4 posts tagged “emotional lability”

How Social Media Is Changing Research (Part I): A Guest Post by MS Clinical Trial Participant and Blogger Jeri Burtchell

Posted September 12th, 2012 by

Today’s guest post is written by PatientsLikeMe member Jeri Burtchell (TickledPink), who has been living with multiple sclerosis (MS) for 13 years.  A tie dye apparel store owner and mother of two, she writes a blog entitled “Gilenya and Me:  My Story of Being an MS Patient, a Hypochondriac and a Guinea Pig.”  Her patient advocacy and social media presence led to her being invited to speak the Disruptive Innovations conference taking place in Boston this week.

MS Patient, Blogger and Activist Jeri Burtchell (TickledPink at PatientsLikeMe)

One rainy day in April 2007, I was lying in bed, staring at the ceiling, talking myself out of suicide. I was having another MS relapse. This time it was attacking the part of my brain responsible for controlling emotion. As a result I was having panic attacks almost daily. Along with the emotional issues, I was also having trouble walking and horrible spasticity.

I had been diagnosed with MS for eight years at that point and, although I was on one of the FDA approved treatments, I was continuing to relapse three to four times a year. It felt like standing in the ocean; every time I would stand up and catch my breath, another “wave” of MS knocked me back down.

Deciding against suicide, I made some proactive choices that led to my meeting with the lead investigator of the Fingolimod (now marketed as Gilenya) clinical trials in Jacksonville, Florida. At my first appointment we discussed the Fingolimod trial called TRANSFORMS. I took the informed consent document home and went over all the risks and benefits with my family. After extensive baseline testing, I officially started the trial on August 20, 2007, a.k.a. “Randomization Day”, when I received my first dose of medication. I would return for regular testing many times over the next several years.

Joining the trial changed my life. I was very fortunate that I did not suffer any major side effects, and I am happy to say that my last MS attack to date was the very one which led me to contemplate suicide that day in April 2007.

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I was fascinated by the research during the trial. They did a lot of testing, and I have never felt more assured that my overall health was being tracked, observed and cared for as I did in the clinical trial. Since I did not have medical insurance, this was a plus on top of benefits I might be getting if on the real drug.

When the trial began, I wanted to know what to expect. I tried searching the Internet for a clinical trial from a patient’s perspective and could find nothing. I decided to share my experience with the world so others considering a trial might have their own fears put at ease. Thus my blog, www.gilenyaandme.com, was born.

I blogged all of my checkups and along the way something unexpected happened. Many people wrote to thank me for being the reason they felt able to overcome their own fears and join a clinical trial. We began connecting and sharing our personal experiences in a way only the Internet could enable.

Read Part II of Jeri’s guest post!


“A Mile and a Candle” for World MSA Day

Posted October 3rd, 2011 by

Today, October 3rd, is World MSA Day.

MSA stands for multiple system atrophy, a degenerative neurological disorder that causes symptoms similar to Parkinson’s disease. As a result, it is included in a group of diseases called “Parkinson-plus syndromes,” which have the classical symptoms of Parkinson’s (such as tremor and stiffness) as well as additional physical and mental features. In addition, these diseases typically do not respond to Parkinson’s treatments.

Walk a Mile Today for World MSA Day 2011

The theme for this year’s World MSA Day is “A Mile and a Candle.” All around the globe, MSA activists will be lighting a candle today at 8:00 p.m. local time for one hour. Participants are being asked to light a candle for each person they know who is living with MSA or has been lost to MSA. As candles are lit across every continent, a virtual 24-hour wave of light will be created as it moves from time zone to time zone.

In addition, activists will be walking a mile (or more) in honor of MSA, then reporting their mileage on the “A Mile and a Candle Counter Page.” The goal is to tally enough miles from enough participants to equal 24, 901 miles, which is the circumference of the earth at the equator. If this goal is accomplished, MSA Day supporters will have “walked around the earth” to raise awareness of this little-known disease.

Here at PatientsLikeMe, 485 patients report MSA, with 54% of them female and 46% of them male. The most common age bracket reported is 50-59 years of age, while some of the most commonly reported symptoms include excessive daytime sleepiness, sexual dysfunction, emotional lability and bladder problems. Get to know our MSA patients today and, if you can, light a candle or walk a mile in their honor.


PatientsLikeMe @ The 20th International ALS/MND Symposium in Berlin

Posted December 21st, 2009 by

The 20th International Symposium on ALS/MND took place (December 8th-10th) in Berlin, Germany. This is the 4th ALS Symposium attended by PatientsLikeMe, and certainly the most exciting in terms of new findings. The annual symposium is a tremendous opportunity for researchers from around the world to meet and share new developments – it’s the big event for the ALS research community and attracts scientists from across the globe.

PatientsLikeMe Chairman and Co-Founder Jamie Heywood and Research Scientist Timothy Vaughan, PhD presented three posters at the conference with some of the findings we’ve generated this year. The highlight was a poster describing our analysis of the patient-led study of lithium carbonate. Using new techniques that compared patients on lithium to carefully matched control patients, we determined that the drug had no effect on the progression of ALS. The poster was well received with good feedback from experienced experts in the field, and we are currently working on writing up a full analysis and description of our techniques.

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Our second poster described a small survey we did about emotional lability, also known as pseudobulbar affect (PBA). We found that although many ALS patients suffer from unusual or uncontrollable outbursts of laughter, crying, or anger, patients aren’t discussing these episodes with their physicians.

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Finally, we presented preliminary results from our Familial ALS Genetics Study. About 20 patients have told us about ALS-causing mutations they have, and so far, the data closely resembles other findings reported in the scientific literature. The PatientsLikeMe difference is that patients who know their mutations can find and connect with other patients like them for the very first time.

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We’d like to thank our research team for all their hard work this year. And of course, we’d like to thank our patients for sharing their data and making each of these studies possible. Here’s to further understanding and continued breakthroughs in 2010!

PatientsLikeMe member jheywood PatientsLikeMe member pwicks PatientsLikeMe member tvaughn


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.

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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.