As you know, we like to just check in with our members to see how you’re doing as a person, not just a patient.  Today, we have a very special interview with one of our earliest members with ALS, SmoothS.  We sat down with SmoothS to talk about his recent building of the first ever ALS rehabilitation center – the Leonard Florence Center for Living, (LFCL) – which opened in November of 2010.  Along with the interview, below is a video of the grand opening event. Have a good weekend!

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	(Amy) Steve this rehab center rocks! Can you tell me what inspired you to start this project?
	(SmoothS) That easy; it is the horrible conditions in which a vented pALS is forced to live if you have no option to stay home. After my diagnosis, I was doing some research on my residential options when my care became more than my mother could handle alone. What I found was not pretty. There was nothing except for run-down nursing homes and chronic hospitals. I was discussing the problem with my friend Ron Miller and we tossed around the idea of a pALS residential co-op. I was at an ALS symposium in the spring of 2007 researching our idea when some people overhead my questions. They introduced me to Barry Berman who explained that he was considering building an ALS specialty residence with his proposed Leonard Florence Center for Living. It was important to me that an ALS Residence be fully automated and offer vent support. He agreed that it would and a beautiful relationship was born.The amazing thing is that we designed and built it in less than 3 years.
	(Amy) What was the toughest challenge in building this facility? What are you most proud of?
	(SmoothS)It has been one challenge after another but none of them proved exceptionally difficult to solve. Probably the biggest challenge was how to provide universal environmental control from a mobile wheelchair. I knew what I wanted to have but found that it didn’t exist. I found a programmer of home automation software and contracted him to build a comprehensive package based on my design. The system is now called PEAC (www.PEACpc.com) and is already being marketed to other health care facilities and we plan to also make a consumer product. I hope and expect that it will revolutionize the independence for the physically disabled.
	(Amy) At the grand opening you said that this was the first of hopefully many rehab centers that you want to be involved with, do you know where the next one is going to be?
	(SmoothS) We are having conversations with several cities such as Atlanta and Chicago. I am exploring several options to the model here but insist that any variations still be fully automated and provide vent support to anyone that needs it. I am actively marketing the project to several States and welcome any leads.
	(Amy) You are a dedicated member of the ALS community online with PatientsLikeMe and offline with the rehab center, What has that meant to you, to be involved in the lives of fo many people on and offline?
	(SmoothS) My work on the ALS Residence has been the most satisfying of my life. Obviously, because I will benefit from the project in a very personal way but I also get to help others at the same time. This would be the perfect job for me even without ALS. I get to utilize my life skills to continue being a productive and involved member of society. That is a lot more than many healthy people can say. I know that the ALS Residence Initiative keeps me focused on what I can do. Similarly, PatientsLikeMe is forum where everyone is equal. There is no disability in cyberspace. My connections to others is what keeps me going so ALSRI and PLM help me much more than I could help other people. I am happy that others may find help or inspiration in my efforts. Life is good.
	(Amy) Thanks so much for sharing, SmoothS!

When most people think of Parkinson’s disease (PD), they think of a shuffling gait, a shaky hand, and slowness of movement. As awareness has increased of the non-movement symptoms of PD, such as hallucinations and depression, we’ve seen the psychological consequences the disease can have too. More recently, studies in the scientific literature have been reporting on cases of excessive gambling in patients with PD, sometimes associated with the use of dopamine-agonist drugs such as pramipexole (brand name: Mirapex).

In the Parkinson’s disease community on PatientsLikeMe, we came across several accounts from distressed members who had suddenly acquired a significant gambling problem. One member wrote:

“I am spending a lot of money that i should not spend.  I wake up thinking about the lottery, I daily purchase lottery tickets, scratch offs, and often wish that I could get on the bus to go to the casinos… Help me before I spend all of our little savings.”

We set out to investigate further, setting up a research collaboration with Dr. Graeme MacPhee of the Parkinsons Disease Non-Motor Group (PDNMG) and Southern General Hospital (Glasgow, Scotland), who has carried out studies in this area in the past. Although previous studies had associated problem gambling with dopamine-agonist drugs, we wanted to find out if gambling might be elevated in other patients with a neurodegenerative movement disorder; maybe gambling was just an outlet for boredom or something that someone with physical disabilities could take pleasure in as a hobby. Therefore, we used a control group from our ALS community. Because users of our site are, by definition, web users, we were also interested to see if our users were more likely to be using online gambling websites than other reports in the literature. Finally, we wanted to know more about what was driving patients’ gambling behavior.

Because of the size and levels of engagement in our patient communities, we were able to receive responses from more than 400 patients in about a week. Normally, a study of this size would take several years and a team of researchers to carry out, showing the potential power of sharing and openness.

What did we find?

