Jump to content
helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    
graflexmaster

A seperate forum for those of us with DBS

Recommended Posts

graflexmaster    1,182

Greetings:

I come speaking for all of us here on the forums that have DBS. We, as well as our caregivers, Would like to have our own forum. A place where we can discuss the in's and outs of our DBS. As well as a place where those folks with PD can ask questions about the procedure, as well as a place where they can discuss their fears openly.. It would also be a place where caregivers of PWP's can talk about how DBS has helped and/or changed how they take care of their PWP.

 

It seems that there is a forum that to us, doesn't seem to be used by anyone. The forum to which I speak is the "Kripalu Retreat Participants’ Forum" as it would appear that the most recent post was made on Nov. 3 2013 by someone that hasn't even signed to the forums since Nov. 15 2013.. That's almost 2 years without anyone using the forum... Seeing that the forum in question only has 2 topics and 1 reply, why can't you just unlock it and change the name to "The DBS Forum"? or otherwise, create a forum just for us....... and those facing DBS surgery..................

 

We have ALL asked individually, as well as called the 1800 4PD INFO line asking about our own forum, with zero response. So now I'm asking for all of us collectively. The only thing we were told last spring was that you were planning a revamp of the site in the summer, and that we should wait, as our request could easily be added then, but here we are well past the revamp, and it would seem that our requests were unanswered. A few years ago you folded the separate YOPD forum into the site here, and things went quite well. I guess the question is, do we need to leave the forums here? and go create our own site elsewhere? or will you at least acknowledge our request? because we feel we can help the most people here...... or we can create our site elsewhere and have one of us stay here for the sole purpose of re-directing those with questions about DBS elsewhere, to where they can have their questions and concerns answered,. That would mean taking all of our collective posts with us. Although we would much rather stay here, and have our own DBS Forum here.

 So basically, the ball is in your court......... CAN WE FINALLY HAVE OUR OWN FORUM???   A place where we can consolidate each of our stories about our journey through brain surgery, as well as helping everyone that comes looking for advice or has fears, etc.....

 

Thank you for listening and allowing me/us to vent

Michael

and all the other people with DBS, as well as everyone thinking about getting DBS

Edited by FlyBaby
  • Like 1

Share this post


Link to post
Share on other sites
Gardener    193

I think a separate DBS (and maybe other surgical approaches) forum would be helpful. I'm curious about the

effects of the procedure. I know that all cases of PD are different, but in general, does DBS smooth out the

fluctuations in symptoms that occur when one starts getting a short duration response from L-dopa? Does it

help with non-motor symptoms (to the extent that L-dopa does)? Does it cause other symptoms not generally

present with medication treatment? Gardener

Share this post


Link to post
Share on other sites
graflexmaster    1,182

Basically, DBS will help everything that L-dopa does. Thus allowing, in many cases, a person to lower their daily intake of L-dopa. This would lessen the problems of Dyskinesia.

Share this post


Link to post
Share on other sites
Linda Garren    734

Michael, I hope you get a good response and get the DBS forum up and running by someone in administration.  All of your points are good, and you made it clear how hard you've been trying to get a response.  Hard to understand, when this is such an important topic and is a forum needed by a number of people.  It could be a wonderful support and information area for people to find both in the forum as a whole and from outside of it, as well.

 

I wonder if some of your symptoms increasing recently could be from the stressful news and worry about your DW having MS?

 

At any rate, I'm asking the Lord to help you and your wife as you work though everything.  Your attitude is to be commended, and you haven't lost your sense of humor, which we all appreciate.  :-)

  • Like 1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


×