March 2, 2016
On a nearly eight year stop, the Dystonia Medical Research Foundation decided to have another symposium. It used to be every other year and then nothing.
My first time to attend one of these was one of my best weekends I can recall. As the years went on, I still went. It was the same people for the most part and the same content from the speakers.
It came to the point to where I was like ok I will know what they are going to say, do I want to go and see the people? The last time I went it was like the people I have known were in this transition period and now have gone through at least one or two more. So who knows who will show up? Likely a lot of young families but beyond that I don’t know.
As for my apperance, it is highly doubtful. I don’t think I can justify spending a grand on travel, loding and food for a weekend to hear doctors trying to sell naive families on how they can cure your kid or make them more “normal”.
Its a shame for the DMRF too though because it is donor driven so as the older people die off they need people to replace them..who feel wanted from the DMRF but unless you are a pseudo celebrity your voice isn’t heard.
But hey, good for them starting it up again. Maybe its not too far gone from the last time.
February 18, 2016
…Not all of Austin just where I swim.
As I have talked about in numerous posts, there is a 1/8 mile in length pool right downtown. I go there most days in the summer and in the winter when it is warm enough.
This is my fourth year of going year around and I have noticed its the same people everyday no matter the season. They just come there say around noon and stay until dark. Everyday.
I go to workout and layout but I am only there for say 1-3 hours as opposed to the others. The demographics varies but the retirees stick together and then the rest of us have the rest.
I’d say the group I am thinking of ranges from 20s-40s. They are all a golden hue too. They either must have money or live in a rental with many roomates. Its like I am an observer of a 2016 hippie commune.
Maybe America won’t look like Austin because Austin is pretty great but its almost a certainty that the majority of the patrons are Bernie supporters.
Its just a shame they are waisting their lives napping and talking about herbal suppliments everyday. Its one thing to not be able to work but to choose not to work…that is what really bothers me about people.
Lately there have been a few older guys who sit at the top and talk loudly saying things Trump would say. Its funny to see the people look at them and give them dirty looks.
February 13, 2016
Its been several months since I last posted anything and its mainly because I havent had anything I feel like writing about. So I will give you a summary of what has been going on:
1. The same. Literally. I swim 5-7 days a week still but unlike other years where I went to a heated pool, I stayed in the spring fed pools. Even in 40 degrees after a few feet you will get acclimated to the temperature.
2. I dont remember of any series that I was watching but I finished Nurse Jackie a few weeks ago. It was alright but watching it continuously there were a lot of holes in the plots from season to season. Maybe the writers were thinking of keeping on with this or that but didn’t? I dont know. It was alright though.
3. The weather has been strange this “winter” the coldest day was the day after thanksgiving at 40. The week before Christmas it was in the 80s and we have already been in the 80s since several times.
4. Election. They should all just drop out and I don’t see why we still use the electorial college if “every vote counts” is going to be the slogan. Its not going to change though. I think popular vote would get rid of this party bias though.
5. Thats all. Ill write whenever I feel the need.
October 25, 2015
I watch sports a lot and one hundred percent of the time when something happens where someone is hurt the talking heads say that phrase and its followed with are with x,y z.
While its a useful phrase to coin I don’t think they should use it unless their thoughts and prayers are really going toward the thing they are talking about.
Also, after a game the star player is often interviewed and they say “I just want to thank God..”
I am pretty sure God has more important things to worry about than giving someone a good game or letting them luck out a win.
September 17, 2015
So, here pets are considered equal to or greater than people.
Anyway, I ran to Target with my dog in the back around 7 pm with the ac still on even though it was in the 80s. When I came back to my car, there was this lady hovering around my car.
She was like “Is your ac on?” I was like uh yeah and then she was like “I saw him painting and got worried so i went inside and told someone.” For one, all dogs paint and more importantly, mind your business. It would be different if it was hot out or if I didn’t have the car running.
I bet I know what political party lines she votes.
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.