Dystonia Doesn’t Slow Me

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. 

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. 

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.

The Problem.

June 5, 2014

This explains itself. Give it a listen.



I think we need to make governmental benefits solely for people who are unable to work or have difficulty finding work. People like this person gives people who need benefits a bad name.

I was diagnosed with dystonia when I was 13 but I wasn’t classified as “disabled” until decades later.

You see, in order to get on disability you have to get tested to prove you are disabled in governmental setup places (that were dilapidated to say the least) and once they say okay you are disabled they then give you all kinds of stipulations (can’t have more than x money in your banking account, etc, etc but they let you have a car…thanks).

Looking back, I don’t know if it is worth it. You get free medicine but generic medicine is $4 so thanks? and free er visits but I don’t want to waste tax dollars just because I can. I could also qualify for food stamps – which is called something that doesn’t make it sound so “needy” but I again don’t. They allow you a free eye exam every two years and a pair of glasses.

The last glasses I got are the cheapest of the cheap. Like the paint started falling off in months and within a year my lenses were all scratched. I know this because I bought a pair of legitimate glasses not long ago and they pointed out the flaws.

The “insurance” does not pay for my neurologist so I have to pay out of pocket for my yearly visit to get my prescriptions refilled.

The worst thing about being on disability is that the government has their prying eyes on everything you claim (banking account information, where you live and with whom, what your monthly bills are) and they do a follow up phone call every year to make sure everything is the same but they do monthly computerized checks on your account balance.

Some people are glad to be on disability. I am not. Maybe if you were given enough money to live on without some outside help but no. Instead the government spends millions of dollars on sports lawsuits, trying to find a missing airplane in the middle of the ocean and tons of other things.

Fifteen Minutes?

April 9, 2014

I see my neurologist once a year just to get my prescriptions refilled. Nothing more, nothing less. From the beginning years ago, I had six month appointments but my last visit I got it switched to yearly visits.

Based on previous visits I wasn’t looking forward to this one and I rescheduled twice – both later. Anyway, I got there and was out the door with my prescriptions in hand fifteen minutes later. Literally. Oh, and because they don’t take governmental insurance I pay out of pocket – so $130 for 15 minutes. So, they value their “services” at over 500 an hour. Joke.

They used to try and sell me on trying botox or other treatments and I always said no and that I want to just maintain how I am now. At least this time they didn’t try to.

I have written a few blogs on these guys before as well as a business review. Maybe they have seen them? Doubtful. Seems like they have too good of a good thing going to care about the people they are working for.

Health “care” .gov

April 1, 2014

I don’t know about you, but personally I am tired of seeing people on social media say “Thanks Obama for ObamaCare” or the  ACA. I am all for universal health, but making people pay for it and penalizing them for not signing up  doesn’t make much if any sense.

It is going to make more public practitioners go private  but then what doctor takes governmental insurance anyway? Not many that’s for sure and if they do, its not advertised. Doctors don’t take governmental insurance because the reimbursement is so low.

Private companies can be charged many times more so it leaves people who need to see a doctor more than likely paying out of pocket unless they go to the ER or a clinic.

It’s a joke and has been made a joke of. More older people have signed up and in an effort to make a push Obama has put commercials throughout the NCAA tournament trying to appeal to the younger demographic.

This is a satire of it on this past Saturday’s SNL.

On the last preliminary election ballot there was an option to repeal ObamaCare. It won with 97%. I wonder how it will do in November and what will happen.

There have been a lot of articles, news stories and other things saying why this ”plan” will not only hurt the medical industry but also the economy for years to come.

It is just a step up from Medicaid and that is only because people are paying for it.

It is going to be an endless cycle of revisions depending on who is in office. I just hope they drop the term Obama Care and make the ACA the name. I wouldn’t want Obama on the name of my ”plan”.

I have been involved in sports..well, for a long time. I guess it started with running and I slowly built up my endurance and speed. I began doing races and by 2000 I did my first half marathon, the following year I did the same race.

I soon realized it wasn’t the race I enjoyed – it was the challenge to meet and exceed personal goals. I hated and still hate racing. Its more of a dog and pony show for me.

Up until this last year, I ran over a thousand miles a year.

Last summer, I started frequenting city pools and several of these pools are lap pools so slowly I got into swimming laps. So, much like running, I started off slowly. I was barely being able to do one length much less a lap but I enjoyed it so I kept at it.

Now, months later, I have two kick boards, I am on my third pair of fins and have built up my endurance to six plus days a week and today I passed my distance record – 5 miles in six days.

When I tell people I have done x distance swimming and they are like “ok” I think they think its like running/walking distance. Swimming distance is much different. Imagine swimming four 400m laps..like around a track. Much different.

Anyway, back to my running, at races and when I would run, people would say basically keep doing what you are doing you motivate me. The same thing has happened with swimming too.

I mean I guess if I motivate people by doing what I do then it is a success on my part. I like showing people that despite my physical stuff I am able to do whatever I set out to do.

I have noticed that more often than not after people are diagnosed with a disability of any type, they always seem to blame the disability on everything. I think if they really want to do something they will find a way to make it happen.
Then again, I don’t take much credence in doctors or the like. I have found they try to make you feel you need them more than you really do so they can try to push new medicines and procedures on you. While I could try new things, I don’t want to. I just want to maintain where I am. There is too much “Hollywood” in the medical community.

I have wondered what is the all mighty governments plan about disability benefits. Right now under the plan given to me, I am given less than what it takes to live on so I have to rely on others to “help”.

Every year the social security administration will call and ask the same questions. Why? I do not know. They have programs that tell them the answers. But they ask like in the past year have you been out of the country for more than 30 days? Really? How would i pay for it? Stupid. They also ask really really impractical questions.

My question that I have say in x years when I may get money will I be disqualified because I have too many sources of income? Or what happens when the money runs out? Why not screen everyone to see if they are truly disabled or just have no desire to work?

I feel like I live in the early century when people buried money because they did not trust the banks. Now for me its not the banks I don’t trust it is the government.

By the way, that show Doomsday Preppers is so funny. If things get as bad as the preppers think I would rather just live and let live instead of living in some bunker buried. Those people have too much money on their hands and have watched one too many episodes of walking dead.