17 posts tagged “disease”

A patient’s perspective: member Gary reports back from the FDA public meeting on Parkinson’s disease

Posted October 27th, 2015 by

Back in September, Sally Okun, Vice President of Advocacy, Policy and Patient Safety, and community moderator Molly Cotter, attended the FDA public meeting on Parkinson’s disease (PD) along with PatientsLikeMe member Gary (tupelo).

We posted some interesting developments from the meeting in the forum, but we also caught up with Gary for his perspective on the event. Here’s what he had to say:

Why did you want to be part of the FDA public meeting?

On the day I was diagnosed, back in 2012, I spent a great deal of time reflecting on my life. I thought a lot about how Parkinson’s disease will impact me and my family in the future. On that day I made a commitment to myself that I was going to take control, to the best of my ability, on the course of the disease progression, and would do anything possible to find a cure. I was determined to educate myself as much as possible about the disease, put together the best possible health care team, learn all I could about treatments currently in research, and participate in clinical trials. Parkinson’s was a new challenge in my life and I intended to tackle it like I would any other challenge that I had faced in the past. Along the way in this new journey, I became more publicly involved as a PD advocate, both for advancing research as well as supporting newly diagnosed patients. So, when I noticed the FDA announcement regarding the meeting, I decided to send in my comments and thoughts in hope that they might be helpful, to whatever degree, in moving research along for better treatments.

What did it mean to be accepted?

When I submitted my comments I never expected to be asked to participate on one of the panels, nor was I intending to attend the meeting, which was on the eve of a religious holiday. I was quite surprised when I was contacted by the FDA, but was caught in a dilemma. Participation meant missing an important time with my family. However, when we discussed it, we all agreed that this was such a great opportunity, and honor, to be able to represent the needs of the millions of Parkinson’s disease patients worldwide to the FDA. There was no way I could turn down that kind of invitation.

What was it like being there as a patient representative at the FDA event? Did you feel like your voice was heard?

I’ve participated in a number of seminars and conferences in the past, so there wasn’t much difference with the arrangement for this meeting. If anything, it was much more low key. Nevertheless, I definitely had a sense of awe when I arrived at the FDA complex. There were multiple buildings all over the sprawling campus. It immediately reminded me of the importance of this event compared to others I’ve attended. We were going to be presenting to the Director of the FDA’s Division of Neurology Products and nine other senior staff members. This is about as high up as we could go in our advocacy to advance Parkinson’s disease research.

During the meeting, it was difficult for me to tell how our presentations were going and whether they would have an impact on the FDA’s staff, although it appeared to me that they were listening intently. I was certainly concerned about the limited amount of time I had to speak. Several days later, though, I watched the webinar presentation of our event and I felt that we hit on the large majority of the most important areas of concern that our community has regarding current and new treatments. Only time will tell if the FDA will act accordingly with our hopes and suggestions. One small item that I noticed which suggests that they were listing involves a question on the Patient Questionnaire at the meeting. We were asked to choose from a list of Parkinson’s symptoms the ones that were most impactful on our lives. In my presentation, along with several of the other panel members, we noted that they didn’t include pain or orthostatic hypotension, two very common symptoms, on their list. I did, however, see that on the new follow-up survey the FDA is conducting, they have added both symptoms to the bottom of the list. So, at a minimum, they were listening as we spoke about these debilitating symptoms.

What did you learn while you were there?

Well, I can’t say that I learned much about the disease while I was there, but, of course, that wasn’t the purpose of the meeting. Our presentations were intended to educate the senior staff and decision makers of the FDA. That being said, what I did learn was the amazing dedication and effort that members of our Parkinson’s community will undertake in order to be heard at a forum. Members with severe difficulties traveled from all parts of our country in order to be able to speak for a few minutes. I was truly honored, and most definitely humbled, to be part of a panel with these dedicated individuals. If you haven’t yet seen the archived presentation of the meeting online, I suggest that you at least watch the members of the first panel speak to the FDA about their symptoms, it was amazing.

What are your hopes for future research in Parkinson’s disease?

We were asked by the FDA to limit our answers to their questions in the context outside of finding an actual cure. In addition, we were mainly directing our responses to the FDA’s role of controlling the approval and distribution of prescription drugs, more so than studying the potential impact of alternative therapies such as exercise, vitamins or other supplements, or the development of new medical devices to assist with symptomatic control (all of which are needed). So I’ll stay within that premise.

I see the need for a three-direction approach for future research. First, we need to continue and expand research into the biological science of Parkinson’s disease, as well as other neurological diseases with similar developmental processes, such as Alzheimer’s and ALS. With a better understanding of the disease cause, pathways, and progression, we will have a much greater chance of finding better treatments and potential cures.

