The Women in My Home

If you didn't know, I am not the person in my family with the most health issues.  That distinction belongs to my daughter.  My daughter was born the same year I was officially diagnosed (my son was born the year my symptoms began).  When she was born, we were expecting a healthy baby girl (we found out she was a girl beforehand) and I was not taking any medications at that time.  Needless to say, the moment she was born, we knew we were in for it.  However, we actually had no clue.

My daughter was born with a cleft lip.  While immediately noticeable, it ended up being one of the smallest issues we've dealt with over the past six years.  She had heart surgery at 10 days old to fix a PDA, had surgery again at one month old to get a mic-key feeding tube and fundoplication, had two surgeries at 5-6 months old to redo the fundoplication and get a tracheotomy inserted due to a laryngomalacia and tracheomalacia, and surgery at 8 months old to fix her cleft lip.  The trach and feeding tubes were removed when she was four years old.  She is also deaf in her left ear, hard of hearing in her right ear (aided to normal with a hearing aid), has coloboma's in both eyes and is missing her semi-circular canals in both ears.  Besides this, she broke her neck last month, again due to a congenital issue.  Needless to say, my daughter deals with a LOT.   Yet, she is in a mainstream Kindergarten and is doing work appropriate to her grade level.

My wife is a stay at home mom, who has not only taken care of our daughter, but has ensured that she has thrived.  My daughter is a very special girl with an amazing attitude.  If you doubt me, you can ask any of her therapists and teachers who not only are amazed by the progress she shows every year, but her work attitude and desire to succeed.  But, I will say, if not for the mama bear of a mother she would not be doing as well as she is.  Also, in the past six years, my wife has started a foundation at my children's elementary school which has raised over $50k in its first two years, run a multitude of half marathons, finished a half-ironman, became a great cook and pushed my ass to workout countless times.

This week, my daughter's halo came off at the doctor after wearing it for eight weeks.  She will now be in a neck brace for an additional 7 weeks and then will probably wear a neck collar for a little while after that.  She should make a great recovery.  The night it came off, my wife commented that our daughter is her hero.  I would venture my wife is my daughter's hero.

In my opinion, they're both incredible and I'm lucky to have them both in my life.

Jon Stewart nails Fox on the "War on Christmas"

As a Jew in the US, the idea of a War on Christmas just seems ridiculous to me.  The fact is, I had to tell my kids to lie to their friends and just keep their mouths shut when they mention Santa Claus.  I don't like having to tell my kids to lie for you, but it's the right thing to do for other reasons.

However, Jon Stewart nailed it this year in the annual mocking of Fox News' War on Christmas.  Two of my favorite parts of the show:

1. On the proliferance of Christmas specials, there's even a Flinstone's Christmas special, Stewart pointed out, meaning "there’s a Christmas special celebrating Jesus’ birth thousands of years before the birth of Jesus."
2. On Bill O'Reilly's argument that Christianity is not a religion, but a philosophy, Stewart replied, "While I can get an A in Jesus' philosophy class, I don't get to go to the after party

Enjoy

How OptumRX legally screwed me out of $150

I take a number of drugs for Parkinson's.  One of those drugs is Requip XL (Ropinerole ER).  This drug is the same as the drug Requip (Ropinerole), except it has a time release capability which means the drug company that created it, could keep it from going generic, longer.  The advantage of taking the time release version is that you get a little bit of the drug over the whole day as opposed to large doses that taper off.  The good news is that the drug just went generic.  The bad news is that my prescription plan through UHC has not yet approved it for generic pricing.

Nevertheless, my pharmacy, OptumRX, in their infinite wisdom as a generic pharmacy sent me the generic version of the drug.  They also charged me the same rate as it would have cost if I they had sent me the brand name of the drug.  I called them and asked since I was paying brand name prices, I wanted the brand name drug.  They basically said, tough.  They sent it out and there was no indication on the prescription to fill as ordered instead of using a generic version of the drug.

Now understand this, I would prefer to have the generic version of the drug, but for generic prices.  The fact that I called them immediately upon receiving the medication and they did not call me back is indicative that they knew what they were doing.  I called back a few weeks later, and after discussing with a customer service representative and her supervisor, I asked to talk to the pharmacist who was in charge of making the decision.  I was told by the supervisor that the pharmacist would not speak to me and the decision was final.

