11 posts tagged “support”

“It gives me a source of hope”: Gloria’s 9+ years of tracking Parkinson’s disease and making connections on PatientsLikeMe

Posted May 24th, 2017 by

Member Gloria (sunshine221) has been here almost since the start. The Parkinson’s Disease (PD) community on PatientsLikeMe launched in 2007, and Gloria joined in 2008. We recently caught up with her about her early days with PD, how she has used PatientsLikeMe through the years and what she’s up to now.

Early days with PD and finding PatientsLikeMe

Gloria had been dealing with walking problems for four years, and was initially diagnosed with spinal stenosis. After having surgery for that, she was diagnosed with PD. She had to shift gears, in terms of finding support online.

“Another web board that I was using was great for the spinal stenosis but their Parkinson’s section was inactive,” she says.

 

“I liked PatientsLikeMe’s tracking sections and how it matched with what the doctors were asking.”

 

Gloria notes that HIPAA laws made it harder for doctors to connect patients with each other, so meeting people with PD online (and in in-person support groups) was key.

“PatientsLikeMe lets me share with people of similar age and illness progression, and when I might be feeling discouraged it gives me a source of hope,” she says.

Using PatientsLikeMe through the years

Early on, Gloria turned to the website for members’ drug evaluations (noting some frustration over the delay in being able to track Rytary XR – but that is possible now). Over time, she has used the site for tracking her own condition and helping others who’ve joined the community.

“I often look back at the historical data – sometimes it’s frustrating, other times encouraging,” she says. “I mostly look at my own data but if I’m trying to answer another poster’s question, I might look at their data to see what else might be happening with them.”

She has used her data to help people offline, too, including at her support groups. The wife of a local retired dentist with PD needed more information about the condition.

“So I gathered literature from my file and brought it up to her yesterday,” Gloria says. “This just shows that people from all backgrounds need education and support.”

Meanwhile, Gloria has continued to make strong friendships through the forums.

 

“The regular posters come to feel like family.”

 

Gloria says she has met up with fellow PatientsLikeMe members at the World Parkinson Congress in Montreal (2013) and Portland, Oregon (2016).

What’s she up to these days?

“It’s been over 10 years that I’ve had Parkinson’s,” Gloria says. “Looking back, I’ve been lucky that the progression has been slow.”

Gloria and her husband recently retired but continue to do some consulting work. They divide their time between their home in upstate New York, a winter home in Florida and a family retreat in the Catskill Mountains. She travels, exercises, maintains a personal blog, and even exhibits her work in art shows (top photo).

“My mantra is ‘use it or lose it,’” she says. In addition to encouraging others with PD to exercise and stay active, she also recommends: using a movement specialist, keeping legal documents (will, power of attorney, and healthcare proxy) in order, and educating adult children about the condition and its possible long-term progression.

Gloria fears her condition will get worse and her grandkids could be afraid of her PD (because she witnessed this with an aunt who had ALS), but she remains hopeful.

What brings her the most joy? “Spending time with friends and family, and watching my 2-year-old granddaughter learn – and hoping that there will be more grandchildren to come in the next few years.”

Share this post on Twitter and help spread the word.


Chris Hannah, founder of CHSG, talks cluster headaches, clinical trials and more

Posted June 29th, 2015 by

In the beginning of June, we posted about National Headache and Migraine Awareness Month, and today, we’re continuing the conversation with Chris Hannah, the founder of Cluster Headache Support Group (CHSG). He recently sat down for a PatientsLikeMe blog interview, and he spoke at length about everything related to cluster headaches. Below, read what he had to say about PatientsLikeMe, new drug treatments for cluster headaches and his own personal experience with “the worst pain he has ever felt.”

What do you feel is the most important information people should know about cluster headaches vs. other types of headaches?

