14 posts from November, 2016

“When the wind turns against you, adjust your sails” – Member Steve opens up about living with ALS

Posted November 4th, 2016 by

Say hello to Steve (sheronemus), a member of the ALS community who also struggles with depression. We recently caught up with him to learn about how his life has changed since his diagnosis, the importance of doing what you love and how he manages multiple conditions.

Check out what he had to say about what helps him find peace and harmony while “living with ALS, not dying of it.”

Tell us a little bit about yourself. What are you passionate about?

I am a husband, father of 4 adult children, and grandfather of 2. I am all about making life better for others, especially for those living with disabilities. That involves consulting to our city administrator about accessibility, working with my national church organization to improve inclusion of people with disabilities into all aspects of church life including leadership, building an adaptive sailing program, and launching a company that provides affordable accessible housing units for sale or lease (www.roostsuites.com).

How has life changed since your diagnosis?

Living with ALS is obviously difficult, but I also have experienced many positive changes in my life. I have more time with my family and what I choose to do with my days is more aligned with my values. I have also stopped biting my fingernails!

In the forums you talk about the importance of doing what you love, like sailing. What do you like most about it, and what advice do you have for other pALS about following their passions?

I believe it is essential to find ways to enjoy those things that give you life, that uplift you. Always looking forward to something fun affirms that we are living with ALS, not dying of it.

I used to play many musical instruments, now we go to concerts. I grew up sailing, so I worked with industry experts to devise a way for functional quadriplegics to sail a boat on their own. This summer 5 pALS and 100 people with other disabilities were able to sail in our program. 4 of those pALS had never sailed before. It isn’t as hard as you might think, and we have great instructors.

Sailing is such a liberating sport. When living life in a wheelchair, mainly in a few rooms, the feeling of leaving the wheelchair on the dock and heading out into open waters, free to go wherever you want, is pure joy. It is also a great way to spend time with family and friends.

Sailing is all about working in harmony with nature to reach your goal. There is a saying among sailors “When the wind turns against you, adjust your sails.” I feel that is a perfect metaphor for living with ALS. We can’t change the wind, but we can still find peace and harmony. Sailing is good practice in finding that balance for me.

What’s it like managing multiple conditions?

Living with multiple conditions — for me, ALS and depression — is a daily exercise in a truthful self-evaluation of where I’m at, physically and emotionally. I’ve gotten much better at asking for help when I need it. We have found, too, that looking ahead to decisions down the road and staying mentally ahead of the diseases keeps us from feeling overwhelmed. Trying to make decisions in the middle of a crisis is a really bad idea for me.

 

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Behind the scenes of clinical trials: An interview with Dr. Ross Zafonte from Spaulding Rehabilitation Network

Posted November 2nd, 2016 by

Have you ever been asked to take part in a clinical trial? According to a soon-to-be-published survey on PatientsLikeMe, most of our members (2 out of 3) have never even discussed taking part in a clinical trial with their physician and only about 1 in 5 have ever taken part in a clinical trial. This is an alarming problem because the tools and technology at our disposal today leave gaps which must be filled by new innovations. There’s a risk that we continue prescribing medicine that doesn’t work as well as it should, or to people who will never fully realize the benefits.

Over the last few years at PatientsLikeMe, we’ve taken a new approach to help solve some of these problems. Well, it’s actually not new to us at all, but it is novel for the industry: build trials based on the patient perspective. We partner with leading life science companies and help them understand what matters most to patients in clinical trial design by going directly to the community for their opinion. Listening to what patients have to say can help with trial recruitment and retention, which you’ll read more about in just a minute.

For more insight, we sat down with Dr. Ross Zafonte, Senior Vice President, Medical Affairs Research and Education at Spaulding Rehabilitation Network. Below, Dr. Zafonte shares some of the common roadblocks to successful trials, how he thinks trials will evolve in the future, and the scoop on a study about traumatic brain injuries that’s currently in the works.

 

Can you tell us a little about Spaulding Rehabilitation Hospital and the work being done there right now?

