Why I Became an Advocate of Awareness

I frequently wonder why I spend time talking about dystonia. It no longer runs my life. I am not still searching for answers. I have, for the most part accepted my diagnosis or lack of one. … but I