The problem is, I have no recourse and the pharmacy knows this.  They are the only mail order prescription service that my health plan uses and they are on the whole much less expensive then going to the local drug store.  Nevertheless, I will probably be transferring this prescription to a local drug store, because then I will be able to see what I am receiving and quickly be able to determine whether the generic brand has been accepted by my health plan and the price will go down.

For reference, my plan offers Tier III drugs such as Requip XL for $170 for a three month supply, while a generic brand will cost $20.

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?

The Wealthy Pay the Exact Same in Federal Income Taxes as Everyone Else

I'd like to propose a change in an argument I've seen online a great deal.  I've been seeing this argument in one form or another for the past 15 years (at least since Steve Forbes ran for President in 2000).  The idea is that a flat tax would be a fairer system of taxation because currently the rich pay a higher percentage of their income than the poor or middle class.

What this argument totally ignores is the fact that the rich actually pay a higher marginal tax rate.  However, they pay exactly the same rate as a poor or middle class person for the same income.  For example, a single person with no dependents, up to the first $8700 in income has a tax rate of 10%, no matter how much subsequent income they earn, for income between $8700 and $35k everyone has an income tax rate of 15%, and so on, until you reach the top tax bracket and currently pay a 35% federal income tax rate.  One of the big issues is that most citizens truly do not understand marginal tax rates.  They believe, incorrectly, that if you are in the top tax bracket you pay 35% on all of your income.

Also, I'd argue that the lower income is more important to the taxpayer, that it makes sense the rates go up.  One way to look at this is to calculate the opposite of one's Return on Investment for these different groups of individuals or families.  A rich family will clearly save more and spend a lower percentage of their income than a poor one (note:  there are always exceptions).  Therefore, the money at higher income levels is not as valued as the money at lower levels, and to match the value, should be taxed at a higher rate.  BTW, yes, I know I'm reaching here; but that's the beauty of having one's own blog to write down your thoughts.


Caveat: This totally ignores looking at standard deductions as well as other deductions for which people are eligible.  This will be a big issue if Romney is elected, because he has stated publicly that he will eliminate many of these deductions in order to reduce overall rates; however, I did not include deductions for simplicity.  However, since the deductions are taken off the top level income, if you have enough you can drop your marginal tax rate below the $85k pretty easily depending on your income.

The other point that is missed in whether the rich are overtaxed, is the fact that we are currently near historical lows for the rich in terms of their marginal tax rates.  In fact, this guy ran the numbers and determined that:

 if you want to maximize growth, the top rate should be raised to about 64% and the tax burden on folks at the lower end of the income scale should be lowered.

Now before you say, but 50% of people pay no income taxes, the lower end rates in the analysis also included other taxes like Social Security and Medicare which are regressive taxes taken out of your paychecks as FICA.  Why is this important, because one of the main taxes the GOP has tried to raise is the FICA tax rate which was reduced as part of the stimulus package that Obama in the beginning of his first term.

So, when someone tells you that the rich already pay their fare share of taxes, you can tell them, they paid the exact same amount as everyone else.

Open Letter to my Family

I was thinking of sending this letter to members of my family that have said they will not vote for Obama.  I know it probably will not convince any of them; however, I'd like to know what others think.

I know election time is coming up and it is not a big surprise that I am voting for Obama.  However, I am writing this letter to ask you to vote for him as well.  I know that some of you did not vote for him in 2008 and some of you who did are switching over to Romney because you don't like how he implemented his policies over the last four years.  I do have one argument to make and if that does not convince you fine; but, I'd like you to consider one thing when you do vote for Romney.

My daughter.

Now I know many of you have or continue to have health issues.  And the fact that you don't see how "Obamacare" is most likely the reason you will have healthcare in your old age is beyond me.  If Romney and Ryan are voted in with a majority in Congress and the Senate (definite possibilities) and you have any pre-existing condition and buy your insurance on the open market, you will not be able to buy an affordable plan.  If you reach an out-of-pocket maximum which will become legal again if Obamacare is repealed, an expensive monthly treatment will soon eat into that lifetime maximum along with any hospital stays you may have.  If you are out of work or lose your insurance for 90 days, you will automatically not be eligible for an individual policy that excludes pre-existing conditions.

