2 posts tagged “artwork”

PatientsLikeMe usability study for mobile app

Posted June 3rd, 2015 by

Designing a new app is like designing a car. Your engineer and designer may have done a flawless job, but nothing matters until the person actually steps into the driver’s seat and test-drives the product. So when it came time for us to launch the first pass at our new mobile app, called PLM Connect, that’s exactly what we did. We invited a handful of members to come into the PatientsLikeMe office and test-drive the app.

Alex (ITalkToTheWind), a PatientsLikeMe community member, took some extra time to share about her experiences testing the app in an interview. One of the features, InstantMe, is a tool on the PatientsLikeMe website that’s a simple way to track and share how you’re doing. In this first pass of the app, and since she’s become a member in 2010, Alex has posted more than 1500 (!) InstantMe updates. Not only was she extremely helpful with her feedback, but she also brought in the artwork she’s created based on her InstantMe entries. Everyone on the PatientsLikeMe team was honored that Alex brought her art into the office for us to see, and we wanted to share it with the rest of the community, too. Here’s her story: 

Alex, what was it like doing the usability testing?
It was great to come down to the PatientsLikeMe headquarters to give my personal feedback on the first pass at PLM Connect.

I update my InstantMe every day, so I’ve been very eager for an application I can use while I am away from my computer so my charts can be as accurate as possible. Throughout testing the beta application, I got to dictate my thought process step by step with the engineering team. I communicated different ways to improve the application’s features, programming and design to make it more user-friendly and to have it operate more smoothly.

I also got to tell the team what my personal wants would be for a PatientsLikeMe application. Since I am an artist, it was great to be able to talk about how the design could compliment the different functions of the application. I mentioned how important it is to carry over the community and support aspect that is available at the main site over to the application. Overall, I was trying to think about the entire diversity of conditions in the community and how they could benefit using the application, and how to make it as easy to use as possible.

How do you use InstantMe on PatientsLikeMe?
I’ve been using InstantMe religiously to keep track of my moods for five years now, since I was diagnosed with my primary condition and began my treatment process. I basically see everything I’ve accumulated through my InstantMe as a diary of my life for the past 5 years.

It is very important to me to see how my treatments, symptoms, and life events all correlate with my moods to understand what is or isn’t currently working, and what has or hasn’t worked in the past, especially in a visual way. I’ve been able to keep track of absolutely everything I’ve tried to treat my conditions including medication, herbal supplements, vitamins, diets, different therapists and therapeutic approaches, exercise, lifestyle changes and meditation.

InstantMe also gives you the option to explain “Why” you are experiencing your mood, which has been crucial to me in reflecting on the moments that seemed so difficult at the time.

Another interesting part of that feature is reviewing how my automatic thoughts have changed through my treatment process, which is also really important for someone who suffers from mood swings like I do. I react differently now to difficult life events and can see how I’ve been better able cope with stress over the five years. It’s really nice to see how far I’ve come. 

Will you share a little about your InstantMe artwork?
My work is about the disconnect that occurs with one’s experiences and personal identity over time. I make paintings and drawings using my InstantMe mood logs, and other PatientsLikeMe charts by transferring them onto a physical material such as a wooden panel or paper.

I correlate the text from the InstantMe’s to remember why I was feeling good, bad or neutral and paint symbols to represent that time period, or draw the mood logs themselves into a painted environment or memory in which I was experiencing that mood.

It’s a lot about trying to gain a connection with these fleeting moments and my shifting identity over time and learning to accept them … the process of creating the artwork itself helps me cope with my condition.

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What lies ahead – PatientsLikeMe member John shares his journey with ALS

Posted May 14th, 2014 by

It’s already the second week of ALS Awareness Month, and as promised, we’ve got an interview to share with John (johnpp) – a PatientsLikeMe member that has been living with ALS since his diagnosis in the spring of 2013. John talks about a new sense of urgency that he feels along with his reaction and outlook after being diagnosed with ALS. And as we speak, he’s traveling across the United States with his adorable dog, Molly (that’s her in the picture) to help raise awareness and funds for ALS through his artwork. Learn more about his efforts on the ART 4 ALS website and check out his full interview below. 


When did you first start experiencing symptoms of ALS? What was your diagnosis experience like?