Spaulding Rehabilitation Hospital is a rehabilitation facility in Boston, MA with a nationally renowned reputation for care and research. We focus on clinical care of those with disability, education for healthcare professionals and medical students, and research to advance the field of rehabilitation. Spaulding specializes in brain and spinal injury (including stroke), treating people who have suffered amputation or burns, rehabilitating athletes, and children in need of physical rehabilitation. The facility includes a residency program to train students and doctors and produces some of the country’s leading innovative research for people with disability.

How many clinical trials have you run throughout your career and what do you think makes a successful trial?

Between 12-15 clinical trials including the use of drugs to help with memory problems following traumatic brain injury, the use of robotic-aided physical therapy in stroke, and a study to see whether drugs used to treat ADHD might also be useful in those with TBI & PTSD. For me, a successful trial yields a definitive answer in either a negative or a positive; does the new treatment work or not? While a lot of focus is given to new treatments that seem to be an improvement, I like to remind people that much is learned through finding a negative answer…or rather, finding what doesn’t work.

What are some of the most common challenges you’ve seen for researchers running clinical trials?

A major problem in clinical trials today is patient enrollment. People are worried and reluctant to enroll, because they worry about the burden imposed upon them and their caregivers by the number of visits to clinic and how much time it will take out of their life. There can also be issues with fear of being placed on placebo; why should they go through all this inconvenience to take part in research when they might be getting a sugar pill rather than a new therapy? Some people take issue with the fact they might be randomized into a control group, but this remains a key part of how we design trials and it’s hard to get away from the fact we need control groups and perhaps no treatment groups to better understand the placebo effect.

Another issue is retention. When their doctor asks them in the clinic they might have some initial enthusiasm to participate but as the trial goes on for 3-, 6-, and 12-month follow-ups, that enthusiasm can wane. We have to figure out how to get people to sign up and stay in.

What effect can these challenges have on research?

To find out if a new treatment works we have to test it on a lot of people, because there is so much variation between patients, a small effect can be hard to detect. If we cannot enroll enough people in clinical trials or find what works or what doesn’t work it’s really going to be hard for us to innovate and have new treatments to offer patients. This work affects everyone: you, your family,your neighbor, your friend, your coworker.

What would you suggest as some solutions to these roadblocks?

People need to understand the potential benefits of taking part in research and what they are giving back to the community. I hope that raising awareness and education would enhance trial recruitment by showing volunteers that they are leading to new discoveries that will benefit patients like them.

How do you think clinical trials will continue to evolve going forward? What are your hopes for this?

To help speed recruitment and ensure that trial findings apply to as many people as possible, trials may increasingly need to be conducted in multiple countries. I hope that regular use of services like the free clinical trials finder on PatientsLikeMe (https://www.patientslikeme.com/clinical_trials) might help people find out more about trials for which they might be eligible. Finally I’d like to see the results of published research made more widely available to enhance the public’s understanding of trials.

Can you tell us more about your current trial for improving learning and memory in traumatic brain injury?

People with TBI often complain of issues with their cognitive function, which can show up as problems with memory, language or impulsive behavior. Huperzine A is a dietary supplement derived from Chinese Club Moss that might help with cognitive function and lower the risk of having seizures. We are running a new trial to test whether we can see those potential effects on memory in a treatment that could be reasonable and affordable. Which should also be easily made available to patients if it’s found to be effective.

If Huperzine A works, we’re also hoping the study will reveal whether this supplement is safe, who benefits from it, and whether it’s a cost-effective treatment option. We’re on the lookout for potential volunteers right now, although it can be difficult because the inclusion criteria state that people’s traumatic brain injury must have occurred within the past year. Also, we know some of the symptoms of TBI can make it problematic to volunteer for trials because the patient might not fully understand that their cognition issues are as severe as they have become. They may require someone like a spouse or family member to point this out or support them in coming to their appointments.

Since we are looking for volunteers right now, you can find more information on this trial or to see if you or someone you know might be eligible, please contact Laura Burns, MBA – TBI Research Enrollment Coordinator at lburns2@partners.org or 617-952-6192.

 

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