seizure

I spent the afternoon with my sister on Friday at the Mall with my neckbrace on. I don't know if the comfort of the neckbrace (perhaps as a large sensory trick) contributed to this or not, but the dystonia didn't bother me much. I was even able to take it off at home without a major dystonic episode.

Yesterday, however, was really difficult. It was one of those days that steals my courage that I can just make do with the condition and live a normal life. It was one of those days where the sensory tricks don't do much and I feel like I'm having one big muscle seizure. I really wish this were something I could control emotionally.

...I received the invoice for my first botox procedure on Friday. Just per chance, I called the Parkinson's Institute and found out that a claim wasn't submitted towards my insurance (to at least count towards my deductible since it's out of pocket). It was a miscommunication on my part, we told them we'd pay for the procedure out of pocket in a rush to get it done. The lady on the phone was really nice and said she'd take care of it.

...Aside from the daily battles of the dystonia I can't help but spend a lot of my free time worrying about everything from my current job, to being on disability, to paying my bills, to salvaging any semblance of a career, to being accepted by people around me, to being able to get married and have a family, to the future. Being on disability is supposed to quell some of that unease and protect me I know but, as I'm relating to a lot of people that are in the same boat, I'm finding out what a scary place this is to be.

patience

I met with Dr. Liang today to go over the results of last botox treatment. She asked me a lot of questions about how disabled I am, observed my dystonic movement a bit, and we discussed at length how I should be getting on until my next treatment.

Unfortunately, I won't be able to have an increase in the botox until May. This means that it's another 2 months of feeling limited at home, waiting again to see if treatments might somehow work.

While I'm feeling hopeful in treatments (she helped me realise exactly how much I've gotten back), being out this long does make me lose a sense of security in keeping my job. This coming August will have been my one year anniversary. Guessing that May's injection will still be too low, I will be cutting it close to that one year.

At the same time, I'm thinking it might be best for me to start anew somewhere else. I don't want the stigma that I've been on disability and that I've been sick to affect my job relationships.

...The nurse said that I gained 4 pounds since last month. I would have expected more.
...On a personal note, 2 more months of being in my current state are more daunting in terms of human contact. I miss people, I miss my friends, I miss interacting with others, working with them, participating in life. I've been able to find things here and there to do with my spare time, and thank God and technology for connecting me with others through the net but nothing really comes close to being around others. I'm lonely.

3rd person

Forgive me if I sound like a broken record, but I was talking to a friend of mine that works in HR regarding my continued disability. As I expected, my company may most likely drop me at the end of 12 months of disability (October). The FMLA covers for that much, but then the company can act on the hardship it has on carrying the employee as well. This means I may potentially lose my insurance come October. Considering that I'm single, I honestly don't know how I'll be able to survive past that part. My insurance allows me to see my doctors who are trying to find treatment and who sign off on my disability checks, which I use to pay the insurance bills and keep me going.

You know, you always wonder how people make it through extended periods of time being ill and stuck in the medical/insurance world but to be in yourself is surreal. Considering that I have no control over this, it feels like I'm just watching it happen too. I'm just the guy that brings the forms from the post office to the doctor, that faxes them between hospitals and my company, that sits at home waiting for treatment to work.

There are times when I still don't believe it's me.

In limbo again

I don't know how this happened, but the treatments I received last month already seem to be wearing off. It's not as worse as before, but my sister agrees it looks like the movements are exaggerated again. My doctor on Monday said that maybe the botox is wearing off. I didn't believe him, but now that I think about it my positions seem to be more stuck now and a little bit of the pain is coming back.

I had a long talk with Martha at the Parkinson's Institute today. (I don't know why this is, but since this started I've spoken to several Martha's that have all been very helpful and understanding) We went over my disability forms for my company. She said that the form I sent her is the most extensive one she's seen. The current date for my return to work is June 15th (which we'll move again if treatment doesn't have me ready). I told her I was worried about losing my job since that date will almost hit my one year. She suggested that I apply for the Family Medical Leave Act to protect my benefits. I wasn't sure what that was about, I looked it up online and couldn't find anything to apply for. If anyone has any information about it I would be much obliged.

In other news, I've been feeling pretty crappy lately. I'm back to the limbo that I was in before: wondering if the treatments will ever work, stuck between appointments, worried about my future, trapped at home, isolated from human contact. I look and feel like crap too. At the very least, I'm not caught up in horrible side effects from the medications.

