The Value of Openness: The PatientsLikeMe Blog

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 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?

This month is momentous because we’re celebrating a major milestone at PatientsLikeMe. We now have over 1,000 PALS in our community. Thank you for making PatientsLikeMe your home and spreading the word to other PALS. The more patients we have, the more we learn from each other.

We are also thrilled to announce the debut of two new communities for Parkinson’s disease and multiple sclerosis (MS). If you know people with either condition, invite them to join PatientsLikeMe. We want them to know what you’ve already learned – that when patients share their data, it empowers everyone.