Dystonia Advocacy Day

April 15, 2015

Every year around this time, people affected with dystonia and other members of the dystonia community go to DC to meet with various state elected officials. 

I have been a part of this several times years ago. I guess I was jaded by the possibility of meeting a senator etc to think that we were making a difference. 

I now have a large distrust of politicians and I honestly think that this event is more for pr than anything. I have met at least five elected officals, we had our pictures taken and in some cases they were published.

The foundation picks very expensive hotels in DC for meetings and for the group to stay in..so expensive that it limits those who can afford to go. From my past experiences, 90% are over retired age. 

It has been at least five years since I have been and yet I know what they will likely be told to say. Nothing changed when I went the first time I went to the last time and I am pretty sure its the same this year too. 

I had fun going when I went but the fun wasn’t meeting the politicians or rather their aids. The fun was meeting and hanging out with others in the dystonia community. 

While the foundation has these events yearly, their large bi-annual kid and adult symposiums have stopped because of “lack of funding”. The symposiums are geared more to information for newly diagnosed or those seeking new treatments. 

What I really enjoyed about the symposiums was hanging out with people with dystonia and parents of young kids to be like hey I made it out with it and you shouldn’t expect any less for your kids. I think that is more important than meeting with some elitists aids for 15 minutes max. 

Scientology Documentary

April 12, 2015

There is a recent documentary by HBO on Scientology that I found interesting and you might as well. If you have HBO, try and catch it on tv or just go to the HBO on demand and then go to documentaries. 


March 14, 2015

The initial concept to my understanding  was to get a large number of independent bands that are wanting to be signed to play and well, hopefully get signed.

 Now, it is technology, music and film. I do my best to avoid it. People worldwide come too. Celebrity sightings are all over downtown. 

I am not really into music and movies are okay I guess but I don’t care enough to pay crazy amounts to park and find “free” events. 

To get into the badge only events, you have to pay over 1,000 dollars to 75 depening on the duration and what events its for. However, most of the events have free everything from sponsors stuff to booze and food. 

I would rather look at pictures than deal with that scene. 

Working on my Fitness

March 7, 2015

I am out and ”working” out say 28-31 days out of a 31 day month. Honestly, unless it is raining so heavily that I can not get to the place or its too cold for it to be open I am usually doing what I do.

During the summer (Mid March – October) I can go an entire month or months in a row without taking a day off.

I flipped from running to swimming over a year ago and haven’t looked back. Its the same basic movement but with swimming its more core centered and your breathing is different. Its basically like getting on a workout machine with the resistance all the way up.

Last year, the coldest I swam was like 42 in a heated outdoor pool. Granted that was cold, but this year is way more. I have swam when it was 33 outside in a heated pool and in the 40s numerous times.

Now, when its in the 50’s and sunny, I just go to the spring fed pool. The water is around 68 year around.

I don’t go because I need to. I am far from obese. I go because I enjoy it and it gives me something to look forward to everyday.

At one of the pools (the heated one) the guards are always complaining as I pass by them. They only get 8.50 an hour but they just sit in the stand for 20 minute shifts with sweats on. Pretty easy if you ask me.

The other day, one of the guards was talking about the cold and was something like yeah, if I am off I would come here to swim but not when it is x degrees cold.

Its funny to listen to other peoples opinions.

After tomorrow (Sat) we have a week before the winter pool season is over. I like it because there is more to look at but there will not be any more lanes to yourself I don’t mind though.

Card Tricks

March 4, 2015

— If you haven’t watched House of Cards season 3 yet I might spoil it in this —

In seasons one and two every episode left you wanting more which made me watch mass episodes in a row. Season three however was not even close.

It didn’t even start to get to the ”I have to see the next episode” until episode 10/13. It was very predictable and I think it should have ended at season two now that I have watched three.

I just finished season three and didn’t even realize it. I watched the last episode earlier and I just now thought I was going to watch the final episode or close to it but no it was over.

