After the popularity of my recent post “19 Things You May Not Know About DBS”, I had many questions from my readers. And as I have said before, I am not a Doctor and all though I am freakishly smart, you should probably followup with someone who is a little more serious than myself. Who better than Medtronic?! Yes, I do have friends in high places. Wink! So I am delighted to announce that starting today, you can submit any question you might have bouncing around in that brain of yours about Deep Brain Stimulation (DBS). I will be accepting questions until November 21st at midnight (PST). Then come back to my blog on December 1st to see the 10 questions that were answered by Medtronic, who is the oldest and most used manufacturer of Deep Brain Stimulation Technology. This is more exciting than riding on the back of a unicorn while eating Frozen Yogurt! What?… No one else has this fantasy?
Now, for the fine print…. There are three ways to submit a question:
1. You can post it to Perky Parkie on Facebook or Twitter (Messaging me works too!)
2. You may also comment on this blog post with a question.
3. You may use the “contact me” link to send over your questions.
Then, subscribed to my blog… if you want to be cool… or check back on December 1st for the questions that were answered by Medtronic. So if you have ever wondered what you would ask a Medtronic if you had the opportunity… here is your chance!
Wonderful post! We are linking to this great post on our website.
Keep up the good writing.
Had DBS in April 2011. What a glorious day that was!!! Since have had 1 battery replacement and have turned up the device significantly.
My question is what does the future hold for me? More and more frequent battery replacment? Rechargeable? Is there a point where DBS stops working?
.I’m not an expert on DBS nor a doctor–but I don’t mind if you’re freaky. I will be meeting with a psychologist this coming Monday–they instructed me to come without taking my Parkinson’s meds-then the doctor will see just how gimped up I am without them. then I get to take them along with 3-4 hours of testing. I’m betting they know it’ll take that long to do it before the pills kick in– ha ha! You didn’t see Michael madsenn in Resevoir dogs–if you do get to see it you’ll see him do a crazy dance. I just mentioned it because he had a little smile that clicked with me when I found myself able to get up and dance too.
I don’t know too many people who have Parkinson’s or who had DBS–the few I do are all online like you. I am regularly on display for non parkies to watch as I go walking in public. who knows? if the surgery goes well and the new hoverboard company comes down to an affordable price then maybe I might get mistaken for Michael j fox on his toy.
Do you know if they can spot lewy bodies when they a re installing the wiring for DBS?
Well done Allison!! I too, have been invited by Medtronic to speak with them – not yet….too many other things going on here in my lil’ life o’ chaos! So I applaud your efforts to get the ball rolling!
To ANA: the answer to your question is NO.
In fact there’s a lot of medical publications that have proven the validity of having DBS BEFORE Levadopa (in all it’s various compounds) reaches ‘max-out’. And although it’s not just the above that cause toxic pay-back, there’s a finite quantity of L-Dopa you can introduce into your system because it’s a one-way street: one is the dreadful side-effects caused as you reach max-out (due SOLELY to toxicity of pharmaceutical intervention – imagine you keep popping headache pills every few minutes (say..you’d ‘forgotten’) – you’d end up in overdose, with all that entails.
Two would be; there’s no ‘going back’. It’s not like you can take a couple of years vacation from it and return to where you were that two years prior (like anyone would take that holiday anyway!). Artificial L-Dopa (as in your meds), is a substitute…a very good one, for what your brain cannot produce; the down side is it also basically encourages your brain to not produce…if you catch my drift? For example, it’s my husband that has the PD – I don’t. If I were to start taking his meds, my brain would respond by producing less viable L-Dopa. It’s a bit of a conundrum because nothing’s as good as the real thing! So the anomaly is, PDers can’t produce Dopamine – L-Dopa is the chemical replacement. But, by introducing the substitute, it further increases any chance of the brain producing its own dopamine.
Thus, if you were to say, get DBS at an earlier stage of the game – like 2 or 3 years in – that ‘max-out’ would be deferred greatly (given that the ‘honeymoon effect’ lasts anywhere from 5 – 7 years).
That’s the easy bit: the harder bit is getting this by your Doctors, health-systems etc. And just to leave you spinning, there are many conflicting reports of WHY dopamine production in PD patients slows, then stops. As to PD pts., is it that the dopamine neurotransmitters are dead or dormant? Are the Neuro-Receptors that the dopamine binds with at fault? I could go on and on….but I’m fairly sure you’ve sufficient to go on with?
DBS allows L-Dopa reduction to about half of what you were on at the time – a huge boon to those you have waited until max-out to get DBS. The last thing? I have spoken to many, many people who have has this procedure. NOT ONE – regardless of who’s device (which company) – would be willing to ‘give it back’!! Sure, there are some awful testimonies out there, but those still remain a tiny minority.
Question! Does one really need to exhaust all medications before being considered for DBS? Or can the surgery be performed sooner?