Don't make light of your symptoms

So, I was throwing up Sunday morning around 1:00 am, which I figured was my monthly gag fest due to Parkinson's Medications.  I threw up a bit, but my chest was also hurting.  I didn't take much thought in this, because I was throwing up at the time, but the chest pain continued throughout the night.  When my wife woke up around 6:00 am, I told her of both the vomiting and chest pains and she insisted that we go see a doctor. This is a normal fight between us, as when I was first having PD symptoms, I didn't want to go and when she first had back problems, she didn't want to go and see her doctor.  Nevertheless, I knew better and insisted that we go to the nearby urgent care facility instead of an emergency room or calling 911.

We arrived at Urgent Care at 8:00 am when they opened and I was third in line.  Because I was complaining of chest pain, they took me right away (ahead of the second person) and took blood and ran an EKG.  I told my wife to take the kids to Sunday school and after I was done, I'd get a cab to take me home the 1-2 miles.  Needless to say, I didn't go home.  The EKG read normal but the blood test showed an elevated level for one of the heart enzymes, specifically my Troponin level measured 0.33 which was higher than the acceptable level of 0.10.  Because of this, the urgent care doctor called the local hospital and had me admitted and sent there via ambulance.  In the mean time, I had called my wife to let her know I was being hospitalized and where I would be.  She took the kids out of Sunday school and met me there as the ambulance arrived.

Unfortunately, do to flu season, the hospital would not let kids under 14 into the patient rooms.  Therefore, a friend sat with them as we began to talk to the cardiologist on call for Superbowl Sunday.  They observed me for a few hours and then retook my blood test after eight hours later.  Everyone expected my levels to drop or stay the same because both a subsequent EKG and a ECHO cardiogram the doctor did with a handheld device showed no sign of any problem with my heart.  However, the Troponin levels actually had a 10x increase to 3.9 from the previous level of 0.33.  We were all very confused.  They scheduled me for an angiogram the next day which is  the gold standard test to see if there are any problems and told me it would occur probably around 11:30 am.  The angiogram did not occur until about 4:30 pm Monday afternoon.  However, it showed a nearly 100% blockage in my circumflex artery which they immediately cleared and placed a stent in it's place to prevent further blockages.

So, yes, I did have a heart attack at age 42.  Luckily, it was the circumflex artery and not another.  Also, the EKG and ECHO tests showed no real damage occurred to my heart.  Therefore, once again we were very lucky.  I was given an additional 3 medications to use at least for the next year as well as baby aspirin.  I am also not going to be racing in the LA Marathon next month for Team-Parkinson, but will look into another race this summer.  I was released from the hospital today, but will see my cardiologist in the next couple of weeks to do a stress test and discuss with him my future options.  Also, with the new medications (particularly the aspirin and additional blood thinner) I probably will not have an opportunity to discuss making my Deep Brain Stimulator bi-lateral.

Take care, and I hope if you get anything out of my experience, don't take new symptoms or feelings or pain lightly.  If your gut tells you there seems to be something wrong, go with it, because there just may be something wrong.

Pledge to get Active

And now for something, somewhat different....

I mentioned in my last post, my wife wants me to sign up for a swim race/event.  After the post and the positive response I got from a number of people, I decided that I thought the idea of doing a race is a great one.  However, the more I thought about it, the more I thought that this would also be a great way to challenge others.  So, I'm putting my legs and arms where my mouth is and challenging everyone in the Parkinson's community to sign up for a race.

I don't care if it's a 5K, a marathon, a bicycle ride, a long swim or something completely different like a dance marathon.  The only condition, is that it has to be a distance/length/time that you have either never done before and/or that you have to keep up your training level to be able to finish.  If you've never done a 5k, sign up for one.  If you feel you cannot run one, walk one.  It doesn't have to be a Parkinson's related race and you don't have to raise money for Parkinson's as part of your training.  This is something for you and your health, because everything I've seen is that the best thing you can do for yourself in order to slow the progression is get active.

I'm not even swimming a mile yet, so I have not yet decided on whether to swim the full 2.4 mile race or just the 1.2 mile race.  However, I am pledging that I will be swimming at the Oceanside Tiki swim in September of 2013.  Currently, the website does not have next year's registration and/or event information for next year.

Nevertheless, considering we are coming up on a New Year, this is the perfect opportunity to make a New Year's resolution to get active.  Do it and I'm sure you will feel better.  Active means getting up and moving.  Just pledge to do something more and something measurable (can you tell I'm an engineer).

Leave a comment if you plan to sign up for something or have already pledged to do an activity.  Remember, this is in your own best interest.  So be selfish and get active.

Swimming, my new/old exercise

I'm hesitant to even write this, because every time I start writing about exercising, I seem to soon find some excuse to stop.  However, I have started swimming a few times in the week and unlike running, I'm actually enjoying it.  My wife love's running, I on the other hand, abhor it.  I feel slow and weak and especially in the morning when I was doing it this summer, I just felt uncoordinated.  I have never really enjoyed running, but with Parkinson's, I actually am moving toward dislike and possibly hatred.

However, swimming in the morning when I've been getting up around 5:00 am and am in the pool at my gym by 5:30 or earlier is amazing.  There are a couple of reasons for this.

1. Peace and tranquility - If you have never swum in a pool in the morning when it is still dark outside and the stars are out and you can only hear the strokes and kicks of the other people in the pool, you have never felt a more relaxing workout environment.  I will admit helps that I live in San Diego and I can swim outside year-round.
2. The feeling of weightlessness - As someone who struggles in the morning to just walk to the bathroom without shuffling, when I get in the pool, even if my meds haven't fully taken effect, I don't feel the PD. It is freeing and my body just feels easier to manipulate. 
3. I am actually not a bad swimmer.  I am definitely not in shape, but one of the sports I did well at as a kid was swimming.  The fact that my stroke form is pretty good and when I start a swim, I don't feel slow, helps me enjoy it more.  I'll admit it, one of the reasons I don't like running is because I'm slow.  I've always been a slow runner and I don't see that changing anytime soon; but, I am not a slow swimmer and in the past week, I've already seen progress.

Because of all this, I'm hoping it sticks.  My wife is already on me to sign up for a race that she'll be doing in the fall (a 2.4 mile swim), but she uses races to motivate her.  She paid the money and is damn well going to finish it.  That is not my motivator.  I'm actually still searching for it (other than the obvious family, health, slowing of progression, etc).  However, I'm hoping these enjoyable parts of swimming will point me to my motivation faster or will in themselves be it.

What motivates you and what are you doing to get moving?

Week 7, Day 2 Couch to 5K

Did it yesterday and forgot to post.  Enjoy the Olympics, once NBC decides to start showing stuff.  Heaven forbid they use current technology and live stream different sports (BBC live streaming the opening ceremonies and have 24 separate web channels).

Week 7, Day 1 - Couch to 5K

Ran the full 27 minutes straight this time.  A little slower than last weeks 25 minute run, but I probably ran for the same distance, just slower.  It was a good run and I didn't even listen to the podcast.  Just put on my watch and headed outside.  During these past few weeks, I've come to appreciate my daughter waking up early (usually between 5:30 and 6:30) since I do not need an alarm clock to get up and I figure I might as well go out for a run if I'm up this early.

As for future endeavors...Has anyone with PD done one of the beach body exercise programs (P90X, Insanity, ....)  I am wondering because core strength, balance and agility are all important factors in maintaining your well being, especially with Parkinsons, and it seems some of these workout programs focus on those aspects (especially Insanity, from what I've seen and read online).  My worry is that the workouts are too intense and will get my tremor going at 100 mph and I won't be able to recover and go on with the rest of my day.

Week 6 Day 3, Couch to 5K

Well, it is definitely getting harder.  This was the first run in the entire series that I actually was not able to run the entire way.  It was a 25 minute run and I had to stop at the 23 and a half minute mark.  I am still happy with how I did (I ran about 2.25 miles during that time) and will continue to train.  Also, it didn't help that I did not use my inhaler before this run, like I typically do.

This just showed me how hard I've been working.  It would have been inconceivable to run 20 minutes straight 6 weeks ago, so missing it by a little this week was not that big of a deal.  Next week, I increase and am supposed to run straight for 27 minutes.  I'll remember to use my inhaler and I should hopefully do well.

Week 6, Day 2 - Couch to 5K

Actually restarted week 6 this week, as I only ran once last week.  Day 1 sucked, but today's day 2 run was really good at the end.  The run consisted of a 5 minute warm-up, two 10 minute runs with a 3 minute walk break in between and a 5 minute cool-down.  I have not been feeling the runs very well these past few weeks; however, today with about 5 minutes left in the second 10 minutes felt awesome.  My meds kicked in and I felt my stride not only lengthen but increase in pace.  So, my last five minutes of running were also quickest five minutes of the entire run, although I don't have a Garmin and hate running with my phone, so I don't know by how much.

From now on, the runs are just increasing in length of time, but are constant runs.  I'll have to see how that goes and whether I want to just switch to music or other podcasts or books or continue using the NHS Couch to 5K podcast until I'm done.  I am also now trying to decide whether I should keep at the 5K distance for a bit, try a 10K training program, or a half marathon training program.  Thoughts and suggestions are always appreciated.

Day 1 Week 6 Couch to 5K

I actually ran this two days ago.  It definitely was not a good run in terms of exercise or speed or distance.  However, this was a good run for what one reason.  I actually did it, and kept on until the end.   The actual run is not the hardest one I've done thus far.  It was a 5 minute walk, 5 minute run, 3 minute walk, 8 minute run, 3 minute walk, 5 minute run and finally a 5 minute walk.  The last run of week five was a 20 minute run, no walking breaks, so you'd figure if I got through last week very well, you'd think I could kick this run's butt.  However, it would not be that way.

I could tell from the beginning that I was not going to have a stellar day.  It's weird, but I feel I now have a sense if my meds will be working well throughout the day or not, early in the morning after I wake up.  This was definitely a bad med day.  Nevertheless, I went on my run.  I dragged my foot a lot, listening to the sound and feeling the ground at both feet as I lumbered down the sidewalk.  I knew it was not going to be my best run in the first 5 minutes, because what normally takes me 4 minutes to run (the first two blocks outside my neighborhood), took the full 5 minutes or about an extra 25%.

At some point, I can just imagine the old me saying "F it", I'm walking home and I'll try again tomorrow.  However, this time I knew while slow, I could finish the runs and it was better to get the run in then get a good run in.  I don't know if that extends into more competitive running, but I knew getting the miles in was key to me succeeding and getting over my bad habits.  I'm still not perfect, but I'm getting better, and the wife's nagging (I gave her permission) is also helping.  I need to exercise regularly, even if I'm not feeling it.  For the most part, after I exercise, I feel better both physically and mentally but there will be days that I do not feel it, my meds are not kicking in and there is nothing I can do about that for the time being, those are the times I have to suck it up.

I need to remind myself of this so I can make the exercise a habit I want instead of a habit I need.  Especially on days like today where, I didn't get up to go run.

Day 1 Week 5, Couch to 5K

All the runs are different this week, but I'm not going to look them up as I want to be surprised.  This morning's run was 3 runs of 5 minutes, with 3 minute walking breaks between the runs.  I felt very good and maintained my running pace through out each of the 3 runs.  It's amazing how quickly and easily this program is working.

Day 3 Week 4, Couch to 5K

Quick update.  I finished the week pretty strong.  I definitely am feeling the longer runs, but am able to complete all of the run portions so far.  We'll see how it goes over the next five weeks.  Next week should be interesting because each of the podcasts for the different runs for next week are different.