Second, I would like to see research into the development of better symptomatic treatments. These treatments should be effective for multiple symptoms, have fewer disabling side effects, and have extended release and longer term activity. Although today’s treatments are somewhat effective treating motor impairment, they are greatly lacking in effectiveness for many other non-motor symptoms. Many of the drugs have side effects that can be more disabling than the symptoms they treat. In addition, it would be desirable for new treatments have ease of administration, such as oral, sublingual or inhalable as opposed to invasive surgery or device implantation.

Third, and most importantly, we need research to discover interventional treatments that can slow or halt the disease progression, if not totally cure it. This research should target the development of new drugs and vaccines that can intercede along all of the numerous biological pathways as the disease progresses. For example, we would find means to either stop the misfolding of proteins, prevent proteins already misfolded from accumulating in brain cells, or eliminate misfolded proteins which have already accumulated and are leading to cell death. Finally, I would like to see more research in alternative treatments, such as stem cells and human growth factors, in addition to traditional drug development. It’s imperative that the FDA allow our scientists to be as innovative as possible as they attempt to find treatments and cures for the most complex illnesses we have in brain diseases. With new interventional disease modifying drugs, along with improved symptomatic treatments and a proper exercise regimen, most, if not all of us dealing with Parkinson’s disease would be able to live active and productive lives for many years beyond our diagnosis.

For more information, check out the full video of Gary’s panel. And don’t forget to visit the site to connect with Gary and the more than 11,000 other PatientsLikeMe members living with Parkinson’s disease.

Share this post on Twitter and help spread the word.


PatientsLikeMeInMotion™ 2015: Celebrating 7 years of PatientsLikeMe members giving back to their communities and raising awareness

Posted May 11th, 2015 by

For those of you who don’t know, our PatientsLikeMeInMotion™ program has been running since 2009—how time flies! Join us in celebrating our 7th year with a recap of 2014, our biggest year so far!

Last year, we had the honor of supporting 2192 members across 32 states that participated in a range of events and had a lot of fun along the way! Some of the events included a motorcycle ride, a golf tournament, a MuckFest, a Halloween Run and Relay, and a Cake Sale to boot!

If you’re unfamiliar with how it works, check out our guidelines – we sponsor 3-star members (super health data donors) who form teams and fundraise with their local nonprofits. And these advocates receive a donation, free team t-shirts and more! Here’s what some members had to say:

“Advocacy is huge, because without voices out there speaking on our behalf, we would never get any funding or support.”

“It is thanks to these fundraisers that there are now therapeutic options for patients like us. When I was first diagnosed, there was NOOOOOOOOOOOOOOOOOOOTHING. While there is still no cure, we have evidence that research is making strides and there is greater reason to hope. I have always been so grateful for the generosity of the PLM program. I feel so fortunate every time my family and I can contribute, to the financing of research for the cure.”

Quick facts:

More than 2,100 members from 113 different teams raised close to $24,000 through the PatientsLikeMeInMotion™ program in 2014.

Events took place in 32 states:

And represented 28 disease communities:

Thanks to everyone who participated in 2014! If you’d like to join the program in 2015, here’s all you need to do:

  1. Join PatientsLikeMe (it’s free!)
  2. Get 3 stars (your profile is up-to-date)
  3. Submit your team details (within 3-4 weeks notice of the event, please!)

Share this post on Twitter and help spread the word.


You can make a difference in April

Posted April 3rd, 2015 by

Eight years ago this April, the PatientsLikeMe Parkinson’s disease (PD) community launched, and now, more than 12,500 people are sharing about what it’s like to live with PD. What better way to recognize this awesome community than to participate in Parkinson’s Disease Awareness Month?

Listen to Leslie Chambers, the president and CEO of the American Parkinson’s Disease Association (APDA), explain the facts about PD in the video below:

As she says, 60,000 people worldwide will be diagnosed with PD in 2015 – that averages out to 164 people every day, or one person every nine minutes.

This April, it’s not just about the 12,5,000+ PatientsLikeMe members living with PD, or the 60,000 people who will be diagnosed in 2015 – it’s about everyone who is living and has ever lived with PD, and all their family, friends and colleagues who have been affected.

You can make a difference. The APDA is running a “30 days, 30 ways” campaign all month long, so be sure to check their website daily to learn how to get involved. The Parkinson’s Disease Foundation is also participating in raising awareness, and they’ve created a great toolkit to get you started. And don’t forget to share through the #PDawareness or #Parkinsons hashtags.

If you’ve been diagnosed with PD, join 12,500 others in sharing to live better, together.

Share this post on Twitter and help spread the word for Parkinson’s disease.


Patients as Partners: Hallucinations and Parkinson’s disease questionnaire results

Posted February 26th, 2015 by

It’s time for another Patients as Partners post, and today, we’re happy to share the results of the Hallucinations and Parkinson’s disease questionnaire.

In March 2014, more than 500 PatientsLikeMe members living with Parkinson’s disease (PD) took part in an Open Research Exchange (ORE) questionnaire about their condition. They worked with Dennis Chan and Ruth Wood from the University of Cambridge to understand a symptom called an extracampine hallucination, which is the sense of a presence beside or behind you even when there’s nothing or nobody there. So, unlike visual hallucinations, the presence can only be sensed or felt, not seen.