• We found a higher level of problem gambling in our PD population (as defined by the South Oaks Gambling Scale) than previous studies; 13% of PD patients as opposed to previous estimates of around 4%.
• Patients with ALS were much less likely to gamble; only 3% of ALS patients scored above cutoff for having a gambling problem, compared to estimated rates of 0.25-1.7% in the general population.
• The average “problem gambler” with PD had spent nearly $3,000 on gambling in the past 12 months, and an estimated $24,000 in their lifetime.
• The most common forms of gambling behavior were the lottery, slot machines, or visiting a casino. Gambling online using the internet was uncommon; only 2% of PD patients reported ever having gambled online, and just 2 out of 27 problem gamblers with PD.
• PD patient with problem gambling were more likely than ALS patients with problem gambling to say that their gambling was distressing or out of their control.
• In our study, problem gamblers with PD were no more likely than non-gamblers to be on a dopamine-agonist drug.

We were interested to find that our study produced a higher estimate of problem gambling in PD than previous studies. It could be that our population is biased or unusual in some way; we have a slightly higher proportion of young-onset PD patients, who may be more prone to gambling. We also suspect that people are more willing to admit to distressing or embarrassing behavior issues in an anonymous online survey as opposed to discussing it in the doctor’s office.

As more of these cases have come to light, warnings about compulsive behavior have appeared on the label of dopamine-agonist drugs such as Mirapex.  It is the responsibility of everyone involved in the care of people with PD to warn them of the risks. The more patients like those in our community share their real-world experiences of treatments and side effects, the more researchers, drug-makers, doctors, and other providers can learn to help minimize the risks and maximize their quality of life.

Wicks P, MacPhee G (In press) Pathological Gambling amongst Parkinson’s Disease and ALS patients in an online community (PatientsLikeMe.com), Movement Disorders Read the rest of this entry »

Did you know this April is both Parkinson’s Awareness Month and the 2-year anniversary of the PatientsLikeMe Parkinson’s community?  We invite you to celebrate with us all month as we share real-world patient insights and experiences of living with this disease…and we ask you to share on!

The PatientsLikeMe Parkinson’s community has come a long way since it launched in April 2007 – topping more than 3,400 patient members in just 24 months.  Our community members share so much about themselves on a daily basis – from details about how they manage their condition to their personal experiences and stories.  Why share?  Simply stated, to learn more about themselves while helping others better understand this condition.   In the spirit of awareness and sharing, this month we’ll share with you some of what we’ve learned so far from these inspirational individuals and keep it real with some personal patient stories about living with PD.

Additionally, later this month, PatientsLikeMe is once again sponsoring the Parkinson’s Unity Walk (www.unitywalk.org), “the largest single-day fundraising event for the Parkinson’s community.”  The event, which brings together thousands of people touched by Parkinson’s, takes place every spring in New York City’s Central Park.  PatientsLikeMe members from all over the U.S. will once again be meeting in New York to walk together as a team.  (Check out some of our onsite interviews with PatientsLikeMe members from the 2008 Unity Walk and keep an eye out  for 2009 highlights).

Stay tuned for more from us as the month unfolds. Until then, what else is happening this year for PD Awareness Month? Share your events or PD news in the comments below!

A year ago today, PatientsLikeMe launched our combined Mood community for patients with depression, anxiety, bipolar, obesessive-compulsive disorder and post-traumatic stress disorder.  It was first announced to the world in Thomas Goetz’s article, Practicing Patients, featured in New York Times Magazine.

Since then, more than 8,700 patients have joined the community, sharing detailed information about their symptoms, treatments and overall progress to learn more about themselves and others. Besides specific drug therapies (like Clonazepam or Lamotrigine), did you know many patients cite Listening to Music and Journal Writing as top treatments as well?  Check out what they have to say.

Do you have problems concentrating?  That’s the number one symptom reported by our members.  Other top symptoms include muscle tension, headaches, back pain and stomach pain.

In the coming weeks, we will continue to share some interesting tidbits about the community, including some powerful personal stories straight from our members.  Stay tuned!

13.1 grueling miles.  A half marathon.  Running that distance for anyone is a challenge that takes months of training and dedication.  Imagine running that distance having fibromyalgia.

My close friend and PatientsLikeMe member, Minnie Lee, has fibromyalgia and courageously ran in the Surf City Half Marathon last Sunday.  This wasn’t even her first time running it.  She has dedicated herself to running and finishing half marathons and triathlons despite her disease.  Pain or no pain, Minnie finishes.

PatientsLikeMe was there to sponsor and encourage Minnie to achieve her goal:  finish in under 3 hours.  “I run because so many people can’t,” says Minnie breathlessly through tears after crossing the finish line.  Supported by close friends Shirley Huang and Lilian Tham, Minnie finished strong despite the pain.

Yes, Patients Like Minnie can run 13.1 miles!

For more inspirational videos from our fibromyalgia community, visit www.youtube.com/PatientsLikeMeFibro.

Today, the PatientsLikeMe Multiple Sclerosis (MS) community welcomed its 10,000th patient member!

As we end 2008, more than 10,000 patients in our community are coming together to share their life experiences on PatientsLikeMe. How much experience is that? Try more than 32,000 YEARS of collective experience with MS.

