the body requires maintenance

I have a check up tomorrow. It's been a good 2 months since things started to cascade again. I'm happy to report that baclofen has seemed to have tamed the rapid return/onsent of dystonia. It took awhile and some nasty side effects including mood swings, lethargy, and anxiety but that passed after a week or so. I'll have a symptom occasionally and will feel off if I forget to take it but otherwise it seems to be working.

A former colleague messaged me regarding my recent posts and shared the history of her own malady. She's a few years older than I and spent a much longer time wondering about a seemingly unexplainable condition that she only recently found an answer for, Ehlers-Danlos syndrome. The condition has been known to be treated by DBS AND Botox injection.. so she asked me about it. The body will permanently start to tolerate the effects of Botox the more you use it so it has to be used sparingly or else it will no longer have effect.

Staying on Schedule

There were a few days after going back on Baclofen where my symptoms went away entirely. Incredible that it dropped off without me not realizing it. Definitely a great sign. I feel better about it now than when I last posted, mainly because the rapid increase in symptoms mirrored my first onset of dystonia. That time, it took me nearly 2 years to function again.

I'm terrible at taking vitamins, antihistamines, anything regularly. When I do remember, it's at a different hour of the day, sometimes the end of the work day.

I've been a little bit out of whack lately: waking up in the middle of the night, mood swings, asthma attacks, some feeling of anxiety on trivial things. I thought it was something I was eating but today I realized that it could be the drugs and looked it up. The drugs have been found to treat alcoholism and tend to have withdrawal symptoms.. sooo, I need to be better about not forgetting.

Thanks to those of you who've sent me private notes or looked me in the eye to ask me about what's going on. I don't want it to seem like I'm crying for help, or asking for credit. I feel like I've been blessed to not have something terminal and I've been given chances to live and operate without restriction again. There are people less fortunate (some with dystonia) than I. Talking about it, writing about it, explaining it makes me feel like I have a degree of control and sharing makes it seem less like I was alone. This time around, I waited a week before telling my new boss. I think overall, I'm just getting more comfortable about it.

Hello!

I'm here. It's January, 2011. So much has changed. I'm 32.

Grandmother passed away over a year ago. Kevan has a little sister. I have a job, a love, my dog, and a life. I am well.

It is too simple to assume that once you are ill and well again, that it ever completely leaves you back the way before it came. And these past few weeks I've been reminded of those few weeks in the beginning where I descended quickly from knowing myself as working man into a dependent cripple.

I feel like things are sliding quickly again. It is, or rather I am, moving again. The instinct is to tell my body, "wait! I'm not ready yet." But no one ever said you could control anything by just your words.

Since I started working again, I have had to see a variety of different urgent care doctors, optometrists, physical therapists for a variety of regular ailments. When they ask me to list known conditions, I always explain the disease. A few of them nod and tell me, "oh yes, I know what that is". And when they do, I don't look for another specialist again.

Before grandmother passed away from Alzheimer's disease the doctors also diagnosed her with Parkinson's disease.

Awhile ago, my sister told me that she saw a man in the grocery store. He was struggling to pull a carton of milk off the shelf. He was twisted. My sister walked up to him, reached up and handed him the carton and said "my brother has dystonia". He smiled and they parted ways. How that made me feel happy that someone was able to tell him "I know what you're going through."

When I first understood what it was and read about treatments, my heart jumped at the thought of undergoing brain surgery. I thought it was my last and final bastion of hope and wanted to skip all of the drug and physical therapy and have them disable the part of my malfunctioning brain. I'm not there anymore, I'm a little bit wiser, but I remember when all I could think of was surgery or death.

I have an appointment tomorrow. Fear returns, scenarios play, "goodbye letters" already spell themselves out as I sit here by myself. It's not that bad right now but moving quickly. Live your life, thank your God, give. Celebrate every breath of freedom.

• Embattled Survivors at the Piano: Two of America's finest pianists recount how hand injuries plagued their performance and altered their careers
• Pioneering surgery helps boy, 4, smile again: A four-year-old boy with a severe muscle control disability has been given the ability to smile again thanks to pioneering brain surgery.
• iPhone app gives a voice to the voiceless
• A life resumed: Surgery rids woman of longtime tremors
• Dancing with Dystonia
• Dystonia-parkinsonism: The mean age at onset is approximately 35 years, with 14 years the youngest reported age at onset.
• Lubag: X-linked dystonia-parkinsonism was first recognised in the Philippines and among the Panay Island families with the disorder. It is called by the Illonggo name “Lubag.” This name refers to when the twisting movements (dystonia) are intermittent, “wa’eg” when twisting postures are sustained, or “sud-sud” (an onomatopoetic term denoting the sound of sandal slapping the pavement) when the gait is shuffling (a feature of parkinsonism).
• Lubag Disease: This same source noted a prevalence of 0.36/100,000 basing on 268 survivors in a population of 74 million. This included a prevalence data for the entire island of Panay with the rate of 4.77/100,000. Among the five provinces in this island, Capiz has the highest prevalence at 21.94 cases/100,000. Lubag is said to be an endemic disease in Panay Island, especially in Capiz.21
• For Blake.
  

uncertainty and one of it's many demons.

