7 posts tagged “Steve”

Throwback Thursday: Dr. Steve Feldman speaks about psoriasis and medication adherence

Posted August 6th, 2015 by

In honor of Psoriasis Awareness Month, we’re throwing it back to January 2013, when we sat down with Steve Feldman, MD, PhD, and Professor of Dermatology, Pathology & Public Health Sciences at Wake Forest University School of Medicine. In his interview, he spoke about the challenges for psoriasis patients, as well as the treatment advances that may be ahead. We’ve reposted his entire interview below so you can learn about his research studies on patients’ adherence to topical treatments.

As the founder of DrScore.com, tell us how rating doctors online can improve medical care.

Doctors want to give their patients great medical care. Online ratings can help by giving doctors the feedback they need to know—from patients’ perspectives—such as what the doctor is doing well and what the doctor can do to enhance the quality of care in their practice. www.DrScore.com was designed to help facilitate that feedback while also giving patients a better picture—more transparency—of the quality of care physicians provide, something that wasn’t nearly so easy to do in the pre-Internet era.

What do you think about PatientsLikeMe’s data-sharing platform and openness philosophy?

PatientsLikeMe does a truly wonderful job taking advantage of the capabilities of the Internet to permit data sharing among patients so they can learn from one another. Another extraordinary accomplishment has been to develop ways to combine that data in order to better understand diseases and the benefits and risks of the treatments for those diseases. Openness is a terrific attribute in this Internet age. I am very optimistic about medicine and health care providers and think there’s nothing to hide (and if there were something to hide, it ought to be exposed)!

You’ve done extensive research around treatment adherence. What are the considerations for patients?

Well, as the former Surgeon General put it, medicines don’t work if patients don’t take them. Taking medicine isn’t easy, unless it is a habit. And when a patient starts to use a new medicine, taking it isn’t a habit. Patients forget their medicine, they may be fearful of their medicine, there are just all sorts of reasons why patients don’t always take their medications. I think coming up with a plan, a system, for remembering is helpful. (I keep my own pills in a seven-day dispenser on the dinner table, which works great for me except when my family goes out to eat).

If patients are fearful, they should have an honest discussion with the doctor about it. One thing is certain: patients should be honest with their doctors about how they use their medicines. It does neither the patient nor the doctor any good for the patient to tell the doctor one thing but do something else. If a doctor does prescribe a medicine that the patient thinks is too costly or too risky, the patient should let their doctor know. The doctor wants to know and may be able to change things.

We have a growing psoriasis community. What challenges do psoriasis patients face?

Psoriasis has a huge impact on patients’ lives. It affects how patients perceive themselves, how other people perceive the person who has psoriasis, and, in many cases, how someone with psoriasis thinks they are perceived by others. The lesions aren’t just unsightly; they can be itchy and painful. The condition is caused by an overactive immune system, which can also result in arthritis and increased risk of cardiovascular disease and depression. There are good treatments, but the treatments have their downsides: they may be costly, inconvenient, messy, and risky. One of the biggest challenges is getting educated about all the potential options. It isn’t easy.

In our forum, patients have been discussing whether diet can affect psoriasis. What’s your take?

Well, I don’t know of any particular dietary issues that have been definitively shown to affect psoriasis one way or the other (except perhaps that starvation temporarily improves the disease, probably by inhibiting the immune system). But if a particular patient finds some particular dietary issue that makes their psoriasis worse (or better), they should eat accordingly. Some patients tell me beer and/or wine makes their disease worse or that avoiding gluten has helped. The PatientsLikeMe platform may be helpful in compiling the experiences of many people to see if these are issues for individuals or could truly help patients in general.

Any thoughts on what’s ahead in terms of psoriasis management and treatment advances?

As our understanding of the immune system improves, scientists at drug companies will be developing newer and perhaps better ways of controlling immune diseases, including psoriasis. As our health care system changes to become more cost conscious, there may be greater reliance on low cost treatments, like generic creams and ointments for people with mild disease and more use of phototherapy for people with more severe involvement. And with better data collection—like with PatientsLikeMe—we may develop a better understanding of what works, what doesn’t work, and what risks and benefits our treatments have.

