Calling all young onset people...

Yep, you read it correctly. I visited my new neurologist (third visit) to switch from Mirapex and left with thoughts of brain surgery. Mind you, he's the director of the DBS program at our university hospital, but still...

I left feeling horrified and unbelieving that things could be so bad that he would suggest taking advantage of DBS now. I'm only officially 2 years in, though symptomatic and med free for 7 years prior. I don't know my Hahn & Yoehr whatever number they assign to our 'progression'(reality check, the right word is degeneration) - I am still unilateral with a dominant tremor, no freezing, or falling.

Why so early? True, I started levodopa therapy almost right away, as I cannot tolerate agonists at higher doses. I could never have maxed out on agonists for a few years before dipping into the PD Fort Knox Pharmacy. My meds when I'm on work phenomenally well and,so much so, that when I saw this new neuro, he was not even sure I had PD- I had to visit him again after a 12 hour drug washout.

The problem is of course inadequate delivery of Sinemet where we have on/offs, and no even, steady supply of what our bodies need most. I have to dose way more frequently than I would like (still at lowest dosage of 25/100) and have some mild dyskinesia; it was a rude awakening to realize that this was only drug that really worked for me and that in reality other things like Comtan give you an extra 30 minutes- not at all worth it. So now 2 years in, my life depends on eating little yellow pills every 2-3 hours; less than thrilled, but hey, we adapt. The drug works fine and Requip may buy me an hour- dyskinesia at minimum. So why DBS, why now?

Perhaps, the scariest thing is that my neuro is makes sense to me. I have a 10 month old who wears me out in the best possible way- I don't want to be wracked with dyskinesias in 2 more years or not be able to play ball with him in the yard. I want to be at every stupid, muddy, <soccer> practice there is, and not hiding a shaking hand or keeping my good one on a pill cutter in my pocket. I want to bake him cupcakes from scratch until we run out of icing and have stomach aches, not worry about that tingling in my fingers that signals a 'time out' for any activity. Hey, I'm already an older mama, that's what was in the cards for me, I do not need any help in the feeling old department. Financially, I must continue working. It's weird because I don't feel that disabled now but know that my professional life, in fact, near everything I can do, is tenuous at best- there is a very thin ply yarn silently, relentlessly unraveling as I type.

In other words, I could get near to my pre-PD 'life' back for 5-10 years and be much better in the years my son will most likely need me the most. I only hope that within that time we will have newer treatment options open to us. If not, I go back on Sinemet and hope for a second honeymoon.

These are some things I learned about DBS with some questions.

There is a trend among MDS to recommend surgery when symptoms are still relatively mild in belief that when DBS is removed, that we will essentially remain clinically stable. There are some studies that support this and of course the scads of clinical trials seeking to prove neuroprotection.

According to my neuro, DBS is only as effective as your best response to medication is, so for now I would be symptom free. As the drugs lose their ability to mask our symptoms, so does DBS. In other words, with DBS we have an optimal window for pursuing and gaining the best benefit. I was surprised to learn this and even more surprised that we are not told this early on.

Of course, I tell myself it's crazy to do all this now...it's brain surgery, risk of hemorrhage, infection, etc. but younger means we are at less risk for these things. I know there's always a trade off with our treatment and worry about what that might be.

Am I crazy to even contemplate this now? Geez, right now I'd sell my soul to Daniel Webster to not have to get up tomorrow and start my day with a pill. When I look at my son, it feels right for me. I didn't think I'd have this is an option, sort of saw it as a last resort.

From a patient advocacy side, is it right to 'push' DBS early on? Should we be concerned about this? It's not like everything is disabling right now, but the unknown relationship I have ahead of me with Sinemet scares me, and I am realizing that the stress of that unknown is really making things worse.

I would appreciate any strong opinions, DBS stories, any subtle guidance, warnings, little known side effects, happy shiny anecdotes, a crystal ball, and most definitely a shot of really good bourbon.

Laura