answering questions

I sent a long email to most of my friends and family on my status, on my current trials, and what was on my mind last night. I figured Why go through this alone?

Anyway, a good (yet distant) friend replied. He was a new addition to my distribution list and didn't know much about what I was going through.

Here's was his reply:

hey dude

thanks for considering me good enough to update like this. you're making me think that maybe i shouldn't push myself or impose my artsy crap on or ask trivial things of other people because its all founded in a type of self-centric mind. or maybe one might say i should take advantage of what i have and run with it. i remember you always saying to take advantage of the student life/youth, but still. i know you're coping, or at least trying, but i wanted to give you my hope as well. i'd like to think you will move on, regardless of what happens, but if you meant move on with a level of finality to this stage than i see the precariousness..

do you care/prefer/dislike people asking about things in detail? you haven't been annoyed before, but I feel more sensitive about it, now that i know more, and especially with this list of updates. though, the fact that you're telling the story should say something. do you mind if i ask you about the details of what you just wrote? as in, botulinum as in botulism? i didn't know you were intensifying, but then again i haven't caught you recently to ask.

i forget but.. what was the first sign of illness last year? was it sudden? does it normally happen suddenly? or are there symptoms that eventually escalate etc?

what is haldol meant for? is it necessarily beneficial at all to go stronger? i'll assume that this is at some point experimental too, as dystonia is unique?

yeah, one thing i was going to ask is how you were able to afford treatment thus far. was it covered under insurance or were there other procedures you had to go through? it sounds like SSDI will be time consuming because its federal level. do you have someone with you or watching you or are you pretty much self-sufficient right now?

how long did it take you to write the email? :)

hope you're well, hit me up.

Here was my reply:

Hey Man,

Don't worry about asking questions. It makes me feel like I have control if I can answer them.

- Appreciate your life, your freedom, and your health. Spend time with people that make you happy. And share what you love with others. Experience as much as you can and pursue your interests (even trivial ones) with as much passion and love as you can. I used to think that I was wasting money and time on my stupid little hobbies and was making poor choices because I chose interest over benefits. It isn't until now that I've come to be thankful that I was able to enjoy every single moment playing music, taking photographs, dancing, teaching, working in analytics, advertising, teaching, retail, just talking and getting to know people because most of these things are now limited to me. If this had happened and I had spent most of my life doing things that weren't making me happy, then I would have a lot of regret.
- My condition started gradually in August, came to the point where I couldn't function in October and continues to evolve to this day. When it started, I thought I was just under stress and started to shut down but basically I started to notice that my body was doing things that I wasn't telling it to do. This involves twitching, shaking, spasming, and posturing uncontrollably for long periods of time.
- Botulinum toxin is more commonly known as botox which is more known for it's cosmetic treatments. It first was designed for people with movement disorders like parkinsons and dystonias. It basically stuns muscles and nerves so that they can't function anymore. Botox is a treatment, but not a cure, to those with movement disorders.
- Haldol effects dopamine levels in the brain. Dopamine is a chemical used by the brain to regulate movement. Those with movement disorders like Parkinsons and Dystonia are thought to have a problem receiving dopamine. Haldol is actually an older drug that isn't used so much anymore because it effects other chemicals in the brain besides dopamine and can be quite dangerous.
- I've learned that most drugs are experimental in terms of treatment... especially because they have different effects in different people.
- I went on disability from my job in October, they are required by law to keep my position open for me for about a year before they can claim hardship and let me go. This was how I was able to keep my insurance. I have since been getting paid by the state of California on disability, which I use to pay for my insurance. Unfortunately, the hospital I go to (The Parkinson's Institute) is out of network for my insurance, so it is only partially covered. The full cost of a visit to my doctor is $300 a session. The Botox is a drug and is partially covered by my insurance.
- As far as all of the research I've done on SSDI is that it's a nightmare. That's why I have to seek help from a counselor (and eventually a lawyer) to get through it.
- My parents have been putting up with me since this all began. There was a while when I couldn't do anything, let alone use a computer, swallow my food, wash my own face because it was so bad. These days, I can drive (sort of, with a neck brace) and get out to the store. I rarely venture out, as my condition is easily noticeable and uncomfortable.
- That email took me about an hour. As you've noticed, I used to send them once a month (I send an email to my bosses about once a month) but I haven't had a lot of positive news lately. I've decided to share as much as I can, sometimes I feel like I have to prove that this condition has really affected me.

here's a 4 minute video on cervical dystonia
http://www.spasmodictorticollis.org/video/VNR.mov

As you can imagine, I don't get a lot of human contact... and occasionally a friend will call or email or IM me and ask me how I'm doing. That question is always hard to answer because I want to give a positive response, like "I'm doing better" or "I'm doing good" when sometimes I'm doing really shitty and especially when I haven't had a good day in a long time. I've found that being "sick" or having a "disease" is a conversation killer... when someone finds out that you're going through something or notices that you're not altogether healthy they tend to shut down, become speechless, and look sad. That is why I prefer not to see most of my friends these days, I don't like those awkward, sad moments.

Hope that answers some of your questions. Feel free to ask me more, or hit me up as usual.

Today was a better day than yesterday, but it was a difficult day.

-RJ