If you’re living with psoriasis, don’t forget to connect with the more than 5,000 members of the psoriasis community at PatientsLikeMe.

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Getting to know our Team of Advisors – Steve

Posted May 29th, 2015 by

A few weeks ago, Amy shared about living with a rare genetic disease in her Team of Advisors introduction post. Today, it’s Steve’s turn to share about his unique perspective as a scientist who has been diagnosed with ALS. Below, learn about Steve’s experience with ALS research, his views on patient centeredness and what being a part of the Team of Advisors means to him.

About Steve (aka rezidew):
Steve is a professor of Developmental Psychology at the University of North Carolina at Chapel Hill. He was diagnosed with ALS in the fall of 2013 and his symptoms have progressed with increased debilitating weakness in his arms and hands. He was excited to join us as an advisor to lend his expertise on research methodology to the team. He has authored or coauthored an impressive 6 books, 91 peer reviewed publications, and 26 published chapters. When we talked about giving a background on research methods to the team, Steve said ‘I can teach it.’ He is passionate about helping teach others and believes “as a scientist who has been diagnosed with ALS, I regret having this disorder but I am eager to use my unique perspective to promote and possibly conduct relevant research.”

Steve’s view of patient centeredness:
“The obvious perspective is that patients should have some voice in decisions regarding what research should be conducted, what the participants in research should be expected to do, how participants in research should be selected, and how results of research should be communicated.”

Steve on being part of the Team of Advisors:
“Being a member of the Team of Advisors has helped me understand a wide array of perspectives on patient-centered research based on my interaction with fellow patients who have various health problems and who have various levels of knowledge about research. I am impressed with the consensual consolidation that has emerged from the Team’s dialogue about research.”

Steve’s experience with bibrachial ALS and research on ALS:
“A diagnosis of ALS can be associated with several different configurations of symptoms. Some PALS (Patients with ALS) begin with problems in their feet and legs, some begin with difficulty talking and/or swallowing, and some, like me, begin with weakness in their hands and arms. Also, some PALS start relatively young and have other PALS in their family. And, some PALS have dementia. We all lose our ability to breathe eventually and our array of symptoms broadens, but our initial experience can be very different. I am surprised and disappointed that the medical community has not done more to identify our subtypes and to track our progression within our subtype.

Developing a PALS taxonomy would help doctors provide support to PALS that is most relevant to our needs. It would also help us share our experience with fellow patients and learn from each other. An ALS taxonomy would also be extremely relevant for research on treatments. Ongoing research on ALS using rodents with SOD1 mutations may yield an effective treatment someday, but for now PALS would feel more supportive of this research if it used models that reflect the different taxonomies of ALS. We would feel even more supportive if more research allowed us to participate in studies that focus directly on medicines that could help our ongoing progressive terminal illness.”

More about the 2014 Team of Advisors
They’re a group of 14 PatientsLikeMe members who will give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients like them. They’ve already met one another in person, and over the next 12 months, will give feedback to our own PatientsLikeMe Research Team. They’ll also be working together to develop and publish a guide that outlines standards for how researchers can meaningfully engage with patients throughout the entire research process.

So where did we find our 2014 Team? We posted an open call for applications in the forums, and were blown away by the response! The Team includes veterans, nurses, social workers, academics and advocates; all living with different conditions.

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“Perseverance, patience and acceptance” – PatientsLikeMe member Steve shares what it’s like to live with MND

Posted November 14th, 2014 by

Those three words describe how PatientsLikeMe member Steve says he has adapted to life with motor neuron disease (MND). He was diagnosed with MND (also known as ALS) in 2007, and technology has helped Steve navigate the challenges of living with ALS while raising three children. He’s also made a video about his journey, called “Motor Neuron Disease Made Easier.” Steve spoke with us about the decisions that come with a MND diagnosis, the inspiration for his film and “how adaptable one can be in the face of adversity.” Read more about Steve’s story below and head to his blog to watch his film.