I will say that the music this week was definitely not as good as previous weeks.  The up tempo stuff for the run portions seemed a bit boring.  I like to have a loud, heavy beat to run to as it just makes the run seem easier.  Speaking of loud, heavy beats:

Day 2 Week 4, Couch to 5K

Actually got the podcast to work, although my headphone remote is still having issues.  Nevertheless, felt exceptionally good in terms of my gait at the end of the run for the first time since early week 3 runs.  This week had me running for 16 minutes out of 21.5 minutes.

The system is definitely working as I don't believe four weeks ago, I could have run for these lengths of times, but I was actually feeling good at the end of this run, even though the last five minutes was pretty much uphill the entire way.

Day 1 Week 4, Couch to 5K

I mentioned in my previous post that I was now even more motivated to get in shape and exercise.  I am currently doing the NHS Couch to 5K program and exercises I got for core strength and balance/agility from my PT.  However, if anyone wants to post other ideas for activities, please do.

This workout was tough because once again I couldn't get my iPod to work correctly (the head phone remote was not working correctly).  I'll have to check it before I go on my next run.  Nevertheless, I think I hacked the run pretty well, considering I haven't gone out in a week.

Last week was extremely busy and I barely worked out (did my PT exercises), not that it's an excuse.  Besides the YOPC conference, I also went to the Van Halen concert in Anaheim on Tuesday, June 12.  It was a great show and here is Eddie Van Halen's guitar solo (all eight minutes).

Young Onset Parkinson's Conference recap

On Friday, June 15 and Saturday, June 16, I went to the Young Onset Parkinson's Conference in Irvine, CA.  I have actually never been to a conference related to Parkinson's and have not met personally with any Young Onset patients.  The main themes I got from the conference were exercise, eating healthy and taking control of your own care.

I arrived at 3:00 pm in Irvine after driving up from San Diego.  I registered and sat down at an empty table in back by myself.  All of a sudden another gentleman sat down next to me and introduced himself as John Ball.  I was shocked, excited and inspired as I had read John Ball's book, Living Well, Running Hard: Lessons Learned from Living with Parkinson's, a few years ago.  I immediately told him I knew who he was, read his book, and regretted I did not have it with me for him to sign.  If you do not know who John Ball is, he was diagnosed with Young Onset Parkinson's at age 39 after dealing with symptoms for ten years previous to that.  Since he turned 51, he has run upwards of 29 marathons and one ultra-marathon.  He is now in his upper 60s and still runs and this past year, his foundation Team-Parkinson, raised over $175k at the LA marathon.

Needless to say, I had not even heard the first speaker and was already psyched and enjoying the conference.  I found the speeches for the most part interesting, but what I really appreciated most was talking with other people who were going through similar issues as me.  I met many people who were in there 40s or who had been symptomatic since their 30s and 40s.  We discussed family, medication strategies, diet and exercise.  It was amazing to hear how many people were working out four to six times per week.  Also, I found people who had seen the benefits of adjusting their diets and the effect on their medication effectiveness.

People were from all walks of life.  Some were still working and had young children like myself while others were retired or working in new careers that had opened up to them as a result of their diagnosis and life situation.  However, one thing was very clear, those who were exercising, watching their diet and managing their disease the best in terms of understanding their med schedule and how everything effected it seemed to be doing the best.  You could tell they had better attitudes and had not let their disease take over their lives.  Instead, they were managing their disease and living their lives to the fullest.

I will definitely be gong to more of these conferences and will start attending the Young Onset support group in San Diego as that was another strategy that I saw many people using.  There really is nothing like talking to other people who get what you and your family is dealing with.


