4 posts from July, 2007

PatientsLikeMe Supports Team in Mid-Michigan MS 150 Bike Ride!

Posted July 27th, 2007 by

In late June, PatientsLikeMe Head of Business Development David Williams received an email from his high school classmate Bill Ogden. Bill needed help, you see. He and his wife were preparing to take part in the Mid-Michigan Multiple Sclerosis Bike Tour, which covers 150 miles over two days. Bill explained that they were riding in support of one of his old friends John Rafter (pseudonym), who was diagnosed with MS in 2001.

PatientsLikeMe donated $750 towards Bill’s fundraising goal. We salute everyone out there who steps up in support of patients they know and love, not to mention those they’ve never even met.

See the picture of the team with their PatientsLikeMe t-shirts!

PatientsLikeMe MS Patient Spotlight: Joy

Posted July 15th, 2007 by

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.

PatientsLikeMe ALS Patient Spotlight: Bwana

Posted July 15th, 2007 by

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.

Excessive yawning in ALS/MND

Posted July 7th, 2007 by

The first thing we experience about yawning is an urge to do so, one that can be so hard to suppress that we end up gulping down an extra serving of air when we’re trying to appear interested, or polite, or awake. But what if you yawned even if you weren’t tired, or bored? What if you got attacks of yawning six, seven, eight times in a row that you couldn’t stop? This can be a problem for some patients with ALS, and it’s made worse by the fact that due to weak jaw muscles they could dislocate their jaw.


That’s why I was particularly interested when a news report on PatientsLikeMe listed “increased yawning” as a symptom of ALS. It occurred to me then that we had in front of us the perfect way to investigate excessive yawning in more detail. The first step was to set up “excessive yawning” as a primary symptom in ALS, meaning that all new members would be rating whether they felt it was mild, moderate, or severe. Coincidentally, a paper had just come out which reported two patients (not with ALS) with excessive yawning after being prescibred an SSRI antidepressant drug. We now had a couple of different hypotheses we could test out; first that yawning in ALS was associated with respiratory funciton, second that it was associated with SSRI use, and third that it might be something to do with emotional lability. I took the new publication as an opportunity to write a letter to the editor on the subject. I wrote:

254 patients (47%) completed the survey on excessive yawning. Excessive yawning was reported to be absent in 75 patients (30%) mild in 75 (30%), moderate in 81 (32%), and severe in 22 (9%). Using Spearman’s Rho there was no correlation between severity of yawning and age (r = −0.63, P = 0.329, n = 244) months since diagnosis (r = −0.032, P = 0.619, n = 250), or the last recorded measurement of forced vital capacity (r = −0.136, P = 0.99, n = 148). There was no association between yawning severity and anti-depressant usage (χ2 = 3.269, P = 0.352). However, there was an association between yawning severity and site of onset (χ2 = 18.705, P = 0.028). Patients with a bulbar onset of disease were more likely (57%) to have moderate or severe yawning than patients with an arm onset (42%) or leg onset (31%).

So, from this data it looks like we can reject hypothesis one (breathing) and hypothesis two (SSRI use). But what about emotional lability? The reason I thought it might be a factor is that, much like uncontrollable laughter and crying, people yawned even when they weren’t sleepy and had difficulty with inhibition. Emotional lability is also found to be much more common in the bulbar-onset form of ALS relative to limb onset forms. Our own stats show a moderate but significant correlation between the two symptoms (r=~0.3) , and at the recent ALS/MND International Symposium in Toronto one of the speakers mentioned that they also consider yawning a sign of lability.

Why is all of this important? For one thing, the fact that yawning can be painful for ALS patients means we should try and stop it, but our discussions on PatientsLikeMe brought to light another reason entirely: people were losing friends because of it as they were intepreting their frequent yawning as a sign of boredom or rudeness! So, my interest now is for two things to happen; first for patients and healthcare professionals to be more sensitive to the presence of excessive yawning and clarify to patients that it can be a symptom, and second for researchers to investigate potential treatments that might target emotional lability and excessive yawning in order to improve the quality of life of our patients.