First and foremost, if you are a cluster headache sufferer, it is important to know that you are not alone. It may seem that way since so many have never even heard of it and often mistake it as just another name for a regular headache. It is actually one of the most painful conditions known to medical science (you can Google that). It’s also not a form of migraine, it is a primary headache disorder but is quite different from migraine in many ways, especially given its odd periodicity where sufferers will have attacks at the same time of day, even the same time of year, over and over again. The pain is excruciating, typically centered around the eye on one side of the head. It also is accompanied by parasympathetic nerve response, causing tearing of the eye, eyelid drooping, running or blocked sinus, and ear ringing. It is quite disorienting when it occurs, and may occur 8 or more times in a single day lasting from 30-90 minutes typically. An attack may also be triggered at any time by consuming alcohol, chemical or perfume smells, second-hand smoke, and many foods.

For those who know someone diagnosed with cluster headache, please know that they are dealing with an insidious and debilitating condition. They are most likely under the guidance of a highly skilled neurologist who specializes in headache disorders. It may be hard for them to socialize as they did before onset, even with family and close friends, because they fear having an attack in public. Where migraineurs can lay their head down, cluster headache sufferers are unable to stay still, often including odd behavior like slapping their head or walking in small circles. This is not a conscious choice, rather the body’s way of dealing with the intensity of the pain. Please give them space but also your compassionate support. They are not looking for things to try that you may have heard about. They are probably experts in all options available to them as is the case with many chronic pain conditions and rare diseases.

How do you feel CHSG.org members might also benefit by becoming members of PatientsLikeMe?

I think one of the key benefits of PatientsLikeMe is codifying anecdotal data that all too often gets lost in the daily dialog of our support group. I think both are still very important, especially in terms of the experience and expertise of the community. Keep in mind that as a global organization, we benefit from the patients of some of the greatest minds in healthcare from all of the major headache centers, along with the many years of experience of many of the members. Although we have that information capital, turning that into quantifiable data for research can be quite challenging. PatientsLikeMe helps us translate each person’s experience with treatments, symptoms, co-existing conditions, and emotional well being into aggregated data that may help clearly identify new research targets, correlations to other disorders or demographics, even the number of patients who suffer similar disorders. It is done so in a positive way, helping the patient with excellent recording and tracking capabilities, even a doctor’s visit report. At the same time, it is helping to accumulate data over time across a diverse patient audience all living with the same disorder. We have a name for this ongoing data collection, reporting, research cycle, called SpiralResearch. We frankly see this collaborative approach as the future path of medical research for rare disorders in comparison to the onerous process of enrolling people in a point in time survey or one-off study that eventually gets published in summary as a document in hopes that someone will take it further, or better, correlate the results across many publications. We think there is an opportunity for greater synergy and insight in the process of continuous data gathering and analysis.

Do you have a personal cluster headache story you’d care to share with the PatientsLikeMe community?

I was in the prime of my career in the pharmaceutical industry when I initially encountered the worst pain I had ever felt. I was at a Harry Potter movie with my family and had to go straight to the emergency room. I truly thought I was going to die. It took six months from that point to get a diagnosis of cluster headache. Unfortunately, due to its rarity, approximately .3% of the population, even healthcare professionals are not all that familiar with it and may have never seen a case. I ended up getting a clear diagnosis first at the Jefferson Headache Center in Philadelphia and a second opinion confirmation from the Cleveland Clinic Headache Center. Until then, I was prescribed opioid pain killers which were largely ineffective. I was having on average 8 attacks per day interspersed with an ongoing baseline headache that made it hard to do anything. Of course, I didn’t sleep much either during that time and actually was housebound for most of the time, like I dropped off the face of the earth. That’s not easy for a man with a family, friends, a high profile job, and an avid golfer and outdoorsman. I had no idea such a thing even existed until I got it myself.