My next appointment with the neurologist is next Thursday. It's a follow up to the botox treatments so we'll see what she says.

disabled

Feeling the need to be independent from everyone else right now, I drove myself to my doctor's appointment 30 minutes away in San Jose. The drive was extremely difficult, I almost got into an accident several times as I had episodes of the movements while the rain came down in heavy waves. Even grasping the steering wheel with 2 hands, I could barely keep my own body in control let alone the vehicle.

I've been so caught up in proving to myself that I can get better, assuming that this thing will act like a cold and slowly improve, denying that the worst parts of the dystonia came and went on it's own regard like a predator. I've been trying to pretend I could someday live the same life that I was accustomed to, that I could somehow bypass my disease and at least pick up a few of the things I've let go.

It was for the first time struggling on the road feeling helpless and afraid of the world when I finally felt like I was truly disabled.

I want to work

Some people think of being on disability as some kind of joke... like if you can leech off the government then why not? Do it as long as you can. If you can somehow not have to work then don't for as long as you can.

Being on disability is not what you might assume. I want to work, I want to contribute, I want to keep myself busy. And there's always the worry that someday the disability checks will stop coming and that, even if you're willing, you couldn't work to save your life.

I feel insecure being in my twenties that I'm too young to get the social benefits of retirement. I'm willing to work my own way but my condition makes it extremely difficult to function. It's almost as if being in my twenties is a drawback to the disability system.

not ready yet

I think I overdid it this weekend. I tried to resume normal life by resuming the things that I like to do, hang out with my friends and go to rehearsals. But it was too much and the dystonia was hard to control. It was hard to enjoy myself.

I'm just not ready to get back to life yet.

disease

I'm a member of a few dystonia support groups on Yahoo Groups where people that have the condition share their stories and issues and what not. I've noticed several users call dystonia a disease. This started to offend me since I normally call it a condition but then I looked it up on dictionary.com.

A pathological condition of a body part, an organ, or a system resulting from various causes, such as infection, genetic defect, or environmental stress, and characterized by an identifiable group of signs or symptoms.

It's all in the verbiage I guess. Part of me wants to wear it like a badge on my sleeve, "I have a condition" and the other part of me just wants to fight it and get back to normal already. I had an aunt on Saturday suggest that I get those disability placards for the car. I wanted to yell at her that I'm not disabled, but it's true that I can't drive.

I called the Parkinson's Institute on Wednesday, my company is asking to submit a new disability certification since I've been rediagnosed with dystonia. At the very least, this place doesn't charge for it like my original doctor did.

2 weeks

Today marks 2 weeks since I've gotten the botulinum toxin treatment. I guess this is as good as it gets for now.

Progress:

• My head is no longer stuck in dystonia to the left side


• There is less pain


• I am no longer choking when I eat


• I can use a computer again


• I can read again


• I can brush my own teeth and shave again


• I can walk without stumbling


• side effects: my mood is better, I'm able to sleep again, my appetite has come back

Regrets:

• I am still prone to sudden dystonic posturing
  


• It is still difficult to drive


• It is still difficult to use a camera


• It is still difficult to look someone in the eye.


• I am still unable to go back to work, speak to people in public

...My bosses replied to my email the standard "hope you feel better" responses. I think I've lost them completely.

emailing my employer

Hi Michele and Jack,

I am unable to log into the network to access email again, I think my password expired. If you have any questions please feel free to call me.

I know that a lot of people have probably been asking questions as to where I've been, so please feel free to share updates on my status as explanation.

My appointment with the Parkinson's Institute was bumped up and I was able to see a movement disorder specialist sooner than later. I was diagnosed with dystonia, a neurological disorder in the same family as Parkinson's disease. In dystonia, the brain causes involuntary muscle contractions similar to the shaking found in Parkinsons. My particular case of dystonia is called cervical dystonia, in reference to the uncontrolled movements in my neck. About a month ago I was unable to walk and found it difficult to feed myself due to these movements.

There is no known cause or cure for dystonia, but the doctors believe they can provide treatment to get me functioning again. Two weeks ago I underwent a procedure called chemodenervation in which botulinum toxin is used to shut down the activated nerves. I am still seeing my doctor weekly and am currently taking Parkinson's related medications. I've shown some improvement since and am now able to use a computer again but still don't find it safe to drive and have problems writing. I spoke with my doctor yesterday and he is confident that through a combination of the chemodenervation and medications I will be close to 100% again. I apologize that the process in finding the right diagnosis and dosages has taken so long.

Again, thank you for being patient with me.

Thanks,

RJ


http://www.dystonia-foundation.org/