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graflexmaster

DBS Update

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Oakman    39

Thanks for your DBS updates. I have an Oct. appointment in Florida for a DBS evaluation and find them helpful. I'm still in the "honeymoon stage" for meds and my most troublesome symptom is gait, and the fact that the amount of levadopa needed to correct my gait causes dyskinesia. My MDS has suggested DBS for about two years now, mentioning the window of opportunity and that symptoms responsive to levadopa generally respond well to DBS. As you say, gait and balance problems are common for DBS patients, so you can imagine my struggle with the decision. Perhaps I will not pass the evaluation and my concern is a waste of time. Best wishes.

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baffo22    0

For those of you considering DBS...please check out my Uncle's story and video that was recently published in a local newspaper. It has changed his life.

 

 http://www.northjersey.com/news/bringing-buddy-back-teamwork-technology-restore-a-parkinson-s-patient-video-1.1380917

 

 http://www.northjersey.com/news/health-news/friends-raise-cash-for-parkinson-patient-1.1389405

 

Keeping you all in my prayers

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mickigarden    56

bafoo22  Thank you for sharing your video and article about your uncle's progress since having his DBS surgery.  I recently had it done and cannot believe my progress so far. It was a difficult decision to make but I am so glad I did.   Today I spent the day with 2 of my grandchildren working on arts and crafts.  This would have been impossible just a month ago due to my constant tremor and dyskinesia.  I know I still have a long road ahead of me but am eager to see where it takes me.  Micki

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baffo22    0

Micki,

 

So glad to hear of the success of your procedure and thank you for your kind words. Since that article was printed, he is doing much better and continues to do so every day. I wish you continued success on  your journey and hope that your days continue to be even better very soon. Godspeed...

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graflexmaster    1,182

Excellent article baffo....... Next time we're back there just North of Philly to see our daughter, I'd be honored to meet Buddy.....................and share stories..... and of course, a beer.

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graflexmaster    1,182

Well after my latest appointment with my Physical Therapist, it looks like I'll be giving up my faithful 2-wheeler....... Seems that my gait and balance is waaaay too unstable, and I freeze/fall way too much..... Gee Who wudda thunk??? She told me that if I want to ride, I need to get myself a 3-wheeler.......  So now I'm on the look out via Craigslist for a 3sp adult trike......  She also convinced me that it is time for me to finally make the change from my cane to a walker........  Yup, this has made my DW, my GF, and many others quite happy.....  in fact when I was talking to Dianne earlier, she said that I had waited well beyond what was safe..... and I should have done this some time ago....................

 

My Dr, also did a referral for me to see a SLP (speech therapist), because of my issues with swallowing, and my slurred speech.

Then we had a conversation about my Dyskinesia's, and the fact that I'm bi-phasic, and that bi-phasic Dyskinesia's are not well controlled by DBS, so She decided to add Amantadine 100mgs twice a day to help..... of course it came with her warning me about the major side effects..... ie. purple legs and hallucinations.............So here goes, we'll see what happens.......

to be continued.................. God how I hate this disease sometimes...........LOLOL

Edited by FlyBaby

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graflexmaster    1,182

Ok folks;

I just sent the following message to each of the current administrators here, as well as posting it to the "Ask the Surgical Team", also posting it to the  "NPF Forum Members Service Center" forum....... Please feel free to copy the following letter, and re-send it to everyone that I've listed above......... also remember to edit out my name at the bottom, and replace with your name

 

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

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