Oh, and if you say, I'm already over 65 and receive medicare, they won't change mine.  Yeah, right.  Once everyone else sees that they have no chance to receive healthcare like the baby-boomer generation does, I'm pretty sure the rest of us will make sure that discrepancy goes away.  Also, I know the baby-boomers are considered the me generation, but "F.U., I've got mine", is no way to treat your children and grandchildren.

However, getting back to my daughter.  Do you really think there is a chance in hell that she will be able to get any form of health insurance after I stop working?  The only reason we are able to cover her is because I am on my large employer's group policy.  What do you think is one of the reasons I've worked there for over 19 years is?  Also, you say she receives some medi-cal to help offset many of her other medical expenses (copay and deductibles) we've faced over the past six years.  However, they have already stated that most states will receive 30% less in medicaid dollars if "Obamacare" is repealed.  Who do you think will be one of the first to be kicked off the medi-cal rolls, someone who uses medi-cal as supplemental insurance or someone who uses it for everything?

And if you think this is 20 years down the road, you are kidding yourself even more.  Yes, my Parkinson's is under control, but it is a deteriorating neurological disease.  While I hope for better treatments and possibly a cure in the next 20 years, I really have no clue how long I will be able to work.  My doctor gives me ranges of 10-20 years.  What happens to the rest of my (our) family after that?  Many of you know I have already begun discussing DBS with my neurologist.  Thank goodness I have insurance that will probably be willing to pay for this.  See my length of employment for reasons why.

As for another example, Romney's plan calls for making the Individuals with Disabilities Education Act, or IDEA, into a national voucher program.  Part of this program helps fund all the therapists and aides that are required by the school to meet the needs of children with disabilities.  Please, relatives who worked in education their entire lives, explain how a voucher program will assist my daughter in receiving the OT, PT, Speech Therapy, DHH and other therapies and assistance that she receives from the school district.  She currently receives a larger percentage than most children and with a broken neck, may require even more for the next few months.  Do you really believe any voucher program would allow for different monetary values per child and do you believe she'd continue to get these services in school.  Since we'd get vouchers, the school districts wouldn't need to hire anyone because they could then tell us to use outside providers.

Thanks for taking the time to read this.  If you're still going to vote for Romney fine.  But I hope you can come up with a better answer than I just don't trust Obama,  Because if you trust Romney more, we are at an impossible impasse.

Learn to be grateful

EDIT: I realized those just seeing this post probably don't realize what I'm talking about.  My daughter broke her neck on Friday.  See my previous post linked to in the next paragraph for more information.

I was angry. Very angry for a few days as shown in my post Sunday.  Since then, I have moved on, and accepted how lucky we were.  The reality is, my daughter was destined to have this issue and the fact that she is not paralyzed and will recover from her injuries is at a minimum, a miracle.

My daughter had a congenital defect called os odontoideum. Her doctors believe that this issue has been in the making for a while, and whatever caused her to collapse basically was the final straw.  The real incredible thing that I have seen are my wife, my daughter, my son, my employer and our friends and family.

I"ll start with the latter.  Our friends and family are amazing.  The love and outpouring they are giving us is beyond expectations.  We have no local "family" as both my wife and I grew up in other cities and states.  Every single one of our immediate family members offered and would have been on a plane within a day. They said this, and I know they meant it.  I know this, because when our daughter was in the NICU for 3 months after she was born, they did this.  There were literally only a handful of weeks that we did not have a family member fly out here during that time, and the times there was no one out here were because my wife and I needed some space.  My wife and I get constant texts from our family just checking in and seeing how we are doing without the expectation of an immediate response.

I said we have no local "family" but we do have family.  My wife and I have a local support structure beyond measure.  People often laugh at Facebook and question it's value.  After we informed our immediate family, my wife wrote an initial post on Facebook that we were dealing with this.  Besides the prayers and well wishes that were sent to that post and out to the world, our friends started to take action. Our friends from our synagogue established meal delivery to our family and are engaging other friends who want to assist as well.  Offers came in from everyone to assist in taking our son to/from school and activities while we are at the hospital, and setup play dates to keep him busy.  It's funny that my two best friends in town are not on Facebook, but I also must thank them because each has called me multiple times just to check in and see how we are doing and provide all the same offers that our other friends have made.

