New and Not Altogether Yet

[Doodles]

Hi

I've been diagnosed with idopathic myoclonus. Compared with most, It's relitively mild, but it still inhibits my ability to do certain things. Other things, I'm afraid to do. I'm a self-conscious person anyway and am prone to being a loner with a desire to be somewhere with someone.

I've had myoclonus symptoms since I was about 18, but the doctor told me I wasn't getting enough sleep and he sent me home to take a nap. Mom was not happy :rolleyes: . I ended up going into the military and had no symptoms until a little over a year of being in. It took 2 years to diagnose and treat until it was determined that the meds and the myoclonus cause too much of a problem and (realistically) I couldn't do my work.

After I was discharged I spent too much time with my parents trying to find a school that was right for me. I think like an artist and I'm not sure wether or not I have picked the right one. It's a really neat school, but it's expensive and the stress of trying to find money is causing the myoclonus symptoms to get worse.

I've been trying to get a job, but I am required to tell them why I got discharged and that inexurably leads to me having to explain my condition which causes them to freek out and not hire me. I'm a good artist and a fair writer, but I don't think I'm near the level to do it as a carrer. I don't have anyone to teach me so I'm kind of picking things up from wherever I can get them.

This is probably too long of a thread to read, but I've been looking for a place like this for the past 6 months.

If there is any advise anyone could give me, I would be grateful.
I'm also interested in just making friends. I don't know anyone here and these on-line dating services aren't helping - I don't have the money for them. :rolleyes:

[suede]

Hi Doodles,
It seems you have been ran through the mill. I'm sorry that life has been so rough on you.
I'm not really familar with idopathic myoclonus So I can't really reply to that, but I do know how it is to have illnesses that seem to take over your life.
I will tell you though that there are a lot of good people her on the forum that are informative and supportive.
I wish you the best and am looking forward to seeing more of your post.
Linda

[Doodles]

Thanks suede

I've found some great support here.

I don't know much about myoclonus either. There's not much that my neurologist can tell me because it's not well known. I've found out quite a bit, though, at forums like this and at WEMOVE. I'm still waiting for a confirmation email from them.

Thanks again suede - I look forward to hearing from you, too.

[Tootsie]

Doodles,
Is there any one at school that you could talk to? You have done an excellent job of expressing your problem with money for school, questioning your degree of artistic talent, and the influence of your condition on life choices. Most schools have some kind of counseling and support type programs for troubled students, no matter what the cause.

Are there any military programs that you are eligible for? What about local, state funded programs for vocational rehabilitation? It is imperative that you investigate all possible avenues of funding and career counseling to know what is realistically and financially possible.

Can you explain a bit more what kind of difficulties you have that impact job performance? I'm not sure I understand what myoclonus is, either. Some kind of involuntary movement? Cheerio.

[Doodles]

Doodles,
Is there any one at school that you could talk to? You have done an excellent job of expressing your problem with money for school, questioning your degree of artistic talent, and the influence of your condition on life choices. Most schools have some kind of counseling and support type programs for troubled students, no matter what the cause.

Are there any military programs that you are eligible for? What about local, state funded programs for vocational rehabilitation? It is imperative that you investigate all possible avenues of funding and career counseling to know what is realistically and financially possible.

Can you explain a bit more what kind of difficulties you have that impact job performance? I'm not sure I understand what myoclonus is, either. Some kind of involuntary movement? Cheerio.

Hi Tootsie, thanks for writing

Myoclonus is a symptom of some underlying cause. In my case the cause is unknown. It's different with everybody, but I'm lucky that I have a fairly mild case. What happens is that certain muscles have sudden, uncontrollable jerks. I've had attacks lasting several minutes in which case my whole body jerks and I have to just wait it out. Mostly, though - even on meds - it's just small jerks that cause me to drop what i'm holding. Often times, by lower jaw jerks which causes me to stutter.

I'm not sure whether my case is progressive or not, but I can function in everyday life. My problem is that this condition causes others to wonder if I can do a job or not. There are several jobs that I know I cannot do because of it. The medication causes drowsiness which leads to irritability which is out of character for me. I'm usually easily amused and fun loving.

For me, high levels of stress triggers the jerks as well as any kind of strobing lights. Lack of sleep - because I'm studying all of the time - causes me to jerk also. Jerks also happen when I'm completely still. It's a bit discouraging when I'm doing a drawing and my hand jerks the pencil or paintbrush all over the canvas.

I will get the GI bill like i normally would but that only covers living expenses. They don't consider me disabled - it's rated the same percentage as epilepsy. It's a preconcisting condition even though I didn't know about it until after I had entered and been in for almost 2 years. I find the fact that I didn't have any attacks during basic training or tech school surprising at this point.

I haven't actually checked voc rehab - I will, thank you.

The school has been very helpful in concidering the myoclonus, but there is not much that they can help with. I might not be able to go there much longer because it is for computer animation and staring at a computer screen all day doesn't help. I might have to give that up and concentrate solely on my art work. I'm happy to do that, but I'm not sure I could make a living at it.

I'm still very active in my personnal life as far as health goes - I bike at least 6 miles every couple of days. It helps to keep my mind off of feeling like I'm on crack all of the time. Some people have told me - not trying to make fun of me - that I look like I'm on crack...My eyes kind of glaze over and I'm kind of loopy because I'm so tired. My neurologist is reluctant to put me on any other medication because he said that I would probably have worse side effects.

I am trying a new gluten free diet that others say helps, but it's only been a day. We'll see how that goes.

[Tootsie]

Doodles,
Another thing you need to look into is the Americans With Disabilities Act. It is the federal legislation that requires employers to make "reasonable accomodations" for your disability. Look in the phone book, or look under the Equal Employment Opportunity Commision if you can't find it listed. They, (EEOC) at least could give you information about where to go to get information about ADA.

I've had some experience with ADA myself, and also worked with a woman who was legally blind but able to use computer software to do a call center type job. My big hangup was my tendency to totally deny that I should be called "disabled." It was in my favor in my situation, and I ended up getting total support from a doctor (Occupational Medicine) who put in writing, that although I did not fit the letter of the law, I certainly did meet the spirit in which it was meant.

You are relatively young and I hope resilient enough to deal with all the bureaucracy involved but eventually the system does respond. Consider it your doctorate in patience! At some point, you may want to talk to your doctors about seeing a specialist in Occupational Medicine. Those are the guys that have an understanding of what is required by employers. They could give you written documentation to show to potential employers. Keep in mind that any employer, is afraid of being sued if some of your muscular tremors, shaking or spasms, cause you to be injured ,or cause someone else to be injured in the work place.

As for making a living, have you considered going to street fairs, craft exhibits, anyplace where people with money congregate. Take a sketch pad, easel, or whatever your medium. Put up a few of your paintings or whatever. People gather around, will talk or ask you questions, etc. At one point, I was really stumped for a wedding present for a nephew. It was a second marriage for each of them and household goods were not needed. I had a friend paint a picture of the landscape in the back yard where they were married, from a photograph. It was unique, and special. I don't know if you could make a living doing all this but it may give you some ideas. Cheerio.

[Buttons2]

Hi Doodles, I just replied to your post on the myoclonus forum here.I totally understand your frustration & wanting to find a direction in which to focus your future.

You must believe in yourself. There are answers out there for you,just have to find them!

Take care,Buttons