Guest guest Posted April 18, 2011 Report Share Posted April 18, 2011 this video about the co. might explain the site better http://www.youtube.com/user/PatientsLikeMe2008 and on CBS > > Lewy Body Dementia is now a recognized condition on the website patientslikeme.com... What is this site? > > It's a website that you " Share your experience. > The more you share, the easier it will be to find patients like you. Start by adding a condition, symptom or treatment. " > > " Imagine knowing what treatments work for people just like you — and having the ability to easily connect with those people. That's what makes PatientsLikeMe different. By sharing your symptoms, treatments and more, you can gain insight into what affects your condition while helping others learn from your experiences. Together, we can achieve more. Begin making a difference today! " > > This is what makes this site so interesting - you share the medicines and the more people who share the information the more useful information there is to pull. > > LBD was recently introduced - so only 2 people so far... > > if you Search patientslikeme on this board you'll notice that I brought this site up before and how interested I was that LBD be part of it - at the time PD was a condition that had a large following... > > I wrote a couple of letters to Patients Like Me expressing that they have LBD included... (the co. is based out of Cambridge, MA and I actually applied to work there one time - how perfect of a job would that be for me - it'd be like doing what I'm doing now but getting paid! )... anyway... I don't think it was my letter that led to them opening it up to LBD - b/c the email noticed I received entitled " PatientsLikeMe Now Open for Your Conditon " didn't list LBD but read " PatientsLikeMe is now open for everyone, with any condition, to join! " > > Again the title is 'patientslikeme' -- so they're assuming the loved one will be using this site - maybe good for early stage (maybe done by the help of a caregiver??) > > Anyway - thought some of you would be interested in checking it out: > http://www.patientslikeme.com/conditions/598 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2011 Report Share Posted April 22, 2011 What a pity the condition is listed as " Lewy body disease. " Lewy body disease includes Parkinson's Disease, PDD, DLB, and Pure Autonomic Failure. > > Lewy Body Dementia is now a recognized condition on the website patientslikeme.com... What is this site? > > It's a website that you " Share your experience. > The more you share, the easier it will be to find patients like you. Start by adding a condition, symptom or treatment. " > > " Imagine knowing what treatments work for people just like you — and having the ability to easily connect with those people. That's what makes PatientsLikeMe different. By sharing your symptoms, treatments and more, you can gain insight into what affects your condition while helping others learn from your experiences. Together, we can achieve more. Begin making a difference today! " > > This is what makes this site so interesting - you share the medicines and the more people who share the information the more useful information there is to pull. > > LBD was recently introduced - so only 2 people so far... > > if you Search patientslikeme on this board you'll notice that I brought this site up before and how interested I was that LBD be part of it - at the time PD was a condition that had a large following... > > I wrote a couple of letters to Patients Like Me expressing that they have LBD included... (the co. is based out of Cambridge, MA and I actually applied to work there one time - how perfect of a job would that be for me - it'd be like doing what I'm doing now but getting paid! )... anyway... I don't think it was my letter that led to them opening it up to LBD - b/c the email noticed I received entitled " PatientsLikeMe Now Open for Your Conditon " didn't list LBD but read " PatientsLikeMe is now open for everyone, with any condition, to join! " > > Again the title is 'patientslikeme' -- so they're assuming the loved one will be using this site - maybe good for early stage (maybe done by the help of a caregiver??) > > Anyway - thought some of you would be interested in checking it out: > http://www.patientslikeme.com/conditions/598 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2011 Report Share Posted April 24, 2011 Let me try again!~ Cared for Mom 3 years in my home and the last year at a nh. She passed away from LBD in 2002. Re: Patients Like Me What a pity the condition is listed as " Lewy body disease. " Lewy body disease includes Parkinson's Disease, PDD, DLB, and Pure Autonomic Failure. > > Lewy Body Dementia is now a recognized condition on the website patientslikeme.com... What is this site? > > It's a website that you " Share your experience. > The more you share, the easier it will be to find patients like you. Start by adding a condition, symptom or treatment. " > > " Imagine knowing what treatments work for people just like you � and having the ability to easily connect with those people. That's what makes PatientsLikeMe different. By sharing your symptoms, treatments and more, you can gain insight into what affects your condition while helping others learn from your experiences. Together, we can achieve more. Begin making a difference today! " > > This is what makes this site so interesting - you share the medicines and the more people who share the information the more useful information there is to pull. > > LBD was recently introduced - so only 2 people so far... > > if you Search patientslikeme on this board you'll notice that I brought this site up before and how interested I was that LBD be part of it - at the time PD was a condition that had a large following... > > I wrote a couple of letters to Patients Like Me expressing that they have LBD included... (the co. is based out of Cambridge, MA and I actually applied to work there one time - how perfect of a job would that be for me - it'd be like doing what I'm doing now but getting paid! )... anyway... I don't think it was my letter that led to them opening it up to LBD - b/c the email noticed I received entitled " PatientsLikeMe Now Open for Your Conditon " didn't list LBD but read " PatientsLikeMe is now open for everyone, with any condition, to join! " > > Again the title is 'patientslikeme' -- so they're assuming the loved one will be using this site - maybe good for early stage (maybe done by the help of a caregiver??) > > Anyway - thought some of you would be interested in checking it out: > http://www.patientslikeme.com/conditions/598 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2011 Report Share Posted April 25, 2011 I don't know why the site used " Lewy Body Disease " vs. " Lewy Body Dementia " -- I'm just happy they are opening their site to " Lewy Body " ... > > > > Lewy Body Dementia is now a recognized condition on the website patientslikeme.com... What is this site? > > > > It's a website that you " Share your experience. > > The more you share, the easier it will be to find patients like you. Start by adding a condition, symptom or treatment. " > > > > " Imagine knowing what treatments work for people just like you � and having the ability to easily connect with those people. That's what makes PatientsLikeMe different. By sharing your symptoms, treatments and more, you can gain insight into what affects your condition while helping others learn from your experiences. Together, we can achieve more. Begin making a difference today! " > > > > This is what makes this site so interesting - you share the medicines and the more people who share the information the more useful information there is to pull. > > > > LBD was recently introduced - so only 2 people so far... > > > > if you Search patientslikeme on this board you'll notice that I brought this site up before and how interested I was that LBD be part of it - at the time PD was a condition that had a large following... > > > > I wrote a couple of letters to Patients Like Me expressing that they have LBD included... (the co. is based out of Cambridge, MA and I actually applied to work there one time - how perfect of a job would that be for me - it'd be like doing what I'm doing now but getting paid! )... anyway... I don't think it was my letter that led to them opening it up to LBD - b/c the email noticed I received entitled " PatientsLikeMe Now Open for Your Conditon " didn't list LBD but read " PatientsLikeMe is now open for everyone, with any condition, to join! " > > > > Again the title is 'patientslikeme' -- so they're assuming the loved one will be using this site - maybe good for early stage (maybe done by the help of a caregiver??) > > > > Anyway - thought some of you would be interested in checking it out: > > http://www.patientslikeme.com/conditions/598 > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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