12 posts from December, 2012

Out of the Office: PatientsLikeMe Visits ALS Pioneer Steve Saling

Posted December 19th, 2012 by

Earlier this month, PatientsLikeMe Co-Founder and President Ben Heywood, along with marketing intern Jenna Tobey, went to visit the Steve Saling ALS Residence, which is part of the Chelsea Jewish Foundation’s Leonard Florence Center for Living in Chelsea, MA. The foundation has been providing high-quality care for over 90 years and includes the nation’s only specialized ALS residence.

The Steve Saling ALS Residence Is Located Within the Leonard Florence Center for Living in Chelsea, MA

When Steve Saling was diagnosed with ALS, a rapidly progressive neurodegenerative disease, in 2006, he immediately began to “secure a way to provide for care” as his condition advanced. His expertise as an architect, his keen interest in technology and his diagnosis all proved vital as he worked with Barry Berman, CEO of the Chelsea Jewish Foundation, to create the first-ever, fully automated ALS residence. This state-of-the-art residence soon became a reality and opened its doors in August 2010. Despite this tremendous accomplishment, Steve isn’t done yet. He has also created the ALS Residence Initiative in an “effort to duplicate the project nationwide.” The next facility to open will be in New Orleans.

PatientsLikeMe President and Co-Founder Ben Heywood Getting a Tour from Longtime PatientsLikeMe Member and ALS Activist Steve Saling

Steve greeted Ben and Jenna at the door and was excited to get the tour started. Unable to speak on his own, Steve communicates through a sight-based technology that can translate eye movements on a computer screen into audible speech. As he showed Ben and Jenna the residence, Steve demonstrated the independence that advanced technology and the center provide him by opening doors, turning on lights, operating elevators and changing TV channels. The foundation also encourages this independence by getting their residents out and about.  Steve described some of their recent excursions, like going to the movies, downhill skiing at Nashoba and traveling to Disney World.

The Dining Area of the Steve Saling ALS Residence

Steve became a PatientsLikeMe member seven years ago following his diagnosis. Since then, he has been a model community member, regularly updating his symptom reports and frequently chiming in on the ALS forum. In his PatientsLikeMe profile summary, Steve says, “I accept my new challenges and take a great deal of satisfaction in adapting to my losses.” The PatientsLikeMe ALS community is nearing 6,000 members, with patients learning from each other’s shared experiences every day.  Join the conversation anytime; they’d love to hear from you.

To learn more, check out the video below, in which Steve discusses “the dire need for residential living options for the chronically disabled.”

ALS & MS Residences at the Leonard Florence Center for Living from Steve Saling on Vimeo.


My War with Psoriasis: An Interview with British Blogger Simon

Posted December 17th, 2012 by

Welcome to the latest installment of our “Spotlighted Blogger” series.  Earlier this year, we focused on psoriasis bloggers, including Lissa, Alisha B., Jessica and Joni, and today we’re pleased to add a male perspective to the mix.  PatientsLikeMe member Simon’s witty blog, entitled My Skin and I, discusses his decade-long battle with psoriasis, a chronic autoimmune condition that can cause itchingrashes and plaques.  What has he learned along the way?  Find out that and more in our interview.

Psoriasis Blogger Simon of "My Skin and I" Relaxing and Enjoying the Holidays

1.     Why did you start blogging about psoriasis, and what’s the reaction been?

I started blogging as a way to vent my feelings. I don’t really talk about my feelings, even to my family, and found it very hard to explain what was going on in my head and in my life.

When I spoke to people about psoriasis, I kept a lot back and, to write it, even if I hadn’t published it, was a release. I decided to make it public partly as I needed my family to understand what I had been going through and also to help raise awareness.

The reaction has been positive.  I have been told I made a few people cry and even had other friends suddenly announce they also have the condition. This showed me that I wasn’t alone and that there are many people that feel the same way and hide their emotions. I am quite pleased that I haven’t had much in the way of sympathy as that’s not why I started the blog.  The worst thing is people saying, “you poor thing.”

2.     You write about your “war with psoriasis.” Are you winning these days?

Ask me this question on different days and I might answer it differently each time. I would say generally yes, although I have lost a few skirmishes lately. The last couple of months have been extremely stressful due to personal and work issues, which hasn’t helped, and psoriasis clings on to moments like that. Also, with the cold weather in the UK at the moment, especially with the sudden freezing weather, my skin is quite sore and dry despite using my creams.

My skin is still at a manageable state, though, and even though it has got a little worse over the last week, it’s nothing I can’t handle. I just have the slight wobble, then think of Christmas coming, and there has been plenty going on lately to keep my mind occupied. The dark space that psoriasis occupies in my head is quite small at the moment.

3.     You recently joined PatientsLikeMe. What’s your impression thus far?

My first impression is good. I haven’t been that active on the site but then I haven’t done much on the blog either recently, or on my food blog that I also write, purely because I’ve been so busy. The people I have come into contact with through the site have all been positive and friendly, which is great. There is a time when the purely psoriasis groups/sites get a bit depressive, and I find myself backing away.

What’s Simon’s other big passion beyond psoriasis awareness?  Food, as this photo of him preparing Coq D’Argent shows. Does he alter what he eats based on his psoriasis?  Click to read the answer.

Psoriasis does seem to bring a lot of anger with it, and I quite understand that.  I just wish my fellow sufferers were a bit friendlier to each other now and then. And there are some who are brilliant; in fact, you have interviewed a few already. It is quite sobering to read what others go through, and this helps me get some perspective on my own condition.

4.     What advice would you give someone who’s newly diagnosed with psoriasis?

I would say make sure you see your doctor (GP here in the UK) and ask for a referral if you think your skin is bad enough. Find one of the many supports sites, like this one, which can measure your severity. But if the doctor can’t seem to help you, ask to be referred no matter how bad your skin is. Also persevere with the medication, as your skin is very unique to you and, just because one treatment works for one person, doesn’t mean it will work for you. Give them time to work and, if there’s no response, try something else.

The other thing is to talk.  It doesn’t have to be to your family or anyone close. The most important person is your doctor – don’t just show them your skin, tell them exactly how it makes you feel. If you can’t tell anyone, then write it down. There are many support networks out there with people who have the same condition and who will understand what you are going through. One last thing:  do not give up the fight.

““““““““““““““““““`

Want to hear how other psoriasis patients are dealing with dry air, cooler temps and other seasonal changes?  Check out our recent Patient Voice report on coping with psoriasis in the fall.  Also, find all of our blog coverage of psoriasis here.