4 posts tagged “researcher”

Confessions of a research study addict: “It’s powerful to use a devastating diagnosis for good.”

Posted March 14th, 2018 by

Elizabeth is a member of the 2018 Team of Advisors living with MS and a self-described research addict. Here’s what she had to say about her experience contributing to research and why “it’s powerful to use a devastating diagnosis for good.”

I’ve always been a sucker for a focus group. Give me some free pizza and I’ll tell you everything you want to know about your product, service or ad campaign. In fact, I got into advertising as a career because I liked the research part of it so much.

So, when I was diagnosed with multiple sclerosis, I applied that same mindset to my disease approach.

The first MS research study I did came a few months after my doctor prescribed Avonex. For someone with a virulent needle phobia, a weekly intramuscular shot sounded almost worse than having MS. So I spent the next few months imagining myself on a beach—right before I tried in vain to push an inch-and-a-half needle into my leg. The meditation didn’t quite take, but my passion for research didn’t waiver (thank goodness for a husband who didn’t mind giving shots and, later, the Avonex quick inject pen!)

Next came the EPIC Study — “an intensive observational study of over 500 people with MS who have been carefully studied since 2004.” I even got my parents involved as a control group. Once a year for twelve years I’ve been getting evoked potentials, an eye screening, a hand-eye coordination exam, and a bonus MRI — I also play a dreaded number addition memory game. I’m proud to be part of this study—last week I was lucky enough to see some of the preliminary findings that I contributed to (hint: there is some AMAZING stuff happening in the MS therapy world.)

I made a brief, but unsuccessful, journey into a Copaxone clinical trial where I had the honor of getting lipoatrophy faster than any patient my doc has ever seen. My case even made it into a medical journal. And while the dents in my thighs never let me forget this one, I like to think my experience helped someone else avoid their own unseemly dents.

My research obsession doesn’t stop with MS. I fit a patient profile for a breast screening study to determine if mammograms alone or with a DNA test can improve outcomes for detecting early cancers. I was happy to be a part of this work, plus I learned I don’t have a carrier gene—a nice bonus of helping out.

Yes, health studies are a bit addictive to me. I get a thrill from trying a new approach or having my data contribute to a new protocol. And while there are different levels of research (especially when it comes to drug trials), every observation, every data point moves our collective understanding about MS and chronic illness forward. I’m grateful to play a role in that; it’s powerful to use a devastating diagnosis for good.

So, what’s next? The other day I heard about an MS gut microbiome study. The details are…a little gross. But sign me up!

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World Parkinson’s Day: Meet Eileen, a PatientsLikeMe researcher with a passion for PD

Posted April 11th, 2017 by

Researcher Interview on Parkinson's Disease

Today is World Parkinson’s Day, and 2017 marks the 200th anniversary of the identification of Parkinson’s Disease (PD). Meet Eileen Mack Thorley, a research scientist with a passion for PD research. By day, she works on a variety of research projects at PatientsLikeMe. On her own time, you might find her doing FaceTime with her dad to help him practice his physical therapy exercises for living with Parkinson’s. He was diagnosed with PD more than 10 years ago.

Eileen said her father’s PD diagnosis inspired her to get involved with the Team Fox Foundation Young Professionals of Boston (part of the Michael J. Fox Foundation), and ultimately led her to venture into PD research as part of her day job.

Eileen has a master’s degree in public health and specializes in epidemiology, data analysis and public health research. She has been working in the field for 8 years, previously focusing on the areas of substance abuse and maternal and child health.

“Where I want to be now is focusing on Parkinson’s research and community health – living with the disease and bringing the patient experience into research,” Eileen said. In addition to a focus on traditional medical breakthroughs in Parkinson’s research, she has a personal interest in the area of complementary therapies for PD management – especially music and relaxation. “There’s a growing body of research on the benefits of relaxation.  How can we better understand and apply these benefits as part of disease management?”

Eileen attended the 4th World Parkinson Congress in Portland, Oregon, this past fall and wanted to share some highlights from the conference.

What was it like to attend the World Parkinson Congress as both a researcher and a family member of a person living with PD?

On a professional level, I was excited for the opportunity to attend this conference to expand my current understanding of the latest in research and medical advancements with the aim of applying new insights to our research. The conference brings together researchers, health care practitioners and patients living with Parkinson’s around the current state in Parkinson’s research, science and care.

Personally, it was also a meaningful experience to me to have exposure to this conference and community as I have a family connection. My dad has been living with a Parkinson’s for over 10 years.  Parkinson’s certainly has had a profound impact on our family and it’s difficult for me to adequately express how important improved care, treatment and any discoveries that improve daily life are to me.

Could you walk us through an overview and some highlights of the conference? Did the conference feel patient-centered? How so? 

Over 4,500 attendees from 67 countries were present, including over 2,000 patients living with Parkinson’s, their care partners, and family members. It was encouraging to reflect on how many people are working on different ways to make life better for those living with Parkinson’s with an ultimate eye toward a cure.

 

“Being in a huge convention space filled with physicians; care providers; non-profits; clinicians; scientists who dedicated their lives toward care, research and support in Parkinson’s – alongside others who experience this disease first-hand in daily life – was truly powerful and humbling.”
–Eileen on attending the 4th World Parkinson Congress

 

From my view as both a researcher and a family member, I appreciated that there was a combination of technical discussion on the latest in treatments and research along with a presence of the patient voice and experience. After a plenary discussion on the latest in deep brain stimulation (DBS), including ultrasound as a developing, non-surgical approach (albeit mainly for tremor, including other caveats), there was a presentation from a patient named Andy McDowell who went through DBS and he shared his story. Some of the other research themes included wearables and apps to track movements; immuno-therapeutic approaches and targeting alpha-synuclein (this was a particular focus in drug development as it could be helpful across a range of conditions including but not limited to Parkinson’s); and genetics research (primarily on the LRRK2 gene).

I appreciated that the conference highlighted non-drug and complimentary therapies in addition to medical care including a focus on exercise, relaxation and wellness services for patients; the conference included a “Wellness Way” section where patients could sign up for massage, reiki, yoga (‘yogadopa’), boxing (with Rock Steady Boxing), singing/vocal exercises, dance, breath-work and more.

 

“I sat in on one of the wellness sessions to observe with the aim of picking up any insight to share with my dad. An atmosphere of support among patients was palpable and touching.”
–Eileen on the wellness sessions at the WPC

 

All together, these elements helped set a nice tone for the conference – research and applied practice; clinical care and daily life once you are home and no longer in the doctor’s office.

What were some of your biggest takeaways from the conference? Can you apply anything you learned at the conference to your job at PatientsLikeMe? 

While the conference highlighted many of the advancements and the current work is promising, we know much more work is needed. There is a large community and network of efforts around care and research, and we all have a role to play. The conference underlined the importance of bringing the patient voice to technical research and these projects. There are so many unknowns. There’s so much we need to learn from your experience.

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