Hello world.

It has been awhile hasn't it? Approximately 5 years ago it quickly began and 2 years became an eternity and then slowly but surely I regained semblance of a livable life. According to whatever can be trusted online 5 years is what I've been informed as the typical onset with symptoms progressing, then stabilizing, within a five-year period.

In October of this year, I noticed dystonic symptoms slowly reappear. First in random instances in my hand or in my neck and then more and more as the days wore on. It has come to the point where the subconscious trick has reemerged where I lie to myself that fighting it or grabbing it with my free hand might somehow stop it from happening. It's almost as if it never went away, because it really exhibits itself exactly the same as it did before. I really can't tell you what it feels like, because I really can't will it or feel it happening. I just know it's happening. It's like a out of body experience, except I'm still in my own body.

Why, after 3 healthy years, is this happening now? I think perhaps it's because somehow I became vain and proud and, in many ways, indestructable again and the world and universe had to put me in place. How can I be strong if I'm not allowed to be weak sometimes?

In many conversations with my friends, family, and coworkers, there's an unsettling feeling of uncertainty in the world. And I can't forget that there has been a great deal of things to deal with, things that I might easily forget or cruise over that are really affecting me. There must be some kind of repurcussion from subjecting my body, mind, and soul to stress without relief. Yes, I do this to myself (with the help of the world around me).

It's time to slow down and seperate myself from the things that ail me.

Woman Disabled by Flu Shot Reaction

Woman Disabled by Flu Shot Reaction

Updated: Wednesday, 14 Oct 2009, 5:29 PM EDT
Published : Tuesday, 13 Oct 2009, 11:27 PM EDT

• Claudia Coffey
• By CLAUDIA COFFEY/myfoxdc

WASHINGTON, D.C. - An Ashburn, Virginia woman is in the fight of her life after suffering a very rare side effect to the seasonal flu shot.

The vast majority of doctors say flu shots are safe. In this case, the FDA says they found nothing wrong with this particular batch, but sometimes there are complications.

That's apparently what happened to Desiree Jennings, and now her life will never be the same.

At 26 years old, Desiree Jennings was the picture of health. She's a Washington Redskins cheerleader and an avid runner. Her life changed forever on August 23 when she says she got a seasonal flu shot at a local grocery store.

"I was training for a half marathon then," said Jennings, crying. "It just all went so fast."

Ten days after receiving the shot, she came down with the flu. After that, her health spiraled downwards. She started passing out and had to be hospitalized twice.

"We went to an urgent care place and they wouldn't even let her get out of my truck because she was seizing in the back so bad, so they called an ambulance immediately," says her husband, Brendan Jennings.

Doctors at Fairfax Inova and Johns Hopkins diagnosed her with a rare neurological disorder called dystonia. They think it was caused by a severe reaction to the flu shot.

Desiree now has difficulty speaking, walking, and even eating. During an interview with FOX 5, she had several seizures. The effects are irreversible.

"The symptoms will get worse if I use my voice or walk when the brain signals are misfiring," says Jennings.

Desiree reported her health problems to the Food and Drug Administration (FDA) thinking there might have been something wrong with her vaccine. We also contacted the FDA and we were told they found no problems with the particular lot of flu vaccines that Desiree received, and the agency has not received any other reports of adverse effects from this lot.

Health experts stress that overall, extreme side effects are rare.

"The flu shot is safe for the majority of the public, and as I said before, your heart goes out to someone that experiences this sort of thing-- thinking that they are doing something great for their wellness and their general health, but it does happen in extremely rare cases," says Rachel Lynch with Fairfax Inove Health System.

For Desiree, she just happened to be one of those rare cases.

"I just don't want this to happen to anyone else," says Jennings.

Desiree and her husband plan to visit the Mayo Clinic in Arizona in November. They're hoping to get more answers about this disease and how they live with it.

Desiree has received flu shots before in 2007 and 2008.

A reminder that I am human

Last Saturday we were performing at an event like usual. We prepped ourselves and got into costume. We did a few runs with the performers. The stage manager prepped us before we went on.

The MC called us up and we set up chairs. Then we set up microphones. And then we situated ourselves and our instruments. During all of this the MC had me explain a little bit about the performance and the instruments. It was all fine and relaxed, and I remarked to myself that I haven't actually seen our performances in a long time (because I've been caught up in other life things) and how we looked great and that the actual performance was what everything is all about.

And it was really a great time to enjoy everything.

Then, midway through the first set, a set that I have performed hundreds maybe thousands of times before, something started happening that has never happened before. My forefinger started to curl, and then the next finger followed suit, and then before I knew it my whole hand became contorted. There was no pain, not really, just a twisting that I knew not to be a cramp as I get those occasionally. It was something else entirely. And in some kind of weird clarity I knew instantly what the feeling was and that it wasn't right.

It was dystonia, rearing it's ugly head after a year and a half of freedom, manifesting itself in a completely different part of my body. I had read in various journals that dystonia moves into different parts of the body, in some instance spreading like a cancer and in others migrating like a parasite.