Looking back over the last 7 years since your diagnosis with ALS/MND, is there anything you’d like to have known sooner that has helped you along your journey?

I think I was fairly pragmatic about researching the condition from the outset, so there haven’t been many surprises apart from the fact that I am still here 7 years later (and I just realized it’s actually 7 years to the hour as I write). One of the difficulties with the disease is the uncertainty of the rate or nature of its progression. There is so much equipment, mostly hideously expensive, that you will need if you want to mitigate the effects of the disease – wheelchairs, hoists, adapted vehicles, communication aids, modifications to your home, the list goes on. But if you don’t know how long, for instance, you will be able to use a standing hoist, you can’t assess whether it’s worth spending the £2000 (about $3,000USD) on one. I know there’s a degree of uncertainty with the prognosis of many illnesses but I can’t think of another which comes close to the complexity of MND.

You’ve documented your experiences in your film “My Motor Neuron Disease Made Easier” – can you share a little about your inspiration for the project?

The thought of having MND without the internet is terrifying. The amount of information available regarding equipment and solutions to our multitude of challenges is staggering. However there aren’t many websites, which bring everything together. And many have information without presenting it in a real world context. So I thought that a video demonstrating most of the equipment I use would be a simple and quick way for fellow sufferers to see what’s available, but more importantly seeing it being used. Furthermore, I have realized that for many issues there simply isn’t an off the shelf solution. And in my experience many of the healthcare professionals just aren’t very creative, so I wanted to share my ideas like the chin support, heel pressure reliever and hoisting techniques to others. Having made the video, the filmmaker, Bernard, wanted to expand the idea to how MND impacts on a family. Then finally I wanted a sixty seconds version, which could be potentially used as a hard-hitting awareness campaign. The 3000-word narrative took several days to type using eye movements, but I am proud of the results.

How has technology helped you cope with the impact of ALS/MND? Is there anything you can recommend for PALS who might not be as comfortable with technology?

Technology has undoubtedly made coping with the disease far easier. Having had over 20 years experience in IT, I appreciate that I am better equipped than most to adapt to new technology. But you really don’t need any technical ability to use an eyegaze system for communication purposes, which is the most important benefit it offers. Actually, initially I only used it for this purpose. It was only after I got more confident with eye control that I ventured out of the easy environment of The Grid 2 software and started using Windows directly. I am now able to do anything anyone else could do with a computer. It also allows me to participate with family life as I am able to control all the computers and network devices in the house, which means I can sort all the problems out. I am even in the process of buying a house using my eyes.

I arranged all the viewings, negotiated the price, organized quotes for adaptations, dealt with solicitors, scanned necessary documents, bought hoists and other equipment on Ebay, arranged dropped kerbs for wheelchair access with the council and will hopefully move before Christmas. The only thing my wife had to do was choose the sofa! So almost anything is still possible.

Your blog is testament to your incredibly busy family life! Being a father of three boys, what impact has ALS/MND had on your approach to parenting and family life?

I have to say that the impact of MND on my abilities as a father has been the hardest thing about this disease. My triplet sons were 6 years old when I was diagnosed and I was confined to a wheelchair by the time they were 8, and when they were 9 I could no longer talk to them. They are now nearly 14 and I am grateful that I am still here but we have missed out on so much, both physically and through communication.

The most obvious impact are the physical restrictions. Almost every activity that a parent enjoys with their kids has been denied to me, from kicking a ball around in a park to giving them a hug. But maybe a more important loss is that of communication.

Eyegaze is undeniably an incredible means of communication but it’s certainly not conducive to flowing conversations. Ten-year-old boys aren’t very interested in waiting around while you laboriously construct a sentence, especially if they think it’s finally going to read “no xbox for a week”! Trying to teach something using eyegaze or trying to discipline using eyegaze is at best frustrating and ineffective respectively. That’s not to say I don’t try but these are two of the most important roles of a parent, which for me have been severely compromised. However I am still able to contribute in other ways. Being able to control all the computers in the house means I can help out with IT related stuff. I have setup Minecraft servers for them and helped install mods, I have installed and monitored parental control software and setup backup facilities and  I have fixed virus problems.