Everything the community shared will help researchers develop a new tool to better measure this type of hallucination and alert doctors and care teams to ask about this symptom earlier rather than later. Read the results here.

What’s ORE all about again? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

Share this post on Twitter and help spread the word for Parkinson’s disease.


Getting to know our Team of Advisors – Emilie

Posted February 2nd, 2015 by

If you’ve been following the blog, you’ve already met three members of the PatientsLikeMe Team of Advisors – Dana who is living with bipolar II, Lisa who is living with Parkinson’s and Becky who is living with epilepsy. Now, we’d like to introduce Emilie, a social worker and therapist who is living with Sjogren’s Syndrome and fibromyalgia.

About Emilie (aka Memmie)
Emilie is a Licensed Clinical Social Worker (LCSW) who works with children living with chronic illnesses and their families. She’s also been a therapist for both children and adults with chronic illness and in her work has developed a pediatric diabetes pain management program. Emilie herself has an autoimmune disease, fibromyalgia — and recently had to resign from this work that she loves due to the pain, fatigue, and subsequent emotional strain. She hopes to return to doing similar work once her medical issues are more manageable.

Emilie on patient centeredness
Emilie believes the question should be asked, “what are the ways your health care provider(s) could be more helpful to you?” to better our understanding of patient centeredness. She believes that doctors need to listen to and respect that their patients know their bodies best.

Emilie on being part of the Team of Advisors
It was really special to be chosen, I didn’t ever in a million years think I would be chosen. When I got to the interview part I thought there’s no way they’ll pick me. When I found out I was chosen I was really excited because I felt like I had been to enough doctors in my life that I had something to share. I hoped that we could help researchers study the things that would be relevant to us — the collective us — instead of just the things they wanted to know and they wanted to study.

Being part of the Team of Advisors makes me feel like I’m more in control, like an expert about my own body. When you go to the doctor, they think they know exactly what’s happening — they’re going to treat it they way they treat everyone else with fibromyalgia or Sjogren’s or arthritis. It’s great to be able to have input to help doctors understand that we need to be treated as individuals and not like a disease name. Just because I have migraines, does not mean my migraines are the same as someone who just walked out of the exam room with migraines.

Others members on the site have contacted me because I’m on the Team of Advisors, and they’ve seen my picture or seen my name and have said “I’ve seen what you’re all doing, and I went to your page and I see you have some of the same things I do and I found you and I thought you could be a good resource for me.” So sometimes I’ve been able to help out and that has been nice.

Emilie on tracking on PLM
One of the things tracking my health on PatientsLikeMe has helped me recognize is that sometimes I think I’ve been feeling lousy forever — I think that’s easy for people with chronic pain to do — but when I look back at my InstantMe chart, I realize there are more days than I thought where I felt good. It gives me hope that things aren’t bad all of the time and that things can get better. When I go to my doctor and they ask me how things have been, I can tell them that things have been up and down, and sometimes there have been more good days than bad days.

Share this post on Twitter and help spread the word for autoimmune diseases and fibromyalgia.


Open funding for open science to accelerate ALS research: An interview with Prize4Life CEO Shay Rishoni

Posted January 6th, 2015 by

Just about a year ago, we teamed up with Sage Bionetworks and TED Fellow Dr. Max Little for an ongoing Parkinson’s disease (PD) project called the Patient Voice Analysis (PVA).

 

The big idea: combine data from two sources – phone-based voice recordings and patient reported data from PatientsLikeMe’s Parkinson’s Disease Rating Scale (PDRS). Then, make the de-identified data sets available to the broader research community on Sage Bionetworks’ cloud-based computational research platform (http://www.synapse.org) to develop new tools to track PD disease progression.

We were overwhelmed by the response from the PatientsLikeMe PD community. More than 650 members provided 851 voice samples, and 779 of those were matched to the PDRS symptom data entered.

 

What’s next for open science?

Sage Bionetworks is working with the distributed DREAM community and ALS non-profit Prize4Life on another open science challenge alongside called the ALS Stratification DREAM Challenge. How does it all fit together?

The “Fund the Prize” campaign is the first of its kind effort to make the path for accelerating drug development completely open – the patient data is open access, the research is open, global and collaborative, and the funding is crowd-based.

The ALS Stratification Challenge, opening in Spring 2015, will be a worldwide cloud-based competition designed to spur the development of quantitative solutions that can identify which ALS patients’ disease will progress rapidly and which will progress more slowly. Prize4Life provides the largest ALS clinical trials database in the world. Sage Bionetworks and DREAM have created a synergistic competition concept and cloud-based computing platform that includes forums, webinars and a “leaderboard” that shows whose model is working best.

The individual or team with the best solution wins the prize – a $37,000 donation that the Challenge is asking everyone to help raise through the INDIEGOGO “Fund The Prize” campaign. The prize will help incentivize innovators from around the world to take part, and 100% of every donation goes towards the prize.