I fought it. In some strange kind of instinct I refused to let it take me down where I was needed most. I played through it, even used the twisting a little bit. And, like the torticollis before, I failed in many ways. There is no reward in victory, just acceptance and struggle.

I went home that night, reeling from a returned ghost and fear for the future. I was almost out of the dark. My hand felt ethereal and stiff for the rest of the night and the next day, almost as if it wasn't a part of my body but some kind of loose replacement part.

I called the hospital on Monday. Chapter 3, I am ready for you.

A letter to Linda

Hi Linda,

I am very sorry to hear about your struggle. I have been very fortunate with dystonia, with some very difficult times where I was completely incapacitated. I can't speak much to what you should do about the system of hospitals and doctors... but I think I know a little bit about what your son is going through.

It sounds like your son has more than torticollis ("neck" dystonia). If he is experiencing abnormal movement in his hands then he may have generalized dystonia.

I am 29 and started having dystonic symptoms at 27. Within a month I had to stop working entirely and was severely disabled for the better part of 2 years.

The process of living with a disability, in going through the hurdles of the medical system and filing for benefits is such a tedious one, especially when on a daily basis you have to deal with the pain and lack of control over your body. Those are 2 different battles that one must endure every second and every minute of the day, 7 days a week with little or no breaks. Emotionally it is exhausting and for the most part being tired about your pain and about life becomes numbing. Tack on the effects of some neurological drug, and the human being becomes less human and more a machine.

I am sure you already have experienced some of this and I know that your son is lucky to have a caring family. I know too that it must be exhausting for you. Thank you for taking care of him.

I know that most of my psychological pain had more to do with my own need for independence than anything else. I hated feeling like such a dependent drain on everyone and tried not to ask for much. I suspect that your son is going through the same thing. He doesn't want to be an additional drain for you and your daughter, but he does not want to tell you that.

In terms of dystonia, I know that the relatively lack of knowledge to the public and the system was additionally discouraging to me. In all honesty I didn't think that I would ever get better, mainly because there was no information or specialists that focused on helping people. Yes, there were specialist neurologists and centers and the DMRF. But I could not see any type of relief or real help, at least not in my lifetime. At some point I decided that there was no point in fighting a battle already lost. My life was already over.

Your son is probably exhausted from feeling discouraged and battling his condition. He needs you as his advocate, the clarity of mind to speak and think for him when he cannot. If he has no hope then you must have hope for him and relieve him of the pressure of having to have hope. I know that is a lot to ask of you and your family. If needed, I recommend seeing a counselor at an independent living center as well as getting counseling or therapy for yourself or your daughter.

I have cc'd my sister, who at many times during my worst moments was clear for me when I could not be.

I wish you all the best and pray for your sons recovery.

thanks,

RJ

Gravy

Gravy
by raymond carver

No other word will do. For that's what it was.

Gravy.

Gravy, these past ten years.
Alive, sober, working, loving, and being loved by a good woman.
Eleven years ago he was told he had six months to live at the rate he was going.
And he was going nowhere but down.
So he changed his ways somehow.
He quit drinking! And the rest?

After that it was all gravy, every minute of it, up to and including when he was told about,
well, some things that were breaking down and building up inside his head.
"Don't weep for me," he said to his friends.
"I'm a lucky man. I've had ten years longer than I or anyone expected. Pure Gravy. And don't forget it."

incredible things happen

I did something last Monday that I used to think impossible.

I got my haircut by a barber.

It's not that I didn't get my haircut for that 1.5 years of being incredibly sick and disabled, just that I had to kind of force myself to cut my own hair, dystonic movement and all.

On Memorial Day, it was a nice and beautiful day and I thought I deserved to take care of myself a little bit. It was very motivating actually, to sit in that chair and start off slightly worried about it, wondering if the barber noticed, and then minute after minute watch the process happen without pause, and then finally feeling the barber's brush dust off the hair off my shoulders. It had been 2 years.

Yes of course, it was there, reminding me that I wasn't completely healed and probably would never be. Not so much a tic or a shaking storm but more like a tightening muscle, that unintentional pull that only people with movement disorders can feel. For the most part though, I was able to keep it under wraps and found that a person with cervical dystonia could, in fact, sit down long enough for a haircut.

Just need to tackle the stigma of the disease and start working again.. and then soon I will be back on my way.

simple things turn into big challenges

I recently went through my old posts. What a journey it has been.

When I started this journal, it was such a struggle to type. In this digital age, most of you probably have taken lessons and now type on a daily basis. I myself learned typing in high school, and even taught typing in high school! Before the dystonia, my WPM was 88 and at a recent typing excercise, I've found that I'm up to 94 words per minute.

Now, if you could imagine (knowing that you are part of this wonderful typing world) being in such an unpredictable state of movement where typing a single sentence took 30 minutes, where your focus constantly shifted from your thoughts to the screen to your hands to frustration, where the act of typing was as difficult as climbing a mountain...

that is what dystonia is like.