When I could still drive my wheelchair independently and didn’t require a full time carer, we were still able to go out to places as a family regularly. But as the logistics of getting out got more complex, the family activities decreased, although this is equally contributable to the troglodyte tendencies of teenage boys.

What has been the most unexpected thing you have learned during your journey with ALS/MND? 

I guess it would be how adaptable one can be in the face of adversity. In one of my videos I mention remembering when I learnt about Stephen Hawking and thinking how can anyone live like that. It seemed so horrific. But I am living like that, and whilst I disagree with some PALS who say there are positive aspects to our situation, you do adapt to it if you develop these three key attributes – perseverance, patience and most importantly, ACCEPTANCE. I won’t say these are responsible for my longevity (that’s just down to good fortune), but they have made the last seven years bearable.

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You’re Not You

Posted October 10th, 2014 by

There’s a greater sense of awareness around ALS lately. The IceBucketChallenge really shined a spotlight on a condition that many have heard of, but maybe not that many really understand. (If you missed it, see everyone here at PatientsLikeMe taking on the challenge, and what Steve, an ALS community member, thinks about it.

So it seems fitting that today there’s a new film coming out about what life with ALS is like. It’s called You’re Not You, and is based on the novel by Michelle Wildgen. Hilary Swank plays a successful classical pianist diagnosed with ALS. Emmy Rossum is also in the film as Bec, a directionless and brash young woman who becomes Kate’s full-time caregiver. This unlikely pair forms an intimate friendship and life-changing bond inspiring each other to live life to the fullest, while being brought together by the most challenging of circumstances. Through their unwavering support for one another, both women are moved to let go of who they were and discover who they are truly meant to be.

 

A special shout out and thank you to Hilary Swank, Emmy Rossum and Josh Duhamel for taking on the IceBucketChallenge, too!

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“Bang for the buck.” PatientsLikeMe member Steve shares about his experiences with ALS and the IceBucketChallenge

Posted September 19th, 2014 by

Ice + water + video camera = a viral ALS awareness campaign that has spread over social media and the news like wildfire. Millions of dollars has been raised for ALS research while more and more, people are learning about this neurological condition. Recently, PatientsLikeMe member Steve (who has been living with ALS since 2009) took on the challenge, and we caught up with him to find out why. Steve shared about his own diagnosis experience, what he thinks about the ALS community on PatientsLikeMe and what he hopes to see come out of the IceBucketChallenge. Don’t forget to follow Steve on his own blog, too. He calls it Bachblog. 

Can you tell us a little about yourself and your diagnosis with ALS?

I first noticed an odd cramping in my left hand sometime during the summer of 2009 when I was 49 years old. That fall, I realized I no longer had the strength to use fingernail clippers with my left hand. At the time, I was playing pickup basketball two or three days a week. I began to notice that after one hour of basketball I was “wiped out” and that I was having difficulty taking longer shots.

In January 2010 I saw a doctor for a sports hernia related to basketball. At my wife’s insistence, I brought up the cramping in my hand. He took one look at me (I was shirtless) and noted that I had fairly significant atrophy of the left arm. He referred me for an EMG, which I had a few days later.

Within a couple of months I got my neurologist to reluctantly admit that she believed I probably had ALS. She referred me to the University of Minnesota ALS clinic and, about a year later in February of 2011, I was given a definitive diagnosis.

Because I am a U.S. Navy veteran and the VA treats ALS as a “presumed service-related condition,” I am very well taken care of by the government. I am very fortunate in this respect and I wish all PALs had a similar level of support.

I retired in August 2011 as a computer programmer/analyst and UNIX systems administrator. My wife and I (with, at times, other members of my family including two daughters) have traveled quite a bit since my diagnosis: Hawaii, Belize, the Dominican Republic, Costa Rica and a Baltic cruise. I feel fortunate to have enjoyed years of relatively good health. However, I have declined to the point where any significant future travel would be very difficult.

