8 posts tagged “amyotrophic lateral sclerosis”

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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Speaking up for hope during ALS Awareness Month

Posted April 28th, 2014 by

May is just a few days away, and we wanted to get a jump-start on spreading the word for Amyotrophic Lateral Sclerosis (ALS) Awareness Month. As many out there might know, PatientsLikeMe was founded on the life experiences of brothers Stephen, Ben and Jamie Heywood. In 1998, Stephen was diagnosed with ALS and his brothers went to work trying to find new ways to slow his progression. But their trial and error approach just wasn’t working, and so they set out to find a better way. And that’s how in 2004, PatientsLikeMe was created. If you don’t know the story, you can watch the feature documentary of the family’s journey, called “So Much So Fast.”

ALS is considered a rare condition, but it’s actually more common than you might think – in the United States, 5,600 people are diagnosed with ALS each year, and as many as 30,000 are living with the condition at any given time.1 ALS affects people of every race, gender and background, and there is no current cure.

Even before PatientsLikeMe, Jamie started the ALS Therapy Development Institute (ALS TDI), an independent research center that focuses on developing effective therapeutics that slow and stop ALS. Now, it’s the largest non-profit biotech solely focused on finding an effective therapy for ALS. And on May 3rd, “The Cure is Coming!” road race and awareness walk will be held in Lexington Center, MA, to help raise funds for ALS TDI. There’ll be a picnic lunch, cash prizes for the road race winners and live music. Last year, over $110,000 was raised for ALS TDI – if you’re in the neighborhood, join the race today.

Also, the ALS Association (ALSA) sponsors several events during May, and this year, you can:

Back in January, we shared a special ALS infographic on the blog – the PatientsLikeMe ALS community was the platform’s first community, and now, it’s more than 6,000 members strong. If you’ve been diagnosed with ALS, there’s a warm and welcoming community on PatientsLikeMe waiting for you to join in. Ask questions, get support and compare symptoms with others who get what you’re going through.

Keep an eye out for more ALS awareness posts on the blog in May, including an interview with one of our ALS members.

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1http://www.alsa.org/about-als/facts-you-should-know.html