More members than ever are sharing in-depth health information with each other, having repeatedly seen the value that this provides to others (and to themselves). Our forum is where members convene to find support and talk about all sorts of health-related topics, including MS-related treatments. Copaxone, Avonex, Tysabri, Baclofen, Rebif, Betaseron, LDN and 4-AP and others top the list of treatments discussed this year. In addition to our dedicated treatment evaluation reports, several members also use the forum to keep journals of their experiences with specific treatments to better help others understand these meds. There is also a good deal of discussion on dealing with other aspects of MS, such as depression, steroids, family and relationships, etc. To date, the forum has more than 17,000 posts.

Ready to share your experiences with us in 2009? Check us out to see what patients like you are doing to live their best life with MS.   Happy New Year!

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview one patient each month to find out more about how he or she approaches life. This month we are pleased to feature Lynette1400, a two-star member.

What are you thankful for?

A loving husband and family, wonderful friends, having had an interesting and exciting life, Social Security, Medicare, and pensions!

What do you have an abundance in your life?

A) Love and laughter.
B) Time to do all the things I want to do but didn’t have time for when I worked. Because of this, I am busier than ever.

What is your favorite holiday memory?

There have been so many. When my three children were little, we spent Christmas Day at my mother’s. After dinner, she played the piano and my Dad and the whole family, including my three brother’s families, stood around the piano and sang Christmas carols while the children played with their new toys.

It was like the Christmases in our family when I was a child. After the kitchen was cleaned up, the families would all sit around card tables and play card games. The grown-ups would patiently teach us children how to play. Then after that we would have a supper of turkey sandwiches and leftovers. Then on the long drive home we four children would all fall asleep

Describe a typical Thanksgiving in your family.

We have a traditional Thanksgiving dinner with all the fixings, which is planned for about 4 p.m., but we usually get to sit down by 5 or 6 pm. Present are my husband, me, my son and his wife, my daughter and a friend, my brother-in-law and a neighbor of his. I try to include those who do not have other plans for the day or those without family here. Everyone brings something.

It is a lovely and very tiring day for me. This year my son and daughter-in-law are having the celebration at their home, and in addition to the above guests, her parents, a girlfriend and her daughter and her brother will be there. She sets up a badminton net and the younger ones participate. She is a very good cook. I bring two pumpkin pies and probably two chocolate pecan pies.

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview one member each month to find out more about how he or she approaches life. This month we are pleased to feature chethk, a two-star member.

Where do you find joy?

I find joy by being with my family, friends, co-workers, and customers; participating in life’s daily adventures and challenges; and giving 110% effort with every task I undertake everyday.

What person do you admire most?

My wife Kate for being the mother of my two children and putting up with me.

How have you evolved since your diagnosis?

I have had Parkinson’s for 14 years. It started as a nuisance, it is now a disability. I don’t believe a person evolves when facing a progressive disease; rather, a person either resolves to fight it everyday or give in to the symptoms and wither away. I have made the choice to find a way to overcome the ever-changing symptoms of Parkinson’s everyday.

What have you learned from PatientsLikeMe?

I have learned there are others with PD who have the same emotions, fears, anger, and resolve to fight this disease until a cure is found. We do not want others to feel sorry that we have Parkinson’s, but we do appreciate their acceptance of our outward symptoms and everyone’s financial donations to medical research that will lead to a cure.

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview one member each month to find out more about how he or she approaches life. This month we are pleased to feature iowa, a two-star member.

What is your favorite time of day?

Well, when I was first diagnosed 2 1/2 years ago, it was the first five minutes [of the day]; things went downhill in succeeding minutes due to my very low stamina.

Nowadays my favorite time happens to be the first five minutes as well, but as a prelude to a wonderful day. That’s when my wonderful husband of 33 years brings me my morning cup of coffee in bed made to exact specifications. The coffee I mean. In these five minutes while I am regaining consciousness, I sip the sweet brew and reflect on how blessed I am and thank the Blesser.

And then, being an incurable Type A, I make a list of some sort, which, in retrospect, is kind of silly since being an incurable Type E (easily-distracted), I rarely stick to it. My second favorite time of day is naptime, from which simple pleasure I am rarely distracted.

What makes you laugh?

Almost anything, mostly because laughter releases endorphins and having frugal Dutch ancestors, I figure any drugs I can get for nothing is a plus. Plus, it loosens up my face, like when I began using the Neupro patch, which lists as possible side effects compulsive behavior such as A) “increased sexual desire” and B) “gambling too much.” Three minutes after I’d applied the first patch, my wonderful husband of 33 years queries expectantly, “Well??” To which I responded, “Nothing in category A, but ya wanna play Bingo?”

What would people be surprised to learn about you?

Considering what I’ve already shared, probably not a blessed thing. I’m your ordinary 52-year-old coffee-sipping, nap-loving, laughing, Bingo-playing gal. And not many of you would be surprised that I have found being diagnosed with PD to be a God-rediscovering experience, since [many of] you have had a similar experience.

How has PatientsLikeMe improved your life?

It might be too soon to know, but I suspect reading about and comparing notes with other ordinary real people will be helpful, not to mention inspiring. Inspiration is good. Right up there with laughter. And coffee. And naps.