I first experienced ALS symptoms early in 2012 as I was trying to wind down a career in metropolitan planning. At the time, I was also heading up the recovery group I helped establish in our hometown of Schoharie NY after the devastating floods from Hurricane Irene in August 2013. The flood had put 85% of all homes and 100% of all businesses in town out of commission. I’m proud of the response from the community and from all over. Our group organized over 400,000 volunteer hours in the first year after the flood!

By the fall of 2012, folks were commenting that they were having a hard time hearing me at meetings. At the time, I thought my speech difficulty was related to recent dental work or simply stress. My wife of 33 years and soulmate, Bobby, had serious medical issues and we were doing home hemodiaylsis daily (even during the three months we had to live in our motorhome while our house was uninhabitable).

I stepped down from the recovery group in April 2013 and decided that I should go to a specialist about my speech symptoms. I chose the Movement Disorders Clinic at Albany Medical Center and had blood tests, MRI, etc. In August, the EMG test showed scattered motor neuron damage throughout my body and the ALS diagnosis was pretty solid.

My initial reaction was (1) relief that my condition would likely leave my mental capacities intact. Both of my parents died of Parkinson’s with dementia and full-blown-dementia is not something I wanted to deal with. (2) shock that it was ALS. Whoever thinks that? (3) gratitude for the life I have had. For the first time, I understood the sentiment expressed in Lou Gehrig’s “luckiest person” speech.

You’re traveling across the country with your awesome dog Molly – can you tell us a little about ART 4 ALS and what you hope to achieve?

In December of last year, my neurologist was up front with my prognosis. He said that I am at a high risk for respiratory failure because of my bulbar onset and that, if the failure kicks in, I had about two years to live. If not, he said I have maybe five. He added that if I plan to travel, to do it within the next six months or a year before it becomes more challenging.

That night, I spoke with my wife and she agreed to try to get stronger so we could travel. The next morning she was so weak that she went to the ER. Her body gave up and she died within 36 hours.

After a few months, I decided I would like to travel while I am able, and realized I would need a purpose to make sense of the journey. Since my ALS symptoms (speech, swallowing, weak arms and hands) would be evident to those I encounter, I chose to make the trip about ALS awareness. I prepared a 4 x 5 inch handout that talks about the trip, my art, ALS and the need for research. Friends suggested that Molly would be the face of the trip, so she is featured on the handout and our website. (She is also keeping her own blog, which seems to be more popular than mine!) Often, folks will ask about Molly and that opens the door to talk about the trip and about ALS.

Interest in the trip is strong in Schoharie, so I also set up a way for individuals to pledge to ALS research on a per mile basis. (See www.art4als.com)

Molly (isn’t she cute?!)

Why did you choose to donate all proceeds from your paintings the ALS Therapy Development Institute?

I chose to donate the proceeds from any artwork to ensure I would actually do artwork during the trip. There are many valid avenues for giving to support ALS research. I chose the ALS Therapy Development Institute because of its focus on near-term treatment options.

You mention on your website that you now realize there is an urgency to everything – how has this outlook affected your day-to-day life?

If there is a blessing to having ALS, it is the fact that I have a pretty clear idea of what lies ahead. There will be a time in the not-too-distant future when I won’t be able to do the things I can today. So I make myself explore, observe, contribute, participate as much as is healthy while I can. I have several projects and trips planned with my grandkids later this summer, knowing that next year they won’t be as easy. I have observed that the major characteristics of PALS (Patients with ALS) include hope; advocacy; interest in innovative therapy options; frustration with declining abilities; and regret for not having done more while he or she was still able. I am determined to minimize my regrets.

How has the PatientsLikeMe ALS community helped you learn more about managing and living with your condition? 

There are a number of online community forums available to PALS. When I stumbled onto PatientsLikeMe I was amazed at the sophistication of the website and the amount of information volunteered by so many people. I have searched on the website for other individuals with symptoms that are taking a similar course to mine and am following them, gleaning ideas about adaptive devices I may consider in the future. I have reviewed the self-reported efficacy of different treatments I have considered. This information is available nowhere else. While other forums seem to be content with basic ALS information and random user discussions, PatientsLikeMe offers the breadth and depth of information that I need to live my life fully.

What’s one thing you’d tell someone that has just recently been diagnosed with ALS? 

It’s not quite one thing, but I’d say take time to process the shock; realize that the diagnosis is not just about you, and let your family grieve; and use your days productively in a way that you will reflect on someday with pleasure.

Thanks for asking.

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