11 posts from January, 2016

CHSG founder Chris Hannah shares how he tracks cluster headaches on PatientsLikeMe

Posted January 25th, 2016 by

In an interview last June, Chris Hannah, the founder of Cluster Headache Support Group (CHSG), discussed his experience with and thoughts on cluster headaches, clinical trials and more. We recently caught up with Chris to learn how he uses PatientsLikeMe to manage his condition, and the advice he gives to others living with cluster headaches.

1. Chris – we’re so happy to have you as a member of the PatientsLikeMe community. How did you first hear about PatientsLikeMe, and what prompted you to join?

One of our board members, Anita, actually met a PatientsLikeMe representative at a pharma event in Philadelphia. At the time, we were working on a collaborative effort to establish a new patient registry for Cluster Headaches. Frankly, we try to avoid involvement in product development and especially support as that is not our primary function as a non-profit patient-centered organization. Anita raised PatientsLikeMe as a possible better path for that purpose and also for ongoing data collection which was another key objective for us. We set up a meeting right away and found immediately a willingness to work together utilizing the great platform PatientsLikeMe had already developed. The fit was not 100%, but it was close enough and we have been able to easily work around any gaps that did not fit our original requirements. The PatientsLikeMe team has been awesome! We meet regularly and it has become a truly collaborative partnership. We are meeting our needs without the pain of software development and maintenance, and in fact, enjoy the benefits of having an excellent partner in the industry. The PatientsLikeMe platform is robust, flexible, and well-supported. It was a great directional change for CHSG.

2. You’ve told us you use PatientsLikeMe to track your cluster headaches. Can you tell us more about how the site helps you manage your condition?

When we first looked at PatientsLikeMe for managing cluster headaches, it seemed to not match some of the ways we track headaches, such as multiple headache types with multiple incidences per day to track, both good and bad. There is a daily reminder asking how you feel today, and that was a huge benefit…a daily reminder to log our headaches. However, daily is just not frequent enough. Many said it won’t work for headache tracking at first, but what we realized pretty quickly is that there is no limit on the number of entries that can be made in a day. Simply by using the PatientsLikeMe tool, we could quickly – with one or two clicks – log every single incident and also track when we were feeling better. Both are important. We did a test with a small group of cluster headache sufferers to try it out. What they all found was that it worked very well to log each and every headache, pain free times, and even medications taken. The graphs were very telling and some even began to see specific patterns in their day they were not previously aware of. It helped them to adjust their medication timing and actually improve their overall condition.

3. How does the Doctor Visit Sheet (DVS) help keep your doctor up-to-date with what’s been happening in between your visits?

The Doctor Visit Sheet has proven to be a highly valuable tool and is very well received by neurologists at what are typically infrequent visits. They can see the entire history over the prior months including pain tracking, symptom changes, medications, etc. This is a critical component in ongoing treatment plan adjustment for cluster headache and migraine which still do not have effective preventive medications. Medications are often adjusted, new medications tried off-label, etc. With the Dr. Visit Sheet, it is a more informed decision process, and honestly, a better dialog between patient and doctor.

4. What advice would you give others who are living with cluster headaches and are looking for ways to better manage their condition, and connect with others living with cluster headaches?

First and foremost, don’t go it alone. We have great resources and patients just like you to bounce things off of, rant, cry, or shout about being pain free. No one else truly understands your pain or the life you live, but other sufferers truly get it. Join us at chsg.org and PatientsLikeMe! Information, discussion, support, and new research initiatives are all available to you, and you WILL find ways to better cope and reduce the impact of this debilitating condition on your life.

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“I try my best to make the most of each new day”– An interview with ALS member Brian

Posted January 22nd, 2016 by

Brian (Dunric) is a former game developer and has been living with ALS since 1998. Unable to find a local ALS support group where he lives in Lodi, CA, he discovered PatientsLikeMe in 2012.

In a recent interview, Brian opened up about dealing with the uncertainty of his condition the best way he knows how — with a sense of humor. Here’s what he had to say …

1. Tell us a little about yourself.

I’m your average nerd who refuses to grow old, despite being 41 years old now. Diagnosed so many years ago and not having close family ties was rather trying on me. I’ve had my share of nursing home nightmares and some caregivers that made me feel like family.

Some of kids I’ve known and helped raise over the years now have children of their own. It seems like the world changes but I do not. I try my best to make the most of each new day, and it feels the proper way to accept life with ALS.

2. In your profile you write, “Many trials and tribulations of ALS have pushed me to limits that I have never thought of before.” Can you describe some of these experiences, and how your life has changed since your diagnosis? 

I have gone through some situations that doctors never thought I’d survive but the worst of it all was accepting the fact that ALS would be part of my future. Not really knowing just what was going to happen or expect. It’s that uncertainty that can drive anyone absolutely mad. Having once the illusion of absolute control and then having that revealed to me that control is an illusion was a very hard thing to accept.

There was a moment when I had my first PEG placed that the doctors (prefessionals as I call them) that I had informed them of feeling a “pop” sensation when PT wanted to have me sit up on the side of my hospital bed. Later that evening a licensed nurse had started a feeding session without checking patency. Hours later I had already had the beginning symptoms of Acute Peritonitis, all from the formula being introduced and me feeling a burning sensation.

The following afternoon I was put into a CT scanner and shuttled up for emergency exploratory surgery. The surgeons never thought I would make it after a pulse of over 180 and my body in writhing pain. After several months I had recovered but had to have my tube surgically placed along with relocation of my stomach to prevent a recurrence of such a catastrophic disaster.

3. Your sense of humor shines through in many of your posts. What advice do you have for others on keeping a positive outlook?

In my past I have had major anger issues and learned (on my own) how to channel and let go of such negative energy. I used to hop in my car and just go for a drive to unwind. Being no longer an option, the best way I have of releasing anger, fear, and such discomfort has been through humor or making light of some of the worst situations I’ve been in (in a tasteful manner of course).

Such an example was during the long hospital stay I had was the wonderful view out my window of a cemetery. I asked my doctor “If I’m not going to make it, at least it’s a short trip next door don’t you think?” It was kind of a morbid view when recovering in your second month of madness. Best to make the most of it since it was all I had at the time.

4. What has your experience been like with PatientsLikeMe? What keeps you coming back to the site?

I discovered PatientsLikeMe when trying to find an ALS support group of which this town has nothing of the sort. So an idea came up. Google has all the answers. (Siri on my phone came up with more odd results … let’s just say not G -rated support groups.)

Having no close family really makes ALS quite a challenge and I wanted to meet others in some way to compare notes, tips, tricks, and the occasional rant once in a while as ALS is such a trial on me to face alone. Having no car, nobody to help comfort my pain and frustrations. People here listen and I was surprised just how many lives I touched and look forward to reading my next update.

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