 |
 |
Jackie and all - I'm trying to write an app for DBS - some kind of logging program to give the programmers a clear view of what is happening and when its happening. It is my hope that there is a way to smooth out the long road of getting the programming sorted. I'd love to hear some feedback from you all - what things would be helpful to track during this process etc...Equally - if it would NOT be helpful to track symptoms etc. Any input at all much, much appreciated! Thanks, Meg -----Original Message----- From: Jackie Christensen <[log in to unmask]> To: PARKINSN <[log in to unmask]> Sent: Thu, Mar 24, 2011 1:01 am Subject: Re: DBS At the risk of sounding self-serving, I am going to recommend my book, "Life ith a Battery-Operated Brain: A Patient's Guide to Deep Brain Stimulation or Parkinson's Disease." It follows my journey from evaluation to living ith the device years after surgery. I surveyed 55 others who'd had DBS so t includes info from their experiences too. I wrote it because there isn't uch written from a patient's perspective FOR patients. Anyway, I've gotten lot of good feedback that it's been helpful. YOu can probably find it at our library to see if it would be helpful. If you want to buy it, you can et it on Amazon or at www.lifewithbobbook.com. Your situation sounds very imilar to mine. DBS has been a godsend for me but is definitely not for veryone. It also is NOT a cure and doesn't halt progression of the disease. nother great resource is www.dbs-stn.org, a website run by The Parkinson lliance. call me if you'd like: 612-325-0372. Best wishes, Jackie Hunt Christensen On Tue, Mar 22, 2011 at 12:40 PM, <[log in to unmask]> wrote: > I am writing for some advise and support. I am 58 and have been diagnosed for 10 years. I was taking sinemet 4x day 25/250 and comtan 200 mg 4x. My doctor recently changed me to stalevo 200mg. 5x per day. My dyskiniseas on all the medications are getting bad and my on time is getting less and less. If lucky I might get 2 hours of on time between each dose. When tired or under stress sometimes the medicine doesn't even work. My doctor is recommending DBS but I don't know what to do. I live on Long island outside of Manhattan. My question is, has anyone had the surgery and did it help? What is everyone's experience with the surgery? I plan on getting a second opinion can anyone recommend someone in this area? My movement disorder doctor and the surgeon are associated with North Shore University Hospital. By the way, I am still working as a teacher but think I will have to give it up shortly. Janet ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto: [log in to unmask] In the body of the message put: signoff parkinsn -- ackie Hunt Christensen arkinson's disease and environmental health activist and author cell phone: 612-325-0372 -mail: [log in to unmask] "What shall we choose? Violence or non violence? …We have to choose knowing hat when we are violent to our enemies, we do violence to ourselves. When e brutalize others, we brutalize ourselves. And eventually we run the risk f becoming our oppressors. - Arundhati Roy “To answer brutality with brutality is to admit one's moral and intellectual ankruptcy.” - - Gandhi ---------------------------------------------------------------------- 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