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Sounds good. You don't actually have to get your neuro to participate - tho we will. If they won't go look at your stuff - you can always print it and take it. We are hoping that we the time saved, the neuros will use this, but recognize a bottle neck when we see one. I'll stay in touch with you and with the list and let you know what we are learning and doing. I'm so glad you are feeling better Ray! -----Original Message----- From: Rayilyn Brown <[log in to unmask]> To: PARKINSN <[log in to unmask]> Sent: Mon, Aug 30, 2010 1:00 am Subject: Re: Rayilyn & Others Interested/beta testing Meg am in process of getting another neurologist. Is this something I would ave to get neuro to participate in? I take few PD drugs myself, l took arbo/levadopa during time my stimulators were off but don't think it helps uch. When I get my new neuro in October I can get back to you. Ray -------------------------------------------------- rom: "Meg Duggan" <[log in to unmask]> ent: Saturday, August 28, 2010 10:15 AM o: <[log in to unmask]> ubject: Re: Rayilyn & Others Interested/beta testing > We are going to try to" sell" it to the doctors as a time-saving device. Those I have met with believe it will save 5 to 10 minutes per appointment; apparently getting an understanding of on/off takes a great deal of time. It will also, we believe, help with between appointment phone calls. It is our hope that doctors will ask patients to use the device to self monitor, particularly after a medication change or in periods of disease progression. Each physician will have their own log in page - one button - with only their patients listed there. One click and they can view a clean chart of on/off, dosing times, peak dyskinesias and peak performance. Of course from our side - the hope is that time saved can be used to discuss other things - not merely shortening already too short appointments. And that patients have a new way to communicate with their physicians. Hopefully the information will lead to faster and better interventions - and not having to wait 6 months to get meds changed when they need to be. I recognize it may be an uphill battle - but its one I'm willing to take on. I feel like PD patients are often isolated from their neurologists and don't get the on-demand services they deserve. I'd love to get everyones thoughts? Its going to cost me about $60,000 to build - so if I'm all wet let me know please! Weigh in - this is a PD community project... -----Original Message----- From: haphill <[log in to unmask]> To: PARKINSN <[log in to unmask]> Sent: Sat, Aug 28, 2010 1:00 am Subject: Re: Rayilyn & Others Interested/beta testing I'd be happy to try the wwebsite - don't hsve a smartphone. ow do you propose to get a doctor to pay actual attention to the results ? btw, I don't have off-periods tho I do have occaisional mornings when I can't alk (main PD prob is a dragging left leg) Amanda Quoting Meg Duggan <[log in to unmask]>: > I'm working on a website and smart phone app for PWP - basically an > on/off tracker that graphs and charts and goes straight to neuro. For when meds change, in periods of disease progression etc... MDS I have talked to say 5 days would give them a clear picture of what is happening, allowing them to change meds, make intermediate appts when necessary, save time etc... I'm looking for people who will try it out for a few days at mid-design stage and give me feedback so we can make it as utile as possible! Anyone and everyone - the more the merrier! -----Original Message----- From: Rayilyn Brown <[log in to unmask]> To: PARKINSN <[log in to unmask]> Sent: Thu, Aug 26, 2010 1:00 am Subject: Re: Rayilyn & Others Interested thanks for offer of help hat is beta testing??? -------------------------------------------------- rom: "Meg Duggan" <[log in to unmask]> ent: Monday, August 16, 2010 5:58 PM o: <[log in to unmask]> ubject: Re: Rayilyn & Others Interested > Ray- What a pleasure to see your post! The list has been so quiet I was afraid that people had migrated somewhere. I've started a new venture to do some apps for PWP - and I'm hoping you'll agree to be a beta-tester for me and give me feedback on what we are attempting. In return, I'll give you free access to the stuff we come up with for life. Anyone else interested? Looking for 20 or 30 people to test out new ideas - sign on and review what we come up with - give feedback, and use it for life! I'm really excited about some of the stuff we are coming up with to help patients communicate with their docs between visits and gather vital information. Please email me at [log in to unmask] if you are willing to give us just a few minutes of your time! Thanks everyone - Meg -----Original Message----- From: Rayilyn Brown <[log in to unmask]> To: PARKINSN <[log in to unmask]> Sent: Sun, Aug 15, 2010 1:00 am Subject: Fw: Parkinson's Disease News Duodopa pump for PD; also 17th century treatments for PD rom: Viartis ent: Saturday, August 14, 2010 1:56 AM o: Parkinson's Disease News ubject: Parkinson's Disease News ARKINSON'S DISEASE NEWS A new article has just been added to Parkinson's Disease News : Parkinson's Disease News (high resolution version) : http://www.viartis.net/parkinsons.disease/news.htm Parkinson's Disease News (low resolution version) : http://viartis.net/parkinsons.disease/news.LR.htm If you have difficulty accessing the web site, notice errors, dispute what is ritten, want to propose articles, or want to unsubscribe please e-mail [log in to unmask] ---------------------------------------------------------------------- o sign-off Parkinsn send a message to: mailto:[log in to unmask] n the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- o sign-off Parkinsn send a message to: mailto:[log in to unmask] n the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn --------------------------------------------- his mail sent through http://www.ukonline.net ---------------------------------------------------------------------- o sign-off Parkinsn send a message to: mailto:[log in to unmask] n the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- o sign-off Parkinsn send a message to: mailto:[log in to unmask] n the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn