Wednesday, May 30, 2012

Day 1, Week 2 Couch to 5K

Short update:  Did the run without an iPod because I forgot to charge it. DOH!  Counted in my head to try and get the correct times, but know I was off. I still got up early and did the run though, so I'm happy.

In honor of my dead battery iPod,

Tuesday, May 29, 2012

I knew Parkinson's was a pain in the ass, but....

In a study  at the Rush University Medical Center in Chicago that was published in the Journal Movement Disorders,
researchers reported they examined tissue samples from three patients taken during colonoscopies two to five years before the patients developed Parkinson's disease symptoms. All the patients had the characteristic aggregates of alpha-synuclein in their gut.
This study came after a previous study where they found that nine PD patients had clumps of alpha-synuclein in the nerve tissues in their guts, while 23 healthy patients and 23 Crohn's or Colitis patients did not.  What this means, is there may now be a definitive test for Parkinson's Disease and one which could catch the disease even before symptoms begin to appear.  While this probably won't help many people with Young Onset Parkinson's Disease (YOPD) because you typically don't have your first colonoscopy until your 45-50, it definitely could help elderly patients get on neuro-protective drugs that are currently in development or just released.

Considering all the tests I went through to rule out everything else before my doctor officially "diagnosed" me with Parkinson's and the number of YOPD patients that go years before they can convince a doctor it's not stress or in their head (no pun intended), a colonoscopy would probably be a welcomed test if it could give a definitive diagnosis.  And yes, I have had a colonoscopy (the prep is worse than the actual test).

Some other benefits of these results is that it gives a new avenue to study in how Parkinson's develops, because researchers can now look at patients before they actually have symptoms and possibly measure if there is some gradual increase that will move the disease and symptoms from the gut to the brain.  Also, with a definitive test, a common patient sub-group can be used to test new treatments without having to guess if the person is a definitive patient.

Friday, May 25, 2012

Limbaugh, Michael J Fox and Parkinson's Disease

Yes, I am pretty liberal.  Nevertheless, even if your Conservative, if you have Parkinson's Disease, there is no reason you should listen Limbaugh.  In fact, I'd say that you are doing yourself a disservice if you do.  Once again Limbaugh has gotten all full of himself trying to make himself into the victim.

If you don't remember Limbaugh mimicking Michael J Fox's Levodopa-induced dyskinesia, here it is:

Now, Rush is saying he was right to attack Fox, ignoring the fact that he had no clue what he was talking about and that his medications were making him move that way.  Rush rushes to the conclusion that since the Michael J. Fox Foundation (MJFF) sees other avenues as currently more promising for a cure, stem cells are now off the table (especially embryonic).  Since Fox said actually the opposite of what Rush implied, once again he lies and distorts.  Face it, if you are getting your facts about Parkinson's Disease and Parkinson's related research from Rush Limbaugh, you are misinformed.

I've actually met with people from the MJFF, and they repeated the same line to me that Fox repeated to Diane Sawyer.  One of the most interesting areas they are looking at is currently gene manipulation with viruses.  As for Fox's symptoms, he has mentioned recently that he is taking more acting jobs because with advances in medications, he is now better able to control his dyskinesia, most likely due to the research his foundation has been funding.

Day 2, Week 1 Couch-to-5K

Good things:  I got my podcast working and used my inhaler before my run.
Bad things: It's raining in San Diego.

I still did the run despite the rain.  If you know anything about the weather in San Diego, it's not supposed to rain between May and October.  However, it's good because the family is supposed to go camping out in the Mountains this weekend and their is currently a fire near Julian.  Hopefully, the winds will stay low and the rain will help.  It's our first camping trip with the kids and we have been looking forward to this for a while.

The run was actually pretty easy despite the rain, so I might skip day 3 and get the weeks back on schedule and go directly to Day 1, Week 2 for my next workout.  Ended the running part of the podcast I'm using and switched to music during the cool down.  Nirvana's Smells Like Teen Spirit was the first song where I remember exactly where I was and what I was doing when I heard it for the first time.  I was actually at a friend's house in Buffalo (I was doing an engineering internship at GM) and I just stopped and was immediately hooked.  It basically changed my entire musical outlook and taste.

Wednesday, May 23, 2012

Day 1, Week 1 Couch to 5k

I figure a way to keep me honest about exercise will be to track it and publish it online.  That way, if I miss some workouts some folks might be kind enough to let me know I need to get back on the horse.

On that note, I'm starting the NHS couch-to-5K program.  This is a podcast that reminds the runner when to run and when to walk in order to build up to running for a full 5K.  I went out this morning and did my first run/walk session. Only two problems occurred, I forgot to use the inhaler I just got to help with my exercise induced asthma and the podcast download did not sync to my ipod.  Nevertheless, I was able to do a 1.7 mile loop walk/run and felt pretty good afterwards.

I was able to listen to the single best mash-up album ever.

Tuesday, May 22, 2012

Young Onset Parkinson's Conference

I signed up for the Young Onset Parkinson's Conference in Irvine on June 15 and 16.  This will be my first time interacting with other PD patients as I have not attended any support groups or other conferences in the past.  Also, while I have interacted with other folks online, one-on-one, it will be interesting to see a whole bunch of people all together.

Since I live in San Diego, attending was an easy choice to make and I thank goodness I have a very supportive wife who wants me to attend.  If you're attending, let me know via the comments section.

Wednesday, May 16, 2012

Changing my med schedule

I mentioned to my MDS (Movement Disorder Specialist, a subspecialty of Neurology that anyone with YOPD should actually try and see instead of just a straight Neuro) that I was seeing positive results from adjusting my diet.  She basically said it was interesting and moved on.  I guess there are so many factors that it's just one more for her to keep track of.

However, what was good about my visit, besides the free drugs (she's gotten me into drug studies that have effectively cut my Rx costs in half over the past 6 years), was her suggestion that I adjust my med schedule and begin taking some meds at night instead of the morning.   I started Monday night, and am definitely seeing a difference.  The medications I'm currently on are Azilect, Requip XL, and Sinemet.  The first two last upwards of 24 hours because they are time release (which in the case of Requip XL, has made it non-generic again and increased the cost to me by 17x, not that I'm complaining).  I now take 2 pills of Requip XL in the morning and 1 in the evening along with the Azilect in the evening.  I take the Sinemet throughout the day.

At night, I've noticed a\n obvious dramatic difference whereby my meds used to completely wear-off by about 8-9 pm and I'd be shaking or stumbling around the rest of the night.  Now, my meds stay active until close to bedtime, which is obviously a welcome relief to both my wife and I.  She likes it that I am now somewhat normal at the times she sees me as well as when I'm at work.  In the morning, I've also noticed that my meds seem to work quicker for some reason and I'm able to get to normal in about 30-45 minutes instead of 60-90 minutes.

BTW, I need to start writing more, just because in a way, it's cathartic.  However, I need to figure out what to write about first.

Monday, May 7, 2012

No Excuses!

Exercise has been shown to slow the progression of Parkinson's Disease.  So if you have PD, especially if you have Young Onset, get out there and do something.

On that note, if this doesn't inspire you to workout, then nothing will.