4 posts from July, 2007

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 or Constant 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.

Excessive Yawning - Constant Yawning

 

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.