I remember shows like Dexter, Oz, Boardwalk Empire and others kept you binging for weeks but this last season left me disappointed.

I have rather easily came to the conclusion that if House of Cards was real life, I think Kevin Spacey could contend with Obama in being the most ”I do what I want” president.

Medicine is a racket

February 5, 2015

The whole medical “thing” is a racket. Lately when I have gotten my prescriptions refilled it lists the real amount. I take three medicines, two of which I “need” and the other well not so much.

The total costs of all three a month would be slightly over $300. What is crazy is Keppra is nearly 200 and its not one that I “need”. The other two that I have taken forever are 60 and 40ish respectively.

I watched a documentary the other day and they were talking about the crazy costs of American healthcare and how many people go overseas to get treatment for a third or less than the cost here.

The place featured wasn’t what you are thinking. It looked like a five star hotel and overlooked the ocean and had the newest technology. In America, the medical field is an open game on what to charge.

Some kind of regulation needs to happen but with our current state of medical x,y,z it may be better to go overseas.

Funny Money

January 12, 2015

We live in a sports world where when an athlete at any age shows any semblance of being talented they get celebrity treatment.

This is very prevalent in football. ESPN releases their top 500 HS recruits and no matter the age they are being followed on Twitter, talked about on the radio about committing to a university constantly and having articles written about them.

Once they decide on a school, it is the same but with pressure of producing. If they are good enough to make the NFL, they get way over paid to play a game.

Most pros are in their mid 20s and the current oldest player is only 43. He is a kicker.

I can see why players act foolish on the sidelines or during the game. What do they have to lose? How have they been treated all their lives? They will likely get talked about on sports talk for the week and if they get fined, its just a small percentage of what they make a game and it goes to charity so its a tax deduction.

The strange thing about NFL is you only get paid for 17 weeks plus playoffs if made but because their yearly salary is so high it doesn’t really matter.

Another year, another swim

January 3, 2015

This time last year it was warmer and I remember swimming on both NYE and NY Day. The high was in the mid 50s.

This year however was colder and rainy. I swam on NYE and it was 42 but just cloudy but on NY Day, it was only in the 30s and was raining all day so I skipped…and besides football was on literally from 11am until after midnight.

I went today. It was 42 cloudy and drizzling. The water was warmer in the pool than the air so it was steaming up and could see it from the parking lot some ten or so yards away.

Usually I change poolside but today I didn’t. Once I was ready, the steam was so thick I couldn’t really tell who was in a lane and who wasn’t. There was only three of us so it wasn’t too hard.

I did what I have been doing for months, a half mile, then got my stuff and ran to dry off. During the summer, I will do over eight miles a week but there isn’t really a reason to now.

And to think that in two months max from now it will be pool weather for all the normal people. This is my favorite time of the year. Less people.


December 18, 2014

Now Christmas advertising starts right after Halloween if not before so the consumer can wake up early in the AM after Thanksgiving to save some money on gifts. Its not about Christmas now its about spending money and getting the consumers to spend more of it when many of them have less to spend.

I think your birthday should be first gift wise to Christmas and even then there should be a cut off on the age. I mean how many 40 year olds have big birthday to dos and those that do probably shouldn’t.

Point is Christmas is for kids, not businesses and it should be treated as  such.

…and thank you North Korea for saving American’s from another crappy Seth Rogan film – Horrible Bosses.


November 21, 2014

I know no matter how much we spend on border security and the like there will always be illegals sneaking in. But granting them amnesty is a bit much.

They probably do the jobs most people wouldn’t for little pay but they are getting/will get governmental benefits many of us had to hire lawyers to get.

It doesn’t make sense. Neither does any of the  current administration for that matter. I think the November mid term elections were proof that many real Americans feel the same way.  I saw earlier Obama’s approval rating dropped to 36 percent this week.

Where are those 36 percent? Probably crossing the border as we speak or rather type/read.


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