Getting some traffic

Evidently, telling the Michael J Fox Foundation that you have a blog is good for traffic and I've barely written anything in the past few months due to my new job keeping me busy.  So, if you'd like to see some of my more interesting posts....

• A job interview while having Parkinsons's Disease
• The women in my life
• Discussing my daughter's broken neck in: A Personal Rant and Learning to be Grateful
• My notes from a YOPD Conference in Orange County

Those aren't my only interesting posts, but they say a great deal about me and what my family and I are dealing with.  Please look around and let me know what interests you and what you'd like to hear more about.

An interview with Parkinson's Disease

No, this is not a post of me interviewing my disease.  This is about going on an interview for a new job while I have Parkinson's Disease.  I work at a large corporation and have been here for nearly 20 years.  That's a long time for anyone, but especially for someone in the tech industry.  However, I have stayed here for a number of reasons, including health care, schedule flexibility and the fact that my management chain believes people's families are important and have shown that in their actions towards me and my family, especially since my daughter was born.

I like working where I am but have felt stuck in a rut that I have not been able to get out.  It's not that I lack motivation (actually a symptom of PD I don't yet have), but I seem to have been (in my opinion) typecast in a role here at my company and am unable to get to more leading roles, because of that typecasting.  Therefore, this past December, I updated the resume and sent it out to a few companies in my area that had posted positions dealing with areas that I had experience and in which I was interested.  These positions were all senior engineering positions.

Within two weeks, one of those companies contacted me and after an initial interview over the phone, asked me to attend an onsite interview.  This is where the nerves could kick in.  I did not want to hide my Parkinson's; but, I also did not want to advertise it in the way a constant tremor or being off balance may cause.  Luckily, I have recently figured out a good med regimen that keeps my tremor and gait issues pretty much controlled as long as I get a good night's sleep and eat right (lower protein intake and reduce the junk food).

So, after making sure I got a good night's sleep and not overdoing anything for breakfast, I took my meds at the appropriate times and showed up for my interview on time (giving thanks for leaving an extra 20 minutes early because of all the traffic I hit).  The interviews went well, they seemed to like my resume and experience.  Also, I had barely a tremor and really had no gait issues for the 3 hours I was there.  I was relaxed and felt good.

The last interview was with the person that would be my manager if I got the position.  It was near the end of this interview that I told him that I wished to disclose that I had Parkinson's Disease.  The reason I did this was twofold.

1. If I got the job, I was going to be working with these people.  I wanted to be up front and honest because they would be the ones I would be interacting with everyday.  If I didn't disclose, when I got to work and started using a cane or shaking really badly, they'd be wondering what else was I hiding.
2. To be honest, if they had a problem with my PD, I wouldn't want to work there.  I worked for a company that has been very accommodating  I don't need the added stress of hiding my disease from my new employer added to the stress of learning a new job.

The manager looked at me, thanked me for being honest and asked point blank what did that mean in terms of my work.  I explained that my work wouldn't suffer (it hasn't at my current job), I just might type a little slower and use a cane at times.  He told me as long as my work was not affected, he didn't care (which is the answer I was hoping he'd give).  We ended the interview about 10 minutes later, and I was escorted to the lobby.  

A week and a half later, I was offered a position and will be starting a new job for the first time in two weeks.  I am excited, nervous and very happy with all that has happened.  But, I'm especially glad/hopeful that I found a company that will allow me to continue working with PD and support my family.  

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.

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.

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

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.

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.

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.

What I am doing here

Hi,

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.