Helping spread the word

Prize4Life CEO Shay Rishoni is a 48 year-old dad of two boys and was an Ironman triathlete before being diagnosed with ALS in August 2011. Within three months he saw his ability to use his arms weaken considerably while no other body parts were affected. Less than two years later he was completely paralyzed and breathing with a ventilator. We caught up with him to help spread the word and learn more about the Challenge, why he thinks the prize is so important and why he works so hard.

Can you tell us a little about your own journey with ALS?

I was diagnosed with ALS 3.5 years ago, when I was 45 years old, a CEO of a company, an Ironman, a pilot, a military colonel (in res.) and a family man with two young sons. Given all of that, receiving a diagnosis of ALS was of course not what I had planned! But I knew that like everything else in life, I will make sure to stay true to myself and my values nonetheless- to stay positive, active and entrepreneurial. That meant in my public life to fight for the development of treatments- and a cure!- for ALS, for current patients like me, but mostly for future patients. In my private life, as a husband, as a friend and as a father to fight to feel and know that Life is Good, and winning is a way of life. Although by now I am fully paralyzed, I believe that as long as I dream up plans and then work to make them happen, I am invincible.

You can see more of me explaining it in this video of my TED talk.

How did you become involved with Prize4Life and the ALS Stratification Dream Challenge?

I first learned about Prize4Life from its founder, Avi Kremer, who is also an ALS patient. Avi was diagnosed with ALS 10 years ago, as a 29 years old Harvard Business school student striving to make finding a cure for ALS a viable business. He was the recipient of the 2011 Israeli Prime minister award for innovation and entrepreneurship in the non-profit sector. I was inspired by his strength, courage and sophistication, and with Prize4Life model and important work and I knew that this is a framework with which I will do important meaningful things for ALS research, and I become the CEO in 2013.

One such important thing is the ALS Stratification Dream challenge. I think it’s a unique and highly innovative initiative. From a patient perspective it addresses a critical question- How can patients with a rare disease create meaningful solutions for their own illness? And the answer is by engaging as many stakeholders as possible. The “Fund the Prize” campaign is the first of its kind effort to make the path for accelerating drug development completely open- the patient data is open access, the research is open, global and collaborative, and the funding is crowd-based. It builds on Prize4Life’s database of ALS patients- the largest ALS clinical trials database in the world. Sage Bionetworks and DREAM, our collaborators, have created a synergistic competition concept and cloud-based computing platform to allow a planetary republic to use the data. Together we will get computational solutions that will tell us why patients are so diverse- from Lou Gehrig’s succumbing to the disease within two years to Stephen Hawking’s 50 years odyssey with ALS. The Challenge, opening in Spring, 2015, will be a worldwide cloud-based competition designed to spur the development of computer algorithms that effectively predict which ALS patients will experience rapid disease progression and which patients will live longer.

Why do you think the prize model is so important?

Prize4Life’s prize model is inspired by similar programs such as X-prize for space travel, demonstrated to foster meaningful research. These programs allow bringing awareness and new minds into a field and generate measurable results for well-defined goals. Prize4Life wants to bring all these benefits to ALS- awareness, new minds and measurable, highly needed, results.

Prize4Life aspires to span broad fields of innovation for their importance for ALS: we gave a $1M prize for a medical device that serves as a biomarker for ALS, another prize for developing algorithms that can predict disease progression and we are running a prize for a druggable cure. We believe that biologists, chemists, engineers, clinicians, software developers and all citizen scientists can bring a meaningful change in ALS.

Prize4Life and DREAM have already demonstrated the power of open Challenges to advance ALS disease research. The first ALS Challenge, conducted in 2012 when Prize4Life’s open ALS patient database contained data from about 1,000 patients, leveraged insights from over 1,000 solvers from 63 countries to identify novel methods that have the potential to reduce the costs of ALS drug development by millions of dollars. The winning approaches are now being used in the development of several ALS treatments, and are described in a recent article in Nature Biotechnology (here is coverage by Science news).

Why do you work so hard?

Because I have a lot to accomplish. (“If not me than who? If not now than when?”) ALS is still an orphan disease, still is relatively unknown, and we still see tremendous potential to realize- computer scientists can create solutions for better treatments and care, engineers can create better assistive technology, biologists can create better drugs… I believe everyone can be part of the victory over ALS.

What’s one thing about ALS that you think everyone should know?

That we, the ALS patients, even when we can no longer speak, still have a voice. That we still have big dreams and still work to make them happen, and if enough people will work together, we will win the fight over ALS.

…and that ALS patients can love and be loved.

How do you see open science evolving in the future?

I think open science will only become more important in fostering innovative research ideas from diverse communities. It will allow everyone to be part of the solutions, and that means many more solutions!

Where can someone make a donation to help fund the prize?

