Wednesday, April 25, 2012

I think it's working

The diet change seems to be helping. I don't know if it's psychosomatic, or actually real. However, I have noticed that since I stopped snacking on sugary treats during the day and reduced my protein intake, my symptoms are not as pronounced as they were. I seem to have less off time, and my meds seem to kick in a faster than they did.

It didn't help that my mom came into town toting a brisket for the family (since the wife is vegetarian and does most of the cooking, my kids and I love when Grandma brings a brisket over). However, she will probably not continue bringing them cross-country. I told her about my food experiment and she basically said she wasn't bringing it anymore. I still had an occasional sweet, usually at night before bed and when I wasn't concerned about my gait or tremor as much because everyone was asleep. However, I cut out all the juice I was drinking and non-diet soda. I had previously tried not drinking diet-soda and would have juice or Sprite instead, but that did not seem to have any impact. It's only been a week, but it's a rare positive in a recent sea of negatives, so I'm hopeful.

Thanks to those who tweeted in response to my previous post. It's good to hear from people both in comments (I have none so far) and via twitter.

 Warning about twitter - I am very liberal, even more so than when I was in my 20s and 30s. Life usually pushes you one way or the other. So, if that doesn't float your boat, that's ok. Ignore those posts.

Wednesday, April 18, 2012

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.

Wednesday, April 11, 2012

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.

Tuesday, April 10, 2012

What I am doing here


I was officially diagnosed with Parkinson's Disease (PD) in 2006 at age 34. I had symptoms for 2 years previous to that, but it took a while to get to the doctor, go through all the tests to rule everything else out and get the official diagnosis.

For the past six years, I've been doing pretty well. However, this year, my symptoms have really started to turn and when my meds are off, they are really off. I am starting this blog in the hopes of better understanding my symptoms, how my meds are working (I'm going to track how I feel either daily or multiple times a day) and what may be some factors in how I feel.

Some things I've noticed is exercise and the exertion level I do it at affect me for at least the rest of the day. Also, I noticed that excessive protein intake also affects me badly (I was eating protein bars for a couple mornings in a row and I was doing lousy those days).

I work full time as a software engineer, am married and have two kids. However, I will not be giving a lot of personal information because I work and frankly, while my symptoms are obvious and my employer knows, if I have to change jobs, I don't want this blog to be a factor in my hiring.