I have worked for the same company for over 19 years.  I may not make as much as I would have if I had left and gone to work for other companies, but I'll tell you what I do have, a company and management chain that understands my situation and appreciates that I will do my job, but need to take care of my family first.  I wrote a basic message to my boss and her boss saying my daughter had an accident and was in the hospital for a bit.  I went into very few details and said I would be out of the office for the week.  The response I got from everyone was your family is most important, we'll cover for you.  I tell that to folks at the hospital, and they are amazed.

My son stepped up and is delivering.  From the moment my daughter got hurt, he has been all about wanting to see her, make her laugh and happy and hoping she feels and gets better.  He has been well behaved for neighbors who are watching him and appreciates everything.  I took him to Sea World this weekend for a few hours, just so I could have some time with him and he could feel a bit normal.  He wanted to win a stuffed animal for his sister, and not only did he do that, but he won a six foot stuffed animal for himself at the same time.  He was so happy but still thinking of his sister and how much she'll enjoy her little animal as well. He is constantly reminding my wife and I that he wants his sister to see the animal as soon as she wakes up.

My wife is amazing.  She sat and slept with our daughter the entire first night we were in the hospital.  This is a woman who has run multiple triathlons (including a half-Ironman) and over a dozen half-marathons in about the last two years.  However, she is also one of the main reasons my daughter is thriving so well. She is the epitome of Mama Bears and understands my daughter better than any of the doctors that care for her.  She also has grounded me and is so positive as I described on Sunday.  She realized quickly that our situation could have been a lot worse, but wasn't and appreciated that most.

The most inspiring person I know is my daughter. This is a girl who has beaten the odds and expectations every time.  Her attitude, drive and determination are why I know she will be ok.  When her new doctors and nurses this week have read her chart, they're amazed at where she is at and how far she has come.  Every therapist this girl has ever had, loves her for her work ethic and determination.  My wife once wrote a blog post describing her determination and it sums it up perfectly.

Like my wife constantly says, I am grateful.  I just needed some time to realize how much.

Personal Rant

You're only given as much as you can handle at any given time

My wife and I hear this saying a lot. Besides the typical family stuff, the big issues we get to deal with: 

1. My diagnosis 6 yrs ago at 34 with Parkinson's 
2. Our daughter was born with a whole host of issues (deaf, vision-impaired, balance-disorder and she had a tracheostomy and feeding tube for multiple years).

However, to me, it's starting to mean thank goodness it's you, not me. This weekend it has reached a point where I am just pissed off and am moving back from acceptance to anger.

On Friday, my daughter broke her neck at gymnastics when she fell. Yes, I did say break her neck.  Luckily, she is not paralyzed which often happens with these type of injuries.  She now sits in a hospital with tubes in her once again and a months long recovery having to wear a contraption called a halo and still requiring one more surgery to fuse two vertebrae in her neck. More than anything I'm upset because she does not deserve this.

My wife is still looking at this as it could have been much worse which is true, but I'm just pissed. Leaving my wife at the hospital the first night at 3 am, driving home, I was just screaming out in anger for most of the ride. Our friends and family are very supportive but when I hear someone say this, I just feel like telling them, I'm done, it's someone else's turn.

Consider this rant for what its worth, absolutely nothing.  However, I hope it gives you some insight to what is going on in our family.  I know I'll get past the anger; it's just hard when I see so many not appreciating what they have and calling those of us who do sometimes need a little assistance, "takers."  These people are calling folks like my daughter and I "taker" because for the rest of her life, she will most likely need help with things like her medical bills.  However, they will never hold a candle to my daughter who has gone through so much and from the start is the patient all her therapists look forward to working with and hold up as the example of getting past the diagnosis and achieving more than anyone thought possible.

Pre-existing Conditions and the Presidential Debate

If anyone with Parkinson's watched the debate last night on domestic issues and felt that their healthcare would be safe under a Romney administration, think again.  In fact,

Mitt Romney’s top advisers acknowledged that, as a result Romney’s plan to repeal Obamacare, people with pre-existing medical conditions would likely be unable to purchase insurance.