“Fund the Prize- Solving ALS Together” is a crowdfunding campaign (running now on Indiegogo.com) and intended to provide the prize money for the Challenge and thereby to bring together renowned scientists worldwide and drive innovation. The crowdfunding will run until January 22, 2015.

Share this post on Twitter and help spread the word for Fund the Prize and ALS.


Throwing it back this Thursday for Crohn’s and Colitis awareness week

Posted December 4th, 2014 by

We’re throwing it back this Thursday, but to help raise awareness for something that’s happening right now: National Crohn’s and Colitis Awareness Week (Dec. 1st to 7th). For this #TBT, our very own Maria Lowe shares about her experiences with Crohn’s disease. Maria is part of the PatientsLikeMe Health Data Integrity and Research Teams, and she’s been living with Crohn’s since she was just a kid in the 90s. Her father, David, was also diagnosed with Crohn’s back in 1980, but as you’ll read, it wasn’t an easy process for either of them.

This week, it’s all about raising awareness for everyone living with IBD. You can learn how to help on the Crohn’s and Colitis Foundation of America’s (CCFA) website, and be sure to share your support on social media via the #CCFAawarenessweek hashtag. And if you’ve been recently diagnosed with either Crohn’s or UC, reach out to others like you on PatientsLikeMe.

Share this post on Twitter and help spread the word for Crohn’s disease and ulcerative colitis.


“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.

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


Getting to know our 2014 Team of Advisors – Lisa

Posted October 27th, 2014 by

A few weeks ago, we kicked off the “Getting to know our 2014 Team of Advisors” blog series with Dana, a PatientsLikeMe member from New Jersey that is living with bipolar II. And now, we’d like to introduce you to another member of the team – Lisa. 

About Lisa (aka lcs)

Lisa’s recent work experience was to help healthcare providers improve care delivery working for Cerner Homecare, a home health/hospice software solution, and Press Ganey, a patient satisfaction measurement/improvement organization. She is very knowledgeable about providers/systems and the flaws in the system. She was diagnosed with Parkinson’s disease (PD) in 2008, and just recently stopped working as a full time executive due to non-motor PD symptoms like loss of function, mental fatigue and daytime somnolence, and she is now a volunteer at National Patient Advocate Foundation, and a Mom whose daughter just got married in June.

 

Lisa on being part of the Team of Advisors

“When we had our first in-person meeting in Cambridge, we were a group of strangers who had no idea what to expect. We quickly learned we were connected by our common experiences and our passion to improve the patient’s experience. I think we were all surprised that our variety of health conditions gave us much more in common than we anticipated. Our passion and respective experiences made the discussion rich. And the PatientsLikeMe Team made us feel special and like we were part of the team. I think dinner the night of our arrival, before we’d had any formal introductions to each other, lasted over 3 hours and ended only because of fatigue!

Before I was introduced to the history and mission of PatientsLikeMe at a deeper level, I was an advocate and I knew I was benefitting from the community and tools. Learning more about the history of the brothers, the openness of the culture and the passion shared by the formal team has made me an evangelist.”

Lisa’s view on patient centeredness

“Patient centeredness is a new buzz-word in healthcare today. It’s somewhat oversimplified, but at its most basic it is putting the patient at the center of care. This means many things in healthcare: ensuring access to care, engagement of the patient at and between visits in their own care, integrated care across specialties. In research: collaboration among researchers to advance discoveries as the priority, with financial return secondary; finding a better balance between patient safety and speed to market of new discoveries, improving patient participation in clinical trials.”

Lisa’s contribution to researchers at the University of Maryland 

PatientsLikeMe recently invited the University of Maryland (UMD) to our Cambridge office for a three day consortium that kicked off a partnership funded by their PATIENTS program, which aims to collect patient input and feedback on all phases of research, from ideas to published results. For one of the working sessions we invited Lisa to join us remotely, to discuss her journey with Parkinson’s disease (PD), and share her perspective and expertise as a patient. Here’s what she experienced:

“When I was still working, I learned that Parkinson’s affected my ‘public speaking’ ability. So, starting our discussion with a Q&A format helped me feel that it wasn’t presenting but rather just talking with colleagues. Also, speaking ‘as a patient’ meant I didn’t have to pretend…like if the right word didn’t come to me quickly, it was okay. The PatientsLikeMe team made it easy.

I had to work out my thoughts in advance and at first had considered sharing ‘data’ about PD. As I thought further though I realized that they live with data, they don’t live with PD. Instead I tried to share my experience through storytelling, hoping I could bring them into the life of a PWP on a daily basis.

Two things came as a surprise, both out of the questions I was asked by the UMD team. When we opened up the discussion to questions, there was some good discussion about the hurdles of participating in a clinical trial from the patient’s perspective. But then the researchers asked me questions I didn’t expect – not inappropriate, just surprising to me. One [of] the researchers wanted to know how my condition affected my family.