Closer to home, I continue to enjoy family, reading, writing, online and (occasionally, with help) club and tournament Scrabble, trivia competitions, birding, and the Minnesota Timberwolves and Lynx. In the past two years I have created crossword puzzles that I have shared on my blog. I have been very happy to walk both of my daughters “down the aisle” in the past year and to welcome two great guys to our family.

You called the IceBucketChallenge a “seemingly ridiculous internet meme” in your video. Why did you decide to take on the challenge?

At first I thought that it was a curious way to spread ALS awareness and not much more. Many of the videos I had seen barely mentioned ALS and few included appeals for donations. But that soon changed, and I began to read of the astounding amount of money being raised.

My team had raised around $7000 in two previous ALSA walks, but I was not planning to participate this year for a variety of reasons. I decided that I would use the ALSIceBucketChallenge to make a contribution this year.

There are a bunch of ALS organizations people can donate to. Why did you choose to call out ALS TDI in your video?

I believe that the ALSA, while not perfect, does a lot of good work on behalf of our community. But I know that only about 27 percent of money donated to the organization is dedicated to research. There are justifiable reasons for this figure, but in the spirit of this challenge I wanted to raise money specifically for research. I have been very impressed by the work and commitment of ALS TDI. I believe they offer a lot of “bang for the buck” and that their commitment to openly sharing what they learn is absolutely essential to the overall effort of finding a cure for ALS.

You’ve been part of the PatientsLikeMe community for more than 3 years! How has connecting and sharing with others living with ALS helped you?

I cannot begin to enumerate all that I have learned from the site. The experiences of PALs who have lived with this disease for longer than I have – and, sadly, those who have died – provide such a wealth of experience and advice. Every patient has a different experience with this disease, but there is nothing I have gone through or will go through that someone else has not faced. PatientsLikeMe has been and will continue to be a valuable resource as I struggle to meet each new challenge.

It looks like you update your Functional Rating Scale on PatientsLikeMe a lot. Why do you donate your health data? What does donating your health data mean to you and to research?

I try to update my FRS every time I have an appointment and am evaluated on the scale by healthcare professionals. If I had to do this over, I might have chosen to do it consistently every month.

During my participation in the dexpramipexole drug trial, my FRS scores should have been particularly helpful for researchers and PALS interested in the drug. I continue to contribute my numbers as I do not know how and when an aggregate comparison of participants’ scores may be useful.

We’re all working to find a cure for ALS, but what research advancements do you hope to see in the short term?

I believe, as do such brilliant PALs and advocates as Steve Saling, Steve Gleason and Eric Valor, that until a cure or effective treatments for the disease are found, technology IS the cure. I hope to see continuing refinements of the high-tech solutions to many of the challenges presented by this disease.

Support for research into assistive technologies and for sophisticated but expensive ALS residences is important.

As more and more people learn about ALS through the IceBucketChallenge, what’s something you think they might not understand about the condition that you’d like to share?

I know that PALs who have lost the ability to communicate or who communicate with much difficulty are often assumed to be somehow compromised mentally. They are talked down to or assumed to be deaf as well as mute. In most cases, nothing could be further from the truth. I have not experienced much of this yet, but the assumption or even the appearance of the assumption that we are unable to think, feel, make decisions and speak (even if technologically assisted) for ourselves is profoundly discouraging.

Were you part of the PALS/CALS group that sent the letter urging the ALSA to donate their funds to ALS TDI? If so, can you explain a little about the letter and why the group felt it was so important to send to ASLA?

I did not contribute to the creation of this letter but I did sign it. I think it is important for the ALSA to honor the wishes of the vast majority of contributors to this campaign and spend this money on research.

Having said that, I do not believe that it is necessarily a good idea to spend it all immediately. This windfall will not happen again. It is important that any research efforts funded by this money are sustainable. A research effort that spends a large amount of funds upfront without a realistic prospect of continuing support is a dead end. I would like to see the ALSA commit to long-term support for a few of the best and brightest independent research efforts. To researchers who are open and committed to sharing their efforts. Big pharma need not apply. To give these independent researchers assurance that their support will not dry up next year or the year after that is critically important. Therefore, not all of this money need be spent this year. It does need to be committed to research and invested wisely. This will be a challenge, but it is very important. More than ever before, ALSA needs to be transparent and responsive to its constituents in this matter.


