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.

Parkinson's Vaccine: What does it mean for those with PD and those who will eventually get PD

The Parkinson's vaccine that has been developed in Austria by biotech company AFFiRis AG has recently gotten a lot of news.  They announced positive results of a phase one safety study for a vaccine that could slow or even stop the progression of Parkinson's.

While this is great news, the unfortunate thing is also stated in that first paragraph as well, where it states the vaccine may only:

slow or even stop the progression of Parkinson's

 I actually talked to my neurologist about the vaccine and while it will aid new patients who are diagnosed with Parkinson's and may also point to an indicator that can be tested before symptoms begin to appear, the protein alpha-synuclein, this will not reverse the effects of Parkinson's disease, because those cells are already dead and clearing the alpha-synuclein that had a part in their death will not bring them back.

Therefore, for the millions with Parkinson's Disease, we still require a methodology for replacing the dopamine those cells used to produce, via medication/DBS, or the actual cells themselves, via stem cells, gene manipulation or some method someone has not yet thought up.  I don't want to be a downer, this vaccine is great news if it really works; however, for those of us already living with the disease have even further to go.

Also, remember, I am just a patient so take what I say with a grain of salt and discuss it with your doctor.

It might not be Parkinson's causing all your symptoms

I've expressed my frustrations with my DBS not really having much affect on my gait issues.  I'm still taking my entire regimen of medications and while my tremor disappeared, I've not seen much gain in any other aspects of my symptoms.  This lead me to look at other possibilities, and low and behold, I might have found one.

About 5-6 years ago, my General Physician, found that my Thyroid function was low.  He put me on a steady regimen of Levothyroxine and checked my Thyroid levels once a year when I went in for annual physicals and basically let it go at that.  About two years ago I stopped taking the Levothyroxine.  I can't really say why, just I never really felt different taking it or not taking it, or so I thought.

I went to my GP again last week and he had my blood work done and my thyroid TH level had skyrocketed.  I had done some research before the appointment and asked both him and my neurologist if thyroid function could affect gait.  Both quickly said, "Yes!"   So, there you go, my physician re-prescribed me the Levothyroxine and I am now taking it.

The problem now is that the dosage I was prescribed was what I was taking 2 years ago.  I didn't titrate up and I am actually a mess the past two days.  However, my doctor prescribed me a lower dose today to titrate up to my old dosage and told me to call his office next week.  Why am I confident that this might be a missing link?  Ever since I started the Levothyroxine, my tremor has reappeared right after I take a Sinemet and my walking gets even worse for about 20-40 minutes.  While most folks would say that's bad, to me it says, the Levothyroxine is affecting either the function of the Sinemet or what I thought were PD symptoms but are actually Thyroid ones.  So, I'm going to switch to the titrating dosage and have my programmer readjust my program more for tremor than the gait that she was working on with me (according to her, this usually involves raising the frequency of the electrical stimulation).

My programming appointment is Monday and hopefully I'll be able to function a bit better by then, especially because I've only run twice this week and I have to run twice this weekend to keep up my training schedule.  I'll report back over the next few weeks how this new med regimen is working.

Juice Fasting with Parkinson's Disease

Ok, that was hard and weird.  I did not make it the full three days. I did two days, and ate a couple of Avocados and Bananas during the fast as well, so not sure how much of a "fast" it actually was.  I'm a big guy (about 210 lbs) so, I get hungry.  Also, as my wife noted, I'm a snacker, so it took a lot to just get through those two days.

Nevertheless, I'm happy I did it because of what I noticed.  During the fast, especially the second day and the third day during which I actually did eat a bit, I noticed my meds were working really well and I seemed to be staying on longer.  In fact, yesterday (day 3), I extended my meds (Sinemet) so long, that I actually took only 8 pills instead of 9 during the day, and the last two were taken at least two hours after I would normally take my last dosage of the day.

So, the question is, what was this doing to my system that I could extend my meds for much longer periods of time.  A couple things come to mind.

1. Sinemet does not work well with protein, and the juice fast pretty much eliminates most proteins from your diet, at least proteins from animal sources.  The fact I was eating a lot less protein may have contributed to the effectiveness of my meds.  One caveat is that my wife is vegetarian, and we rarely eat meat in the house,. so unless it's dairy or soy, I don't get a lot of protein on a daily basis anyways.
2. Ridding my body of toxic food helped me reset some of my synapses and effectively improved my reactions to my medications.  This one is a who knows?
3. Similar to number 2, but coming from the opposite end, eating a lot of fruits and vegetables in the form of juice helps your body absorb and use the medications more effectively.  I mean the amount of fruits and vegetables I ate in those two days was huge, compared any other day, hell week, over the past couple of years.

While, I have no evidence other then basically how I felt and what my reactions were, it gives me somewhere /something to look into further.  I plan no trying to just skip a few meals a week next week during working hours and drink juices instead.  I want to see if that will have a similar effect on my med schedule and general overall well being.  Other than being hungry and missing the act of eating, I'd say it was pretty successful and I look forward to some more self-experimentation.

One note:  I am not a doctor, I am not recommending this to anyone.  If you do begin a fast, note that you probably should see your doctor before hand.  Nevertheless, if you do try it, please let me know how it went and what if any observations you make.

There's something in the food

I am totally convinced that there is an element of my symptoms that is exacerbated by what I eat. I just don't know what it is that is triggering it. I mentioned in my first post, that I believe high levels of protein make me feel worse. However, even when I don't have much protein during the day (it helps being married to a vegetarian), I still get periods where I'm just not doing well.

What is not doing well? I feel I'm not doing well if I don't see profound change for the good in my gait and tremor forty five minutes to an hour after I've taken my medication (all of them in the morning after waking up, and one Sinemet later in the day.

Some of the things I've tried over the past few years included giving up caffeine altogether, giving up diet soda, giving up all soda, etc. The newest thing I just started trying is to give up all sugary snacks, treats, drinks and condiments. I started this morning and have been doing well so far (yet, it's not even noon yet). I'll probably try this for a few days and then report back. However, this will be hard given my propensity for sweets and it doesn't help that the wife makes cookies with the kids every week as an activity.

As an aside, this whole giving up sugar idea reminded me of this.

Med schedule

I have been taking Sinemet for about two years now. I started off with three pills a day and upped it to six last year. The good thing is it's a generic drug (I take other drugs that are not) so it's relatively cheap. One thing I've learned is that PD patients are very experimental with their meds. I have been prescribed six pills for nearly a year now, but when I take them has changed dramatically over the year.

I started off taking the pills haphazardly. Regularly, taking my morning dose with all my other meds. But I wouldn't take my next dose until I felt I needed it (definitely the wrong way to go). Because of this I started taking two pills at a time. The dose lasted longer and when I was on, I was feeling really good. I was not changing my overall dosage but I was taking more at once. A friend who is a neurologist explained it to me as I'm getting a higher high, but it also means I am getting a bigger drop off.

Well this bigger drop off started hitting me like a brick wall a couple weeks ago. I've been tempted to request my MDS (movement disorder specialist, a subspecialty of neurology) up my dosage. However, before I did that I wanted to see how reducing down to one pill at a time and keeping a strict schedule would work. I'm happy to say, at the moment, it looks like this was the better option. I am going to have to figure out a better way of reminding myself to take my pills on time. Nevertheless, the past couple of days, I've felt a lot better during the off times, it's not as dramatic a change or as hard to deal with, and my on times have seemed to come back up to a more reasonable length that allows me to work efficiently at my job.