Another asked me, “what would my experience be like if I didn’t have PatientsLikeMe as a resource?” That one made me think. I hadn’t realized that I’d probably have no idea what I didn’t have. I would not know that other patients often have this onset of anxiety in public that they’d never had before. I would not know that there is a skin condition associated with PD. I would have a list of meds I kept and probably wouldn’t be able to go back and see start and stop dates because I wouldn’t have bothered saving that data…..

Patient participation in research is more than recruitment and trial results. I think a patient should participate in the study design process – before the Institutional Review Board approves. Be more creative in the design:

  • Ensure patients who meet the study criteria KNOW about the study – extend your reach to leverage support groups, forums and patients.
  • Ensure patients have ACCESS to the study – if your study requires multiple visits and has a handful of study sites, you’re limiting yourself to a finite number of potential participants.
  • Ensure patients learn about the study RESULTS – we need to know what we did mattered so we’re inspired to do it again, so we’re inspired to tell others.

For the PD community, a recent study found that only 1 in 10 patients with Parkinson’s disease have participated in a trial. PARTICIPATE! My experience is that YOU have to go find them. Sure, if you see a doctor in an academic setting, you’ll see flyers posted on the bulletin boards about trials (your provider may or may not mention to you). PatientsLikeMe has a clinical trials tab (did you know that?). PD has Fox Trial Finders and I suspect there are other condition specific registries. Or go to http://clinicaltrials.gov/ and search a database of private and public clinical trials. Together we can all help each other and ourselves!”

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.

Share this post on Twitter and help spread the word.


Research, support and hope for spinal muscular atrophy

Posted August 11th, 2014 by

If you know PatientsLikeMe, you know that neurological conditions take us all the way back to our beginning. Stephen Heywood, the brother of our founders Ben and Jamie, was diagnosed with ALS back in 1998 at age 29. Today, almost ten years after PatientsLikeMe was created, thousands of members living with ALS and other neurological disorders are sharing their stories and donating health data to help improve the lives of others and contribute to medical research. And in the spirit of Stephen and everyone living with these conditions, we’re recognizing Spinal Muscular Atrophy Awareness Month this August.

Spinal muscular atrophy (SMA) affects the nerves responsible for movement, including breathing and other bodily functions. It is inherited through genes passed on by parents who are carriers of the genetic code.

SMA affects people of all ages, genders and backgrounds. There are four types of SMA – Types 1, 2 and 3 all affect children and adolescents, while type 4 is usually limited to those above the age of 35. And although SMA is classified as a rare condition, think about this: SMA affects approximately 1 in every 6,000 babies, and about 1 in 50 people are carriers for the condition.1

So what can you do this August to raise awareness for SMA? Orange and purple are the two colors designated for SMA awareness, so wear or display them and let people know why you are! The Families of SMA (FSMA) also organizes many awareness events around the world, everything from walks to dinners to Bowl-A-Thons. Check out their website and find an event near you.

Share this post on twitter and help spread the word for Spinal Muscular Atrophy Awareness Month.


1 http://www.fsma.org/FSMACommunity/understandingsma/quickfacts/


Turning blue for Myalgic Encephalomyelitis Awareness

Posted May 12th, 2014 by

Did you know that today is International Awareness Day for Chronic Immunological and Neurological Diseases (CINDs)? CINDs include fibromyalgia, Gulf War Syndrome, Multiple Chemical Sensitivities, Lyme disease and Myalgic Encephalomyelitis (also know as Chronic Fatigue Syndrome or ME/CFS).

ME/CFS is tough to diagnose because there are no tests for it, and other conditions can cause very similar symptoms. Plus, no one knows exactly what causes ME/CFS, and although it is most common in women in their 40s and 50s, it can occur in both genders at any age.1

So why blue? May12.org is encouraging all advocates to turn a part of their body blue for ME/CFS awareness – you can dye your hair (or wear a wig), paint your nails and even Photoshop yourself. Or, just wear a blue t-shirt 🙂 Check out their Facebook page and their website for more information on ME/CFS awareness, and don’t forget to submit your blue photos!

If you’re looking for more resources on ME/CFS, PatientsLikeMe member Jen has been working on a film called “Canary in a Coal Mine,” that we shared about on the blog back in October. The film is currently in production after a successful Kickstarter campaign, but you can still check out the official website and the video below to learn how you can help change the face of ME/CFS.

 

On PatientsLikeMe, more than 10,000 people are living with ME/CFS, and they’re sharing their health data by tracking symptoms and evaluating treatments. If you’ve been experiencing ME/CFS, connect with others like you in the fibromyalgia and ME/CFS forum and speak with the people who know what you’re going through firsthand.

 Share this post on twitter and help spread the word for ME/CFS Awareness Day.


1 http://www.nlm.nih.gov/medlineplus/chronicfatiguesyndrome.html


Let’s talk about Huntington’s Disease

Posted May 6th, 2014 by

May is packed with mental health awareness, and we’re continuing to recognize neurological conditions through Huntington’s Disease (HD) Awareness Month. HD is a mental health condition that affects brain cells (neurons) and causes them to degenerate over time.

