I jumped on the DBS bandwagon after my new neuro told me that it was my best option at this point. Of course, you have survive the qualification rounds, one of which is a trip to the neuropsychologist. He told me a lot of disturbing facts such as DBS causing 18 times greater chance of suicide than normal regardless of previous mental state.

He also loaned me a book that proved to be a very useful source of information called "DBS A Patient Guide to Deep Brain Stimulation" by DBS experts Sierra Farris, PAC and Monique Giroux, MD. I found it on Amazon and recommend it here in case it hasn't been mentioned before.

Hi Gerry,
I'm a fan of DBS having had it for over 13 yrs.
I found it upsetting both before and after the procedure what I perceived as negativity towards what could be and was a good outcome so please hear me out.
I saw on your posting you take Rytary 3 or 4 x Daily.
Is that the only anti parkinson med you're on?
It doesn't seem much when stretched to a 24 hr period and my thoughts are if that is your current drug regime then see a movement disorder Dr and see what he/she comes up with and go from there for maybe a yr or 2 or 3 before considering DBS.
Either way good luck and best wishes.

I had a friend who was only 2 years in with Parkinson's. He was someone I worked out with at the boxing gym. He was 51 years old, had a beautiful and supportive wife. They had just had a baby girl. He got DBS rather early in the disease because he wanted to be in top shape to care for his baby. He was beaming when he spoke of his wife and baby, he was so excited about being a dad. Out of the blue, he killed himself a few months later.
Sorry, I don't mean to be a downer - most people I know who've had DBS are doing great, but the suicidal thoughts apparently can be real.

Thanks for the kind wishes, Made it up. Rytary is all I take. My current Washington and past California neuros are both movement disorder specialists. The current one is reluctant to prescribe an agonist since I have fainted in the past.

Stalevo, which I tried, has a short on time, shorter than Rytary.
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The former neuro prescribed Neupro patches but I balked at the price so I never filled it.

My major problem has always been having little on time. A Rytary dose lasts 2 hours at best and sometimes doesn't work at all. Food is like an off switch.

Neither neuro was big on the MAO-B inhibitor possibility with one telling me that they don't work.

Neither neuro wanted to talk about unconventional approaches like zonisamide or palmitoylethanolamide. The new doc just said, "I don't prescribe it." She probably never heard of it. There isn't much time to discuss the possibillities, either. Before I can get going she announces, "Time's up."

The neuro said it was time to consider DBS even though she didn't think it would solve my walking problems. But she said it might so I said I would roll the dice even though a body MRI or diathermy after getting wired could kill me, among other warnings.

But I'm an optimistic guy and I believe I will do fine with DBS. How much bad luck can a Parkie have In one life?

I agree with Made It Up.

Perhaps I read your posts wrongly, but you seem to have spent a lot of time investigating supplements (which I consider a good idea), but not so much time investigating prescription drugs (which I consider a bad idea). And your doctors have not been generous in the amount of time they have given you in discussing the options.

I think before going down the DBS path you should explore again your Parkinson's drug options:

MAO-B inhibitors, e.g. rasagiline, can have a part to play in symptomatic control, and may also slow down progression.

Agonists, with their longer half-life, may have a part to play, even though you have had one bad experience.

You don't seem to be doing well on Rytary. I think there may be some advantage in going back to levodopa/carbidopa and exploring as many combinations of dose and timing as possible, including the relationship with your diet.

As I see it, most PwP find it easier to get their medication right in the morning, rather than later in the day. It makes sense, therefore, to begin your investigations with your morning medication. Also, it makes sense to only change one thing at a time. So, as a first step, while keeping your present drug regimen as it is, I would ask your consultant what she thinks about adding a dose of immediate release levodopa/carbidopa first thing in the morning. This should be titrated up from 50mg.

You mention walking problems, but it would help if you can find an exercise that you can do.

John

OK, Haven't been on lately for awhile, mostly because of
moving, others related to a commercial of sorts for a local TV
station (before somebody accuses me of being 'on the dole,') NOPE!!

Just wanted to say, after reading what Gerry said, I can't find any
mistakes or anything that I disagree with.

However, need to state clearly...the following:

If there's any way you can get approved for this procedure,
AND there isn't any reason to avoid it due to a medical reason, DO IT.

Look, any outcome pill-related is going to lead to a success I would
never describe as anything more than marginal. Period.

The link for the TV station appearance TV-5 Kansas City (4/19/17) is
still 'active', at least it was yesterday morning. If anybody wants,
I'd be glad to email it. If someone wants to argue, I'll just ignore it.

Needless to say, there is never a guarantee of success, and,
everything depends on the surgeon (Griffith - St. Luke's Kansas City).
We were lucky, we found the right guy. However, the experience, or
'adjustment' period, certainly hasn't been perfect. That has been a
story in and of itself, let's get through the operation/procedure first


David
drgoodmanls@hotmail.com

Hi John,

Thanks for your opinion. I have noticed over the years that your erudition and compassion have helped many who come here seeking advice or knowledge.

I have spent a lot of time investigating alternative medicine (I have a company in that field) but I am also a semi-retired pharmacist, so I have some experience with conventional medicine. I read a book on dosing levodopa and other treatments for PD but I do not find the cookbook to be as helpful as learning about what people do from reading this forum and others.

My problem has mostly been the short and erratic on times from the various levodopa products available. This might be related to taking the large doses of levodopa sans carbidopa previously in the Hinz protocol. Enzyme induction? At any rate, agonists were deemed to be risky due to having fainted 3 times for no apparent reason. The other side effects are almost as scary. I could go in that direction but the WA doc was not enthusiastic, either. I could add an MAO-B inhibitor but I have come across little enthusiasm for that by the docs or their patients on line. I don't need amantadine since I have mild dyskinesias, nor do I need apomorphine since my freezing is infrequent. That pretty much covers the drugs. That leaves the question of what DBS will accomplish that the meds don't.

It would seem to provide more on time and less feet shuffling so I can be more ambulatory again. I might go out socializing again without having to worry if my drug dosing intervals will be long enough to last through a dinner and a movie or whether it will stop working too soon just to surprise me or because I ate something more than a cracker. Maybe I could even feel well enough to exercise.

The current thinking is not to wait until you get too old or advanced in the disease progression to get a maximum benefit from DBS. Early moderate disease is the sweet spot. Neurosurgeon Dr. Vansickle in Colorado says it turns the clock back on your condition an average of 7 years. That would be great for me. I hardly had any symptoms then.

If I had information about the pharmacokinetics, i.e. drug absorption, distribution, metabolism, and excretion of levodopa, perhaps I could fashion a dosage regimen that made rational sense. As it is, I don't know why I can't
just pop another pill when I feel the current dose wearing off. Levodopa doesn't give me side effects to speak of and it doesn't accumulate in the tissues and elsewhere more than the smidgen in the neuronal vesicles that I know of.

I am not sure what titrating the morning dose will do. I already take a big dose of Rytary at 6 AM and that sometimes doesn't kick in, even with the occasional sleep benefit.

I appreciate your opinion and perhaps you are more familiar with this subject than I, but DBS looks like the option whose time has come.

Is there a DBS group that is up to date anywhere? The ones I saw are not updated. thanks.....I had it done 10/13/16