, watching the birds and listening to all the sounds of nature.

What person do you admire most?
I don’t think there is any one person I admire most. I admire everyone living with ALS. Really, anyone living with a terrible illness… just to do what it takes to “keep on keeping on” is admirable.

How have you evolved since your diagnosis?
Like most people, I used to be so wrapped up in the “business” of living… working 40 hours a week, working around the house, running errands, etc. Since I was diagnosed, I have been able to weed out some of the things taking up my time that were suddenly not so important any more. When I still worked, I cut down my work hours and spent less time cleaning my house.

In the past several years, I have spent more time with family and friends, have traveled more, have spent more time in my garden, etc. Even though those everyday tasks still have to get done, I spend a lot less time on those tasks than ever before and more time doing the things I enjoy.

I was never an extremely religious person. I do, however, now consider myself a much more spiritual person. I have sought and found the answers that are right for me to some of those “big questions” about life.

What have you learned from PatientsLikeMe?
I have been able to read other people’s opinions and views on so many different topics. I have learned that oftentimes when dealing with ALS, the answers to my questions and the support from other people dealing with the same problems can easily be found here.

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 Joy, a one-star member.

What inspires you?
Everything inspires me. The very scale of life rocks and sways me. A sunset inspires me to find more color in my own life. A bird in flight invites me to find more easy joy and laughter. A tree inspires me to appreciate my roots and my ability to bend to survive and to realize that I only grow more beautiful with age. A flower inspires in me a consciousness of just how beautiful and fragile life can be. My granddaughter inspires in me a belief in the mystery of creation. And my dad inspires in me a belief in myself. My mother inspires in me strength and endurance. And my husband inspires in me a desire to love most deeply. My soul sister inspires in me a genuine and profound trust. My son inspires in me a purpose and reason in life. And my dogs inspire in me a desire to approach each day with excitement and a willingness to accept the gifts of the life graciously. Someone in need inspires in me a desire to give. And when a friend reaches out to me, they inspire hope. Every brush with life inspires me on to the next moment.

What’s the funniest thing that’s ever happened to you?
No one event jumps out at me as funniest. What I remember most are hundreds of moments of belly laughs in my life. The funniest thing that has happened in a while had to do with my underwear, my dog and our visiting kids (my son, my daughter-in-law and our granddaughter). I was folding clothes from the dryer, and my dog stole a pair of my underwear and made a game of ‘chase’ out of it. Everyone was yelling and running, trying to catch him with my pink underwear on his head and wrapped around one leg. “He went that way!” “WATCH out, he’s behind you!” “Wait, wait, I think I’ve got him!” It was funny and embarrassing, but we were all weak with laughter by the time the dog fell to the carpet exhausted. Game finally over.

What is your favorite place and why?
I love to be deep in the forest where it’s quiet and cool. I like to shop so the mall is interesting. Restaurants are a favorite place of mine too. My husband and I discuss the menu, and he orders for me. I feel like his queen when he does. But my most favorite place in the world is home. Home is where I find comfort, refuge and well-being. It is home where I am surrounded by love.

What do you like best about PatientsLikeMe?
I love the ability to graph out MS progression and keep track of all my medications and symptoms. This will come in handy for doctor visits. The graphs are also very revealing in that I can track exacerbations and connect the dots. What I love most about PatientsLikeMe though is the feeling of community and a sense of warm and open invitation to everyone. This is a wonderful time to say thank you to the administrators and support folks here. You work so hard and listen so well to our suggestions. Thank you to all the members and caregivers here too. You’ve made PatientsLikeMe our community.

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview a PALS each month to find out more about how he or she approaches life. This month we are pleased to feature Bwana a two-star member.

What is your favorite time of day?
My favorite time of day is late in the evening. I sit in my garden and listen to the sounds of nature and look into the sky and think about so many things.

What makes you laugh?
When I was diagnosed with ALS right before Christmas, my daughter-in-law gave me a baby book, and the title is “ALL ABOUT ME.” In this book, I can write stories of growing up and put photographs, and I’ve even put some DVDs of my favorite music, anything that would help my unborn grandchild know what kind of person I am or was. One of the stories was about my two brothers and myself. We had a cemetery behind our house that we used to play in, and one Mother’s Day, we had no money, so we took a bouquet of flowers off one of the graves and gave it to our Mama. She never said a word, but we were sure she knew where they came from. If that had happened in this day and time, I’m sure we would still be “serving time” in prison. Writing these little things that happened during my youth makes me laugh. One last thing. Can you really tip a cow?

What would people be surprised to learn about you?
One of the things I think about – and no one knows this – is I’ve never taught my six children how to kneel down and pray. I’ve taught them so much about nature and other things but not that. When I found out that I have ALS, believe me, I went to my knees very quick. I am trying to be strong for my children, and I truly hope this will be the last lesson I can teach them is “how to pray.” Then this journey will have been worth it.

How has PatientsLikeMe improved your life?
When I was first introduced to PatientsLikeMe, I was completely lost and felt so alone and thought I had to take this journey by myself. Not so. I quickly met Dave, Bobby, TipaCow, Pappy, Jeannie and many, many others that are on the same journey. I began to read their profiles and progress reports and thought “what a group of troopers” and how nice to have somewhere to go in good and bad times. I’ll always be grateful for you.

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview a PALS each month to find out more about how he or she approaches life. This month we are pleased to feature Edwin, a three-star member.

What inspires you?
For me, it is not what but who, and the answers are completely different now than they were before my MND diagnosis, because prior to my diagnosis I let materialism rule my life. God inspires me in more ways than I can possibly say. With today’s technology we have the good fortune to not only be able to appreciate and enjoy all of the magic, splendors, and wonders of our own planet, but those of the universe too. Every morning I wake up and thank God for my creation/existence, knowing that this lifetime is an opportunity for me to experience, learn, and give, and that it is just “a blink of the eye” of my eternity. Many of my fellow humans on the planet inspire me. I speak of those who, without any hidden agenda, give of themselves for the betterment of others. I still have much to learn from these people as I strive (hopefully) to be like them.

What’s the funniest thing that has ever happened to you?
To set this up right, first you have to understand that while I enjoy having a good time, I’ve always been the kind of person (stiff) that has had to be in control at all times. Back in the early 1980s while we were living in Southern California, Patty (my wife/better half) and I were out on a Saturday driving around doing a bit of furniture shopping. I had an excellent sense for getting/driving around since at the time I was doing on-site computer fix-it stuff for a living. We had finished our shopping and were headed for home when I simply drew a blank on where I was and how to get home. So, I pulled to the curb, looked over at Patty and asked, “Where the hell am I, and how do we get home from here?” Think about it, guys never stop to ask for directions and here I was asking my wife! Through the years Patty has enjoyed telling this story to people that have gotten to know me. Of course now with what I have going, there will be plenty of opportunities along the way to ask for help and laugh about it (continuing learning opportunities/experiences for me).

What is your favorite place and why?
There is a stretch of road here in Colorado over in the southwestern part of the state that runs from Silverton to Ouray (part of US 550, also called the “Million Dollar Highway”). For some reason that I can not explain I have always felt closest to God when driving/riding this road. My intent when I’m gone is to have my ashes spread at Red Mountain Pass along this route.

What do you like best about PatientsLikeMe?
The fact that it gives all PALS the opportunity to share all of their experiences (profile of condition, treatments, and symptoms) while also providing an open forum for discussion and support of PALS and CALS. Who could possibly ask for more?