According to the National Institute of Health (NIH), HD can only be passed down from parent to child through a genetic mutation. If a child has a parent with the HD gene, he or she has a 50% chance of inheriting it – and all people who have the gene will eventually develop HD.1 The Huntington’s Disease Society of America (HDSA) states that about 1 in 10,000 Americans are affected by HD, and symptoms typically begin between the ages of 30 and 50.1 2

There is no current cure for HD, but some treatments help to limit certain symptoms like involuntary muscle movement. If you’re looking to learn more about HD or get involved during HD Awareness Month, the Huntington’s Disease Society of America (HDSA) has a great advocacy video up on YouTube (check it out below), and the organization is always looking for e-advocates to join their “Let’s Talk about HD” campaign. And you can always find support and info from others that have walked a mile in your shoes in the HD community on PatientsLikeMe.

 Share this post on twitter and help spread the word for Huntington’s Disease Awareness Month.


1 http://www.hdsa.org/about/our-mission/what-is-hd.html

2 http://www.ninds.nih.gov/disorders/huntington/huntington.htm


The Patient Voice- Parkinson’s member Ed shares his story

Posted April 21st, 2014 by

 

Back in March, we shared some of our infographics and videos on the blog, and as part of our #dataforgood initiative, PatientsLikeMe member Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort. Click above to watch his video, and keep an eye out for more interviews with PatientsLikeMe members talking about what #dataforgood means to them.


“I would just like to understand the ‘why’” – a conversation with PD community member dropsies

Posted April 14th, 2014 by

Right at the start of April, you might have seen us post on the blog that it’s Parkinson’s (PD) Awareness Month. And to keep Parkinson’s awareness going strong all month long, we’re sharing a recent interview with PatientsLikeMe member Betty – aka dropsies to those in the community. She was diagnosed with Parkinson’s back in 2009, but was experiencing symptoms since way back in 2005. And just at the start of 2014, she was also diagnosed with type 2 diabetes. Check out her interview below where she shares about her frustrating Parkinson’s diagnosis experience, how diabetes might impact her future eating habits and what she means by a family of ‘co-takers.’

Tell us about your initial diagnosis experience with Parkinson’s – on your PatientsLikeMe profile, you mention your symptoms aren’t “textbook” – what are they like?

My diagnostic tale has been long, complicated, and oftentimes frustrating, like many PWP experiences, and has yet to come to a medically-agreed upon final conclusion. I don’t care what it’s called. I would just like to understand “why” before I’m actually confined to life in a wheelchair.

After two years of thorough investigation, working with my PCP and including cardiac and rheumatology examinations, my neurologist eliminated many possibilities, with testing for lyme disease and lupus being repeated. The only confirmed diagnoses to be made were narcolepsy without cataplexy, a condition my history showed I’d had since childhood, but  escalated with menopause and restless leg syndrome (RLS).

Three years later, after aggressive treatment to control the narcolepsy and RLS, the unexplained issues continued to worsen. The increasing difficulties were with balance, loss of dexterity, freezing at step-ups, dystonia, shuffling gait, physical restlessness, exertion tremors with pronounced shortness of breath, full body muscle pain and stiffness, arms clinging to the body, and index or middle finger fidgeting the thumb, most presenting intermittently with no definitive pattern. I was referred to an MDS in May of 2009 who reviewed the battery of tests, labs, and imagery from the previous 5 years, conducted a clinical examination, waited 4 months and repeated the examination to conclude “an undefined movement disorder, prominent on the left, not rapidly progressing (therefore not of immediate concern) but probably early Parkinson’s Disease”. I was put back under the care of my primary neurologist with additional dosages of Mirapex, already being taken for RLS, and life continued on.

Within the year occasional episodes of Choreoathetosis greatly disturbed co-workers and friends, and as my lack of alertness became alarmingly severe despite an increase in Provigil, the Mirapex was reduced back to bedtime only. It was clear that treating my Parkinson’s symptoms was not going to be easy with narcolepsy. Under a new supervisor, my job duties were reviewed and adjustments made, but it was still a position that required a great deal of personal interaction, and eventually it was determined that I could no longer meet expectations. I was losing the ability to comprehend, think, and speak “in real time.” I moved back “home” and began the task of making a new and very different life.

My current PCP, who cautiously agrees it’s Parkinson’s, is very supportive and wants very much to improve my quality of life. I have been referred to two neurologists within the last 5 months, neither an MDS, but both, within the first 5 minutes of a single office visit and without my medical records, have dismissed the 2009 diagnosis with no further investigation planned, or even offered. One, who felt cog-wheel rigidity in my left wrist, said “it’s complicated,” but why no genetic testing, no PET or SPECT, and why wasn’t a trial of Sinemet given? The other said I don’t have resting tremor, he found no cog-wheel rigidity, and I show facial expression, so it can’t be Parkinson’s, so there’s no reason to try Sinemet.

