Brief Answer:
Parkinson's disease meds universally problematic

Detailed Answer:
Good morning and allow me to introduce myself. My name is Dr. Saghafi and I am a neurologist in XXXXXXX OH. I trained under one of the premier movement disorder specialists in this part of the country and can tell you that your husband's problem is unfortunately all too commonplace.

There are so many different medications for PD and combinations of the same that could be tried that the lists are endless. For example, I could ask you about the different forms of the carbidopa/levodopa that have been tried. Regular type (i.e. traditional and common 25/100 forms) or the CR form (Continuous Release: 50/200) which is typically given twice a day. Then, there is a drug called COMTAN which allows one to use LESS carbidopa/levodopa in theory by increasing the half life of the drug. You've already mentioned Neupro though I'm not sure what is exactly meant by "overdosing on the patch." I assume you mean he had cognitive side effects....this is commonly seen.

As a standalone drug and even in combo with carbidopa/levodopa it is not likely to result in noticeable differences in his ability to move about if that's the result you're seeking. Drugs such as Neupro, Azilect, Eldepryl, and others are designed with the idea of "slowing" down the disease, not really attacking the problem which we believe is the depleting stores of dopamine in the brain. Then, there are the autonomic SIDE EFFECTS and the COGNITIVE issues that go along with all these drugs by lowering blood pressure and making people feel overmedicated, confused, lower blood pressure, and heart rate which can be bad in people who may have heart conditions or BP problems to begin with.

I didn't even mention the entire class of dopaminergics that are add-ons to carbidopa/levodopa such as Mirapex and Requip and then, and Combo drugs such as Stalevo. Has your neurologist mentioned any of those? Again, good drugs if they work....bad drugs if they cause side effects and my prediction from what you're saying is that they would likely cause some degree of side effects since he's not even tolerating the minimum doses of the carbidopa/levodopa anymore without problems.

However, you should know that both Mirapex and Requip can be used as stand alone drugs. They have a slightly different mechanism of action and can be titrated upward extremely slowly. I usually take anywhere from 4-6 weeks to completely get to a therapeutic level on those drugs in patients who are suffering from side effects.

But here are 2 things (1 of which I'm sure you've heard about) and the other, maybe not. And I recommend both when necessary and the 2nd virtually ALWAYS to all of my PD patients whether they tolerate drugs and ESPECIALLY if they don't.

First, there is DEEP BRAIN STIMULATION which is the surgical electrode implant procedure. Are you aware of that? Would that be an option for your husband at all? I know how reticent many people are to do any type of surgery especially on elderly folk and especially if they have other medical problems. However, when nothing else seems to be working I always suggest that my patients seek out a REPUTABLE TEACHING CENTER where this procedure is done frequently just for a 2nd opinion.....not necessarily to schedule surgery....just to talk with the surgeon and the team to solicit their opinions on what kind of candidate your husband just might be given his current situation.

Perhaps, you've already gone this route and decided against the procedure. I don't know but if not I encourage you to consider it. I've patients whose lives were completely turned around by this surgery so I believe it has its place even though it is not a cure and even though we understand the effects will eventually wane. But for a few years things can be very good....

2nd thing which I don't know that you've heard about because as far as I know it was really initiated by a couple (non-medical) here in the XXXXXXX OH area and has spread to other parts of OH very rapidly. I don't know if it's out of state. It's called DELAY THE DISEASE. It is an entirely MEDICATION FREE EXERCISE program specifically designed for PD patients. It is NOT physical therapy. It does not require that you be able to be an athlete or near athlete. Patients are at all stages of the disease process and taught to do big gross motor movements through insightful training with therapists and coaches with specialized knowledge of how PD affects movements and speed of actions.

Please google: DELAY THE DISEASE as it pertains to PARKINSON'S DISEASE training classes in Ohio and see what you find because right now my computer is misbehaving and I can't pull up the link otherwise, I'd send it to you.

I am a HUGE ADVOCATE of EXERCISE TRAINING for PD patients. There are what are referred to as PARKINSON'S BOOT CAMPS as well which you very well may find through the larger institutions where you live (Mayo Clinic? Barrows Institute possibly) and these are modeled after the DELAY THE DISEASE program and they are also very good except they are short duration classes...usually 1 day in length and over. You need something long term.

Even if you can't do anything else, get him to a personal trainer at the local exercise facility who may be aware of styles of whole body training for improving GROSS MOTOR MOVEMENTS and making LARGE MUSCLE GROUP types of movements and you will be accomplishing at least part of this goal.

Lately, the research in PD and exercise therapy has exploded and is likely the only therapeutic intervention to date which has shown in well done experiments REGROWTH of muscle nerve connections that had previously deteriorated due to lack of use and prolonged muscle rigidity and disuse. In other words, there seems to be not only a halting to the loss of physiological connections between the brain and the muscles but there appears to be reversal of the process. Nobody understands exactly how this happens except that it works....but it takes some time and clearly takes motivation and effort on everyone's part.

But the rewards are terrific. The mind itslef perks up 5 notches just be increasing the activity levels even if the PD itself doesn't seem to match....people become more alert, more attentive, more interested in what's going on around them.....it's well worth the effort.

Bottom line: No matter what medication regimen you may decide on (if any at all at this point with your neurologist) please look for any way you can include this EXERCISE PROGRAM into your husband's daily regimen. And do not accept NO as an answer from him or other excuses for not going. The weather is beautiful in XXXXXXX ...wish we had half your nice days here in Cleveland! HAHA!

So, he should be able to get out virtually daily to some type of supervised and regimented program and you will see results in short order. It's really quite impressive what can be done without medication if the patient and support members for the patient dedicate themselves to some type of physical training program in addition to any other treatment option.

Please let me know if you have any other questions and I wish you well indeed.

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