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Meg I am in process of getting another neurologist. Is this something I would have to get neuro to participate in? I take few PD drugs myself, l took carbo/levadopa during time my stimulators were off but don't think it helps much. When I get my new neuro in October I can get back to you. Ray -------------------------------------------------- From: "Meg Duggan" <[log in to unmask]> Sent: Saturday, August 28, 2010 10:15 AM To: <[log in to unmask]> Subject: 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 ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn