DBS Progress Report

I've officially been off most of my PD meds for over a week now.  Last week, the nurse who does the programming of my system, increased the voltages in my left side (right brain) and I was able to walk normally, with no meds.  I'm still noticing some occasional tremor, like while I'm typing, but I have had no meds for over a week.  I will continue to play with my voltages and meds to see if I can improve my symptoms some more, but is already having a dramatic effect.

Some improvements besides reduction in meds:

1. Walking - This is probably one of the most dramatic improvements.  I am walking relatively normally and even run as well.
2. Sleeping - This actually ranks up with walking.  I have been sleeping 7-8 hours straight through for the first time in years.
3. Bathroom urgency - Related to the sleeping, I can hold my bladder better and can sleep through the night as well.
4. Speech - While occasionally slurred when I'm tired, I and others have notice a less staccato method of talking and thoughts float off my tongue more clearly.
5. Tremor and dexterity - little or no off time.
6. Dyskinesia - gone when I don't take meds.

To put it bluntly, my surgery is working even better than I hoped.  Here's to it continuing.

It's been a while, but I had brain surgery and it worked!

I had brain surgery again, just over two weeks ago.  I was released from the hospital the day after surgery and here's the shot my wife posted to Facebook, with the caption, "Who had brain surgery yesterday and was already released today? This guy!"

They turned my leads on the following week, and to say there is a difference between now and then would be understating the case by orders of magnitude.  I am so happy with how the new leads are working after just the first programming session.  My walking has improved, my tremor has reduced, and my med intake has dropped by over half.  Right after programming, I took an extended walk with friends to a bar in downtown San Francisco.  I was doing great, until my meds kicked in and my dyskinesia went crazy, that was when I realized, I would need to dramatically reduce my meds.  I am still figuring the med levels and times that work well for me; however, I am doing well and feeling better than ever.

Thanks for all the well wishes over the past two years since I began looking at having my first surgery.  I don't wish my experiences of a stroke, heart attack and finding the leads had moved to finding a new surgeon and having the new leads installed on anyone, but hope others can find solace in my experiences and know that there is good news, eventually.

Promising Drug Therapy for Parkinson's won't be Researched, yet

What if I told you there was a drug that could cause the Mean total score on the motor Unified Parkinson Disease Rating Scale (UPDRS) to improve significantly from 33.1 at baseline to 23.2 after usage and the analysis of specific motor symptoms revealed significant improvement after treatment in tremor, rigidity, and bradykinesia.

If you were a Parkinson's Patient, you might say, sign me up and if you were a doctor, where's my prescription pad.  However, if you're the US government, you'd be saying no, no, no.  Why? because while an initial study done in Israel showed these results, the title of the study was, "Cannabis (medical marijuana) treatment for motor and non-motor symptoms of Parkinson disease: an open-label observational study."  This research is thus nearly impossible to undertake in the US because, federal rules state that experiments can use marijuana only from a single, government-run farm in Mississippi. Researchers say the agency that oversees the farm, the National Institute on Drug Abuse, has long been hostile to proposals aimed at examining possible benefits of the drug.

In the last 10 years, the government had approved just one U.S. research center to conduct clinical trials involving marijuana use for medical purposes — a UC San Diego facility created by the California Legislature.  However, on Friday:

the Obama administration handed backers of medical marijuana a significant victory Friday, opening the way for a University of Arizona researcher to examine whether pot can help veterans cope with post-traumatic stress, a move that could lead to broader studies into potential benefits of the drug.

This is the start and while I don't believe that Marijuana will be the wonder drug some people think it is.  It will be scientific research that proves or disproves that theory, not some anti-drug politician who still believes that evolution is only a Theory.

How OptumRX legally screwed me out of $150

I take a number of drugs for Parkinson's.  One of those drugs is Requip XL (Ropinerole ER).  This drug is the same as the drug Requip (Ropinerole), except it has a time release capability which means the drug company that created it, could keep it from going generic, longer.  The advantage of taking the time release version is that you get a little bit of the drug over the whole day as opposed to large doses that taper off.  The good news is that the drug just went generic.  The bad news is that my prescription plan through UHC has not yet approved it for generic pricing.

Nevertheless, my pharmacy, OptumRX, in their infinite wisdom as a generic pharmacy sent me the generic version of the drug.  They also charged me the same rate as it would have cost if I they had sent me the brand name of the drug.  I called them and asked since I was paying brand name prices, I wanted the brand name drug.  They basically said, tough.  They sent it out and there was no indication on the prescription to fill as ordered instead of using a generic version of the drug.

Now understand this, I would prefer to have the generic version of the drug, but for generic prices.  The fact that I called them immediately upon receiving the medication and they did not call me back is indicative that they knew what they were doing.  I called back a few weeks later, and after discussing with a customer service representative and her supervisor, I asked to talk to the pharmacist who was in charge of making the decision.  I was told by the supervisor that the pharmacist would not speak to me and the decision was final.

The problem is, I have no recourse and the pharmacy knows this.  They are the only mail order prescription service that my health plan uses and they are on the whole much less expensive then going to the local drug store.  Nevertheless, I will probably be transferring this prescription to a local drug store, because then I will be able to see what I am receiving and quickly be able to determine whether the generic brand has been accepted by my health plan and the price will go down.

For reference, my plan offers Tier III drugs such as Requip XL for $170 for a three month supply, while a generic brand will cost $20.