The fact of the matter is, that Obama even explained the details of Romney's plan better than Romney, right after Romney said that pre-existing conditions would be covered under his plan.  Obama said,

But let’s go back to what Governor Romney indicated, that under his plan he would be able to cover people with pre-existing conditions. Well, actually, Governor, that isn’t what your plan does. What your plan does is to duplicate what’s already the law, which says if you are out of health insurance for three months then you can end up getting continuous coverage and an insurance company can’t deny you if you’ve -- if it’s been under 90 days.

What that means is if you are not currently covered or you lose your insurance for more than 90 days, you're out of the system and have no way to get back in because of your pre-existing conditions.  I find it ridiculous that Obama had to explain to Romney how his health plan works. Although, it is not surprising that Romney did not accept the explanation.

Joe Biden vs Paul Ryan in Debates

I'm going to take a moment away from exercise and Parkinson's Disease to ask the question of whether the GOP is nuts to think that Paul Ryan will mop the floor with Joe Biden in the debates?  Did they not witness the 2008 Democratic Primary Debates.  Some of the best moments came from then Senator Joe Biden.

On Rudi Giuliani


On what it takes to get things done:


And probably the best response to any of the questions:


Joe Biden may make some gaffes, but I want the guy with a heart like below to be VP.

Quickie

Yes, I'm still around.  Just haven't had time to write much lately.  I am exercising, though, not running (I find it boring).  I'll update more this weekend.

Yes, I do like Twitter

I was having a conversation with a relative who was railing against facebook and saying she preferred to interact with people on a one-to-one basis and didn't understand why people spent any time on it. While much of this conversation centered on facebook, I realized she was basically saying all social media.  There are two issues with this:

1. Most people who are on facebook, don't really like it, but realize the value in it.
2. All social media sites are not the same.

As to the first point, I use facebook for family and friends and it works.  Before facebook, I would talk to some relatives on the occasional trip back east to visit the family and I'd maybe send a friend from school (elementary->college) an email.  I don't actively seek out people from my past, but I enjoy hearing what's going on with people I know.  I was recently contacted by one friend from elementary school and found out he graduated Yale and Harvard and was doing work equivalent for those schools in the government.  Besides making me have a small inferiority complex, I thought it was pretty cool.  I don't feel the need to check facebook every day, and do not.  However, I like being able to find out a friend had child, got engaged, is doing a comedy show, etc.  Also, as to my relatives, I have more contact and interaction now with them then even when I was growing up on the east coast, and facebook is a good part of that.

A saying that both my wife and I like is:

Facebook is for people I used to know, Twitter is for people you'd like to know better.

Social media websites are definitely not alike.  Everyone knows if you are making a lot of changes to your linkedin account and connecting to more and more people, you are probably looking for a change in employment.  Twitter is for finding people with common interests or ideas or situations.  I've been able to learn so much more because of twitter and the people I've met on it.  The main folks I follow fall into one of four categories:

• Folks with PD or other neurological diseases and their caregivers and doctors
• People who tweet about politics (journalists and liberals for the most part)
• Scientists of all makes and varieties
• Some techies

What's great about twitter is some of those people I follow, just to see what their doing or saying, follow back.  For instance, a really cool one happened this week, when the MIT Professor Max Little who is testing a system to diagnose Parkinson's Disease over the phone followed me.  I had found his unused twitter account a month ago and he has just started to use it to get the word out more on his research (they are trying to get over 10k samples and have about 6500 as of a couple days ago). It's nice to be able to provide feedback and get real time information about work/people that either effect you, inspire you, educate you or make you more aware of what is going on in the world.

BTW, if you have not yet participated in the study, please click the link to get the telephone number and call. You do not have to have Parkinson's to do the test as they want both those who are diagnosed and those who do not have the disease.  

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 2 Week 5, NHS Couch to 5K

I actually repeated week five this week and did the last workout today.  This week, every workout was different ending with a run today of 20 minutes straight.  I have not run 20 minutes straight in a while and was a bit nervous.  However, I made it and using gmap-pedometer.com, I was able to determine I ran about 1.9 miles in the 20 minutes or about an 11 minute pace.

While a bit slower than I wanted, my goal is to do the full 5K in under 30 minutes, the fact that I made it through the 20 minutes in a pace that was pretty close, tells me I'm on the right track and the program is working.  I don't feel bad that I am repeating weeks, because I am doing this at my own pace and have no actual race for which I am training.

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.

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.

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:

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.

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.

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.

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,

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.