Seeing [MS]: The invisible symptoms – pain

Posted August 22nd, 2014 by

“I’m burnt alive every day.”

That’s how Stephen Papadopoulos, an Australian living with multiple sclerosis (MS), describes the level of pain he experiences on a daily basis. Pain is the second of nine symptoms portrayed in the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] awareness campaign, and Stephen details his experience in the video below:

 

You are now seeing pain

Photographed by Garth Oriander
Inspired by Stephen Papadopoulos’ invisible symptom

 

We’re highlighting pain this month in an effort to reveal the invisible side of living with MS. You can also read other posts on pain – of particular note, Tam’s story about her private, intense pain.

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“In my own words” – PatientsLikeMe member Steve writes about his journey with ALS

Posted July 16th, 2014 by

For those of you who don’t know Steve, you should! For years he worked as a successful landscape architect designing urban public spaces. In 2006, he was overlooking the design of the historic Boston Common when he was diagnosed with ALS. Steve retired from that career path and quickly started another – creating the Steve Saling ALS Residence, the world’s first fully automated, vent-ready, skilled service residence specifically designed for people with ALS (co-founder Ben Heywood and marketing team member Jenna Tobey went to visit him at the residence not too long ago).

Steve hasn’t stopped with just one residence – his ALS Residence Initiative (ALSRI) provides an environment where people with ALS and other debilitating conditions can live productive and independent lives. As Steven Hawking said, it demonstrates “the roles of technology empowering the lives of those who would otherwise depend entirely on the care of others. I look forward to living centers such as this becoming a standard for the world.” And Steve is on his way to making that a reality – the ALSRI has opened a new house in New Orleans and is currently building another one in Georgia.

Steve recently shared a story on Facebook about an accident that happened while he was on his way to meet up with friends and generously agreed to share it on the PatientsLikeMe blog, too. He put it all in perspective by talking about the challenges of being unable to communicate with medical staff, and how emergency personnel should be better trained to interact with people who have ALS to avoid potentially life-threatening mistakes. Check out what he had to share below.

A tale of friends, beer and ambulances…

I have always enjoyed drinking beer with friends, and ALS did nothing to change that. All spring and summer, my friends and I get together monthly for beer night. Unfortunately, one time I stood them up.

I had parked the van and was almost to Cambridge Brewing Company. I had to cross Portland Street and had to go down a wicked steep curb ramp, and it flipped my wheelchair on its side. It was really no big deal, but the ensuing ambulance ride could have killed me dead.

I appreciate that it must have been quite a sight as a bunch of people rushed over to help me and my mom. I just wanted them to put me back on my wheels so I could go drink beer, but it seemed like the ambulance got there in seconds. They were super nice, but they are paid to be cautious, and I was away from my computer and my grunting protests could not convince anyone not to take me to the hospital.

That is where things got dangerous. Everyone knew I have ALS, but they strapped me flat on my back on a hard board for the trip to the hospital. They were concerned about my spine, but I am already paralyzed and am more concerned about maintaining an open airway, but I had no way to communicate that. If my breathing had been more compromised, I would have suffocated on the way.

Fortunately, my breathing is without difficulty, even flat on my back. My burden with ALS is drooling. I can drool a gallon a day, and I expected to drown on my own spit on the ride to the hospital. One of the few words I can say is “up,” but everyone thought I was complaining about being uncomfortable and off I went. Miraculously, my body recognized the danger, and I realized I had severe dry mouth so I calmed down and made it to the hospital with my mom bringing my chair and more importantly my computer in the van behind the ambulance. I have to say that they were very nice at Massachusetts General Hospital, and my nurses and doctors were hot as balls. It would be tragic if they had killed me by trying to help me. They wanted to do a CAT scan, but I refused and was out within the hour. The whole experience reinforced my fear of going to the hospital when not able to speak. Hospital ERs and EMTs just don’t know enough about ALS to provide appropriate care. This needs to change.

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