I'll leave you with some interesting notes and sayings I took from the other talks:

• With respect to exercising: What fits your busy schedule better, exercising one hour a day or being dead 24 hours a day?
• Mediterranean diet may help prevent Parkinson's and reduce symptoms.
• Guided imagery reduced tremor significantly.  Stress increases tremor.
• Important factors in Exercise - Intensity, Specificity, Difficulty and Complexity
• Keep yourself learning
• High intensity exercise with correct form showed significant improvement in gait 
• What exercises are better:  Skill base vs aerobic
• Dr Petzinger believes more important to do skill based training
• Any practice where learning is involved is important
• When shuffling stop and step off with less freezing leg
• New therapies on the horizon:
• Categories: 
• Disease modification - no meaningful treatments yet, but a bunch on horizon
• Symptoms - dopa responsive and non-motor based
• Drugs:
• Isradipine - protects neurons in mouse models, blocks l-type calcium channels, yet dopamine cells are not the only important ones.  
• People who take the drug as anti-hypertension drug lower risk at getting PD unlike other anti-hypertension drugs.  
• Give isradipine to fish it chews up alpha-synnuclein
• 60 patients and 60 controls, results are out next week so watch for it.
• Urate and PD, high levels (folks with gout) have lower risk of PD.   People with higher irate levels showed slower progression of the disease.  Fox foundation doing study with trial that will be done in 6 months.
• Other drugs include:
• Disrupting protein aggregation:  inhibition of alpha-synnuclein
• Pump drugs:
• Duodopa
• Apomorphine
• Gene therapy:
• GABA
• Neuterin
• Enrollment for clinical trials is major issue

Day 3 Week 3, Couch to 5K

I actually ran the podcast twice because I went on a longer route, so I just let it go and ran the whole time.  Ended up doing a 5K, only it took me nearly both podcasts or about 40-45 minutes.  Hopefully, I'll get it down to around 30 minutes by the end of the eight week period.

At least the music is somewhat interesting, at least some of it.  Although, I'd say the music while running is definitely not as good as the music you listen to while walking.  I tried to find a list of some the songs, but couldn't find a play list.

Day 2 Week 3, Couch to 5K

I finished and felt pretty good today.  I'm also pretty busy today, so I'll just leave you with this.

Day 1 Week 3, Couch to 5K

Second run in a row that I wasn't feeling it, at least until the last cool down when my arm swing came back after my meds started to kick in.  I did run the whole series that I was supposed to and could tell that I've increased my distance running since I am getting towards the house sooner and have a shorter cool down before I reach my house.  I am not focusing on time at all right now, but my goal is to run a 5k in less than 30 minutes.  I've never done an official race where I've done that and think it would be pretty good to get a PR like that six years after being diagnosed.

One thing I believe those without PD would probably find pretty odd is how I, and possibly others with PD, regard my symptoms as indicators of my current medication state (on/off periods).  It's difficult to describe the feeling I get when I realize my meds have just kicked in.  Whenever the realization occurs, I get a smile on my face and I feel almost euphoric.  A calm settles over me; yet, I feel so much stronger.  When it happened at work the other day, I found myself speeding down a hall and colleague commenting on how fast I was walking.  I replied that when I can walk quickly, I take advantage of it.

The idea of walking fast, somehow reminded me of the song Fast Cars by Tracy Chapman, which reminded me of one of my favorite bands of the early 90s Living Colour who did a cover of another Tracy Chapman song.  This lead to a google search which revealed this, from one of the great TV shows of the 90s.

Day 2 Week 2, Couch to 5K

This was my worst run so far.  Interestingly, when my meds have not kicked in, I have noticed that I run much better than I walk.  In fact, while at work, if I'm feeling a bit off, I might go run or jog down the hall to get myself going and my arms swinging.  Unfortunately, this was not the case today.

I am getting up before the family to do these runs (about 5:45 am).  I take my meds, squeeze a couple shots out of my new inhaler, turn on the iPod and go.  Up until today, when I start running after the 5 minute "brisk" walk, I have felt great.  Today, that feeling never kicked in.  In fact, I really did not feel my meds kick in until after my shower and as I was leaving to drop my son off at school.

Nevertheless, I did the entire run and am glad I did.  I know I'll have good days and bad days, you just have to roll with it.  And to those who don't get what I mean when a Parkinson's patient is discussing on/off periods of medications:

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,

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.

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.