It takes approximately 18 hours of continuous observation in a simulated home environment using standardized methodology to gather the data necessary to diagnose narcolepsy, so how can movement disorders, with such a wide array of possibilities and variations, be properly diagnosed in randomly performed clinical examinations generally lasting less than 45 minutes in total?

Your oldest son is now your caretaker, and you mentioned the difficulty of the role reversal, can you tell us about that?

It’s become more of a shared role between both my sons, although the youngest doesn’t live nearby.

It has taken time for all of us to adjust to the changes, and although it will be a continuing adjustment, what I thought I had lost as a mother is not lost after all. I came to realize that I still needed to hold on to being Momma. I had to see that I still have the opportunity to teach my children by example. And they had to realize they still needed me to lean on from time to time and to offer thoughts for their consideration when making decisions. Sure, some things have changed a little, but then the small stuff has always been a moving target.

Twenty-five years ago I’d stay in the car while my oldest went into the neighborhood store alone to make a purchase. Now I sit in the car while he goes into a store to make a purchase for me. So I sit in the car . . . nothing new, just different reasons. Fifteen years ago I’d tell my youngest it was a FYOS night because I had too much work to finish. Now I may tell him to help himself with whatever he can find, but I’m not feeling up to eating anything for a while. So he fixes his own supper . . . nothing new, just different reasons.

What I had to realize is that we are still what we’ve always been. We are family, co-caretakers of each other. We are learning to work together again, just as we did when they were still living at home. Only the reasons have changed.

You’re super active when it comes to filling out your health profile on PatientsLikeMe — how do the tools help you track your health, and what have you learned?

One thing that I have definitely learned is that once a symptom becomes a daily standard, I don’t necessarily notice or remember it unless it was severe or continuous that day. I may have a single incidence of freezing early in the day and if I don’t fall from it, or have a great deal of difficulty breaking loose from it, I completely forget about it by the time I do my symptom update.

I’m certainly learning there’s no predictability! I keep thinking that I’ll see some kind of pattern, but nothing has appeared as yet. I can have symptoms causing me great difficulty for weeks at a time and suddenly disappear for months before being noticed in the slightest again. And others are always with me, but other than the obvious, such as loss of coordination and falls, and stress effects, there’s no pattern or connection, even in the level of severity.

You’ve recently been diagnosed with type 2 diabetes. How has another diagnosis impacted your Parkinson’s and day-to-day life? 

So far it’s been a blessing. I put on a great deal of weight since I began this journey, and with little pleasures left to be enjoyed and apathy holding my focus to the simple pleasure of food, I needed a wake-up call! If I’m ever prescribed Sinemet or any Levodopa, I know I’ll have to reevaluate my eating plan to compensate for the protein conflict, but for now I’m trying to stay focused on controlling my diabetes and losing as much weight as I safely can.

It’s probably a first, but I was disappointed that I did not experience the most common side effect of my diabetic medication, Metformin. Both the doctor and the pharmacist gave stern warning that it causes severe diarrhea in the first few weeks. With the constant battle of constipation PWP endure, I was looking forward to it, but it never happened! No change in that situation at all.

Finally, April is Parkinson’s Awareness Month. You mentioned fitting into a world that ‘doesn’t know’ what it’s like. What would you like to teach people about Parkinson’s?

The most important thing from my perspective would be that Parkinson’s is not fully visible! Besides the mental and emotional changes caused by the altered state of brain neurotransmitters, there are other non-motor symptoms caused by Parkinson’s. Even tremors are not always “visible.”

One of my earliest and continuing issues is Akathisia, better known as internal tremor and restlessness. There are times that if what I feel could be seen, it would look as if I was holding a live electrical wire. I’ve day-dreamed of a torture rack and how wonderful it would feel to be stretched until it stopped. Thankfully, this level of severity is rare for me. It’s more subtle most of the time. It’s a feeling that doesn’t allow me to sit or stand still. Regardless of the fatigue and pain that builds, sitting to rest is worse. The only thing that brings any relief is to keep moving. If I stop in one place I rock. If I must sit I fidget until I can’t take it anymore and I get up and start pacing, stretching, moving! If it’s confined to just the arms, wrapping in a massaging chair pad can ease it in time, but usually it’s full body and the only solution is to keep moving until it settles, often taking hours!

Akathisia is a little-studied, sporadic symptom in about 26% of PWP, and is only one symptom of Parkinson’s that is visible, although it leads to very visible attempts to get relief. Some of the other non-motor function symptoms PWP often face are constipation, bladder incontinence, difficulty swallowing, gum and dental deterioration, excessive sweating, intolerance to heat and cold, daytime sleepiness, pain, vision issues, loss of taste and smell, memory loss, difficulty with word recall, and apathy. Parkinson’s Disease does not stop with making slow, stooped, stiff, shaky people…it’s so much more!

Betty Bland

a.k.a. “dropsies”