Wednesday, June 27, 2012

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.

Sunday, June 24, 2012

Young Onset: One Disease, Many Life Styles & Choices

After attending the Young Onset Parkinson's Conference a week ago, I decided to try out the local Young Onset Support group.  What both of these meetings made me realize is that those with Young Onset Parkinson's Disease are a very wide ranging group.

The official designation for Young Onset is that symptoms start before you reach the age of 50.  However, that involves a lot of people. My symptoms started at 32.  There were people I met at the conference who were in there 20's when their symptoms started as well as folks who were in their late 40s.  At the support group, even though I was one of the few people who had symptoms for more than 5 years, I was the youngest person there by at least 5 years.  There were people who had symptoms for over 10 years, but nearly everyone was approaching 50 or already over it.

However, age is only one factor in our differences.  These differences include family status, work status, general level of health, medication effectiveness and availability, and attitude.  Also, many of these factors will change as the disease progresses.  For example, I am married with two young children, work full time, am relatively healthy (other than the Parkinsons), respond great to my medications and am generally positive about my future both in finding a cure and my ability to manage this disease.  All these are factors that affect both my life and my disease.  Since I work, I probably have more stress in my life.  However, I usually respond well to stress and so far I have not seen any major effect on my disease progression (as far as I know).  Also, when my meds are on, I can type normally and perform my job well.

Work status seemed to one of the big differences I've noticed between Young Onset people.  It was surprising to listen to how many people had retired, gone on disability or been fired from their positions because of their disease (many of these people were fired before their diagnosis, yet, their symptoms were causing changes in their job performance).  Also, while it seemed most people had kids who were fully grown or nearing college age, there were still a few of us with young kids (under 10) and even a few who were still deciding whether they wanted kids.

Not only do these differences place many of us in different points in our lives, but they make our treatment plans and the way we deal with Parkinson's unique.  The fact that someone has retired or has grown kids makes there ability to workout and focus on their health easier.  Yet, I was more likely to see those who were working full or part-time more active and more focused on their health.  Partially, this is out of necessity, because if you are the main provider in your family, you are going to damn well make sure you are there to provide.  But it also seemed that those who take control of their disease were in general doing better.

It was not so much a matter of age or time since diagnosis either.  I don't want to sound callous or harsh, but there were people I met in their 40s who seemed to have given up and were complaining about every issue that affected them, while I also met folks in their 60s who were exercising every day after living with this disease more than 30 years.  I don't want to discount that PD treats everyone differently.  We have a friend who has a particularly fast progression.  However, I can say, with my disease, to use the old cliche,
I have Parkinson's, it doesn't have me.

Friday, June 22, 2012

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:

Thursday, June 21, 2012

Reading other YOPD blogs

My wife and I just read this great post from @YumaBev discussing how she has retrained herself to maintain her hand writing and I realized I need to start reading the blogs of other people with YOPD.  Based upon my twitter list, I've found the ones listed on the right.  However, if you have one that I have not listed, please leave it in the comments and I'll add it.

I've determined the more I read and learn, the better off I am at finding strategies to cope and improve my well being.  I hope this list helps others as well.

Wednesday, June 20, 2012

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.

Monday, June 18, 2012

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

Saturday, June 9, 2012

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.

Thursday, June 7, 2012

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.

Wednesday, June 6, 2012

It is not as amusing as you think it is

Recently at work, I was walking towards the cafeteria before lunch.  I had just taken my meds and was not fully on, so I was more shuffling rather than walking.  Where I was walking was carpeted and a person who did not know me commented, "don't touch me, I don't want to get shocked."  I looked at him confused and he asked if I was trying to build up static electricity on the carpet (I work with a lot of engineers).  I laughed it off at the time, but in the back of my head wanted to say, "No, I'm shuffling my feet because I have Parkinson's, asshole."  Since it was totally inappropriate to say that at work, and I was not in the mood to make someone feel bad, I let it go and just said, "No, this is how I walk sometimes," and moved on.

However, it got me thinking/wondering what the appropriate response should have been.  Should I have educated him, nicely and explained that what he was joking about was not under my control or was I right to just let it go or should I have made him feel small and insensitive in a "work friendly" way.  Granted, my employer knows full well that I have PD and they are very supportive, so I felt safe talking about it, while others might not in that situation.

This is a big issue in my family, for not just me, but my daughter as well.  I have a young daughter that has many medical issues.  Among them she is deaf/hard of hearing and has a balance impairment.  She did not walk until the age of three and a half and will always have balance issues that she has to overcome.  She is also a motivated girl who works harder than anyone I know to improve and thrive.  Every teacher and therapist she has ever had, has fallen in love with her and is amazed at her progress, motivation and drive.  Yet, I know there will be comments in the future on the play ground and it frightens me.  I don't want anyone to hurt my little girl, but I also don't want to be so overprotective that she cannot take care of herself.  Currently, she is young enough that her classmates haven't yet separated into cliques and/or tease each other but when they do, any parent of a child that takes issue with my kid better be ready to deal with me and my wife.  And if the parent is hesitant about dealing with their child, our response won't be work appropriate.

We don't advertise my diagnosis or feel sorry for ourselves. Our friends know as well as my colleagues at work.  Also, if someone asks what is wrong, I'll tell them the truth about my diagnosis.  However, it is never used as an excuse for me or my family.  My kids are not suffering because I have this diagnosis and my daughter is thriving.  I still wrestle with them, beat them at video games (not as much as they get older), am active with them outdoors, etc.  So, if you're feeling sorry for my kids or my family, don't.  We have a very good life.

Also, don't take this as we cannot find the humor in our situation as well.  When we found out about my daughter's hearing loss, we began learning sign language.  We don't use it much, but we know more than a typical family using baby signs would.  One day when I was signing to my daughter while my tremor was pretty active, my wife turned to me and asked did that mean I was stuttering?  However, just because we can joke about our situation, doesn't give everyone the right to make comments or snide remarks.

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.

Friday, June 1, 2012

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: