August 22, 2015
I am watching the movie Love, Drugs and Other Things at the moment. Its about a pharmaceutical rep who falls in love with a patient with early on set Parkinsons.
The lady with Parkinson’s blames everything on her being “sick” and uses that as an excuse for her life situation.
I think that a lot of people with conditions call themselves sick and automatically write themselves off or they use their sickness as a crutch.
You are only sick if you think you are sick and it really bothers me when people in real life act like she does.
Also, pharmaceutical reps are pretty well depected in this. Glorified door to door salesmen.
August 11, 2015
In July, NPR published an article saying despite the 25th anniversary of the ADA, more than 1 in 5 people with disabilities are unemployed. Why Disability And Poverty Still Go Hand In Hand 25 Years After Landmark Law
That being said, I think the general population look at those with disabilities in a diffferent light especially those with visable conditions. Its kind of like they expect you to be unemployed and just have the ability to do nothing.
During college, I began running and racing long distance and continued after college. I did it because not only did I enjoy it but also to show people that despite my disability I was able to do exactly what they can and faster in some cases.
After races random people would come up and say things like “I am so impressed you ran that” or something to the effect they were surprised that I was able to run x distance.
It was annoying. I got tired of racing and the thousands of people so I started just running long distance where everyone runs. I became a familiar face among the people on the trail and people began respecting what I could do instead of breaking their misconceptions.
A few years ago, I started frequenting the numerous city pools over a summer and I slowly transitioned from being a runner to a swimmer…year around outside.
The swmming community here is much older than the running community and once you are a regular at a few places people know who I am. I mean, I am pretty easy to recognise.
I have not ever seen a person with a disability doing laps in my few years of swimming and I go 7 days a week but when I ran I would sometimes see someone with a physcial disability.
Despite my familiar face people that I know bring up their surgeries that they have had. I guess it is their way to connect to me indirectly without asking me about what I have. Or I will overhear people talking as I am doing my laps. They say he does x miles a day everyday. Nothing negative its always positive.
So, I think that by showing people I am able to do what I do despite my limitations it is hopefully breaking the sterotype.
July 8, 2015
Well not music specifically but when I go to sleep I always have something playing via internet radio.
Lately, I have been switching between NPR, a local college radio station and a few sports talk stations. All result in way different dreams but the NPR dreams are by far the most strange.
Once I am awake I usually forget what I dreamed but because I sleep randomly I will change stations. Like I will go to sleep listening to NPR but I wake up at 4 and switch it then I will go back to sleep until say 7 on something different.
For the majority, sports is least dream worthy and NPR is all story all talk so maybe that is why…
June 27, 2015
in the 08 and ’12 for the most part the campaign was all about universal healthcare, which to this day has so many changes etc to it that its not even remotely the same concept that got Obama elected.
In ’16, the topic is going to be the whole gay trend of the day and womens wages. The whole gay trend plays to the Democratic party well,because if you don’t agree with anything and everything you are automatically a hypocrite and a bigot. Most Republicans don’t agree with it. What happened to having our own opinions? Oh wai
Regarding the equal pay issue…how many women engineers or computer scientists are there compared to males? On the low end, what is the male to female teachers ratio?
On heathcare, I went to blue cross, and it was way easier I will give it that. All that was asked was my date of birth and my age. I was then given say ten plans to pick from. The cheapest was 85 and the most expensive was 2,000 a month. The deductible for the cheapest was $20k and for the most expensive, a few hundred. So you may be insured but you are likely to be paying out of pocket no matter what.
What happened to the Consitutition anyway? I did not know the Supreme Court could create laws out of the air.
June 24, 2015
Right after it started warming up, I set my weekly goal for swimming at ten miles. When I made it, I hoped to have it done by July or August. Last year, I topped off at 8.5.
Anyway, a month ago I did the ten and the following week I did as well. It was six days at 1.5 miles and a day of 1.
Since, I have decided to alternate because it wore me out. So, a week of ten then a week of 7-8.
May 16, 2015
I “know” a fair amount of people from swimming. I have been told their names before and more often than not, I forget them right away. A lot of people know my name maybe it is because I am in one of two pools seven days a week or that I am easily recognizable.
When I meet someone who I feel wants more than the “I am Matt” I feel obligated to give them my medical history but more often than not I don’t give it to them.
I mean, it has its pros and cons. I feel like its putting too much on the table upfront and if they really want to be friends I will be happy to share in due time. I honestly don’t have a problem telling whoever the first meeting to avoid the wrong assumption.
It is just another added element in the life of someone with dystonia.
My goal for the summer is to get to 10 miles a week swimming. Last year my high was 8.5.
May 10, 2015
I enjoy Austin. It is a city that really caters to being outdoors and for eight or more months a year its perfect outdoors weather. Whether you are running around the trail, swimming laps at one of the many city pools or just enjoying a park its probably one of the best cities for doing such things.
Austin is a city full of people with peter pan syndrome. Everywhere. That annoys me.
People who have lived here for longer than the influx of people say “Well, its Austin” when it comes to anything taboo or suspect about an action or people that may be considered questionable. To me its just justification for said behavior.
If I had kids I certainly wouldn’t want them to grow up here. The popular public pools are great and are well kept but say for a kid who is a sponge of their environment, I certainly would not.
At one of the big pools girls are very free to walk around topless and do it often.I Don’t mind but for some kid?
There are also these old men who wear thongs or less (its the width of a shoe lace and goes around the guys waist and down and in the front there is a small cover) . The thong men are everywhere. I think they just walk around to get peoples attention but the shoe lace guy does laps year around at one of the lap pools. Where a few feet away is a large kids area.
Today, as I was getting out and getting ready to go, shoe lace guy was doing laps in his own lane (I wonder why) and there was someone getting undressed to get in.
By the time I was all together he had womens bikini bottoms on. I could only tell because there were ties on each hip. I wonder if he got in the lane with shoe lace bikini?
Glad I didn’t stay and see.
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.
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.