Parkinson’s Community website

[Rebtar]

Anyone know what this is? I must have signed up for the information on a “bad” day (i don’t remember signing up) because i received a call from a very nice man yesterday who spent an hour reviewing my situation and suggested i might look into Gocovri or Apokyn for off times and mild dyskinesia…and that he would pass this on to my MDS.

Then i thought…maybe this is a site that tries to steer patients to try these new, expensive meds!! Is this really a backed by the pharmaceutical companies?

Anyone know if this is so? I looked through the website, there’s no “about us” saying who is behind it, who are the founders, just a “mission” section that tells a story about a PD patient climbing a mountain with their support. The only name mentioned is Dr Rajeev Kumar, head of a movement disorders center in Colorado, as their medical director.

Anyone know who these people are? His website says his center is a “leader” in treating movement disorders. I tend to be trusting and sometimes naive, especially when i haven’t slept and feel like crap.

Anyone know who these people are? Did i sign up fir something shady?

movementdisorderscenter.org/

[park_bear]

It appears that he is who he says he is but his ratings are mixed:

healthgrades.com/physician/...

[Rebtar in reply to park_bear]

yes, i saw the mixed ratings.

[MBAnderson]

I don't think its a scam, but it is curious that someone called you. There was probably language in what you signed up for that provided for a call. Did he say he is a doctor? Perhaps just looking for new patients. That he spent an hour is impressive. That he said he would pass these suggestions to your MDS (which your MDS may not appreciate.) Curious indeed.

medicalnewstoday.com/provid...

[Rebtar in reply to MBAnderson]

the call wasn’t from him. The very nice man who called said he was from “Parkinson’s Community”, and they were not selling anything. The website says they have 26,000 “members”.

I wonder if that doc gets kickbacks from pharma companies, if the people they talk to end up using those meds.

I’m on medicare now and none of the part d formularies cover these drugs. They’re probably having a really hard time selling them, really expensive, even the generic of Apokyn…

[Rebtar]

They have a Facebook page with more than 20K members... so it's more than just Dr. Kumar's business.

[Kat343]

I initially tired to get my husband in to see Dr Kumar based on a recommendation from my nephew WP's specialist. I too found the mixed reviews, and spoke with his office manager who said bottom line, Dr Kumar helps many people and she left another office a few years back because she wanted to work only for him because of his results. We decided to go another route however since he is far away from us. He is legit!