I searched out any and all information about cluster headaches. I found some online communities, but frankly, I did not like them much. They were full of people who were self medicating, self harming, and there were frequent issues of suicide. In fact, cluster headache is nicknamed the “suicide headache” because the effects are so profound on daily living. I decided there must be a better way, especially a way to work within the healthcare system, with pharma and other organizations to improve the quality of life and the resources available to cluster headache sufferers. There remain no preventive treatments specifically indicated for cluster headache although there are some partially effective off-label medications typically prescribed with varying results. For some like me who are chronic sufferers, finding relief is a long path. It is a life-long disorder, incurable currently. We hope to change that. In fact, since starting CHSG in 2010 and incorporating in 2012 as a 501c3 nonprofit organization, we have contributed to several new clinical studies and have even introduced effective treatment options through the headache centers we touch. We also offer a safe, compassionate place for sufferers to learn, share, connect, and engage with activities like our integration of PatientsLikeMe in our overall strategy of spiraling toward a cure.

In your opinion, what are the most promising drug treatments available to people suffering from cluster headaches? What about clinical trials—do you feel people with cluster headaches are good candidates for new drugs still in clinical trials?

We (CHSG) have most recently been working to trial ketamine infusion therapy in the hospital setting with excellent results that will, in fact, be published this year in Cephalgia and Neurology. Ketamine got a bad name from illegal street abuse, but in fact it is an approved, safe, and effective treatment for several neurological disorders, pain, and anesthesia. It is also opioid reducing, meaning it reduces dependency on opioid pain killers for chronic pain. Opiods are highly addictive and in the case of chronic pain conditions, often have diminishing efficacy, so people take more or seek stronger pain relievers. It’s not a viable path. Ketamine, on the other hand, is effective, non-addictive, and has a short half-life in the body. One of the most compelling effects of ketamine infusion therapy is based on neuroplasticity, meaning the brain actually has the opportunity to create new pain pathways, eliminating the “broken” and overexcited pathways common to chronic pain conditions. This is currently my primary treatment.

Another interesting avenue we are pursuing is that of TRP Channel antagonists, specifically TRP V1, A1, and M8. TRP channels are a basic mammalian sensory system that react quickly to certain noxious stimuli, including bright light, chemical smells, certain tastes like the hot in hot pepper, atmospheric pressure change and mild temperature increases. Interestingly enough, these specific stimuli are also the most common triggers for both migraine and cluster headache. There are several candidates currently in the pipelines of both biopharm and pharma as TRP channel antagonists. We do have some work to do to initiate evaluation for cluster headache and migraine and are actively in pursuit.

For many sufferers, there are viable medications that show efficacy at least for a time. Most do have to switch medications throughout their course due to taking relatively high dosage levels of “borrowed” medications primarily indicated for blood pressure regulation, anti-seizure, or serotonin gating. The high dosage levels prescribed for cluster headache introduce many side effects, including heart arrhythmia, low blood pressure, dizziness, severe fatigue, and even confusion. There are also two very good abortive approaches. Sumatriptan injection is effective for most, but limited to no more than 2/day and 4/wk which leaves quite a gap. High-flow oxygen at 12-15LPM also works for many and is quite safe with little side effect. Unfortunately, there is no complete solution yet for most sufferers.

How to you feel tracking or logging on to websites like ours is useful in terms of identifying headache triggers, learning about pain-management therapies, and moving researchers to find treatments for cluster headaches?

There simply can’t be too much real information, but making sense of it can be quite a challenge for the patient, especially in the mix of so much misinformation on the Internet. PatientsLikeMe and CHSG both help distill that information into a quickly understandable and informative format that is based on both experience and research. There is always more to learn, more options to consider, and new information coming from the ongoing collection of data across a wide base of users. Distilling that down into an easily digestible form is what PatientsLikeMe does best, in my opinion. It’s not just about patient tracking and learning about their own conditions, which is quite important; it is also about looking at the data across the patient base and identifying key commonalities and correlations that may not have been visible previously. This information is shared freely with all patients, ongoing. That “informing” process makes better patients, frankly, and puts the knowledge in their hands to help them better manage the dialog with their healthcare provider and others. It builds up the community both individually and as a patient group.

Share this post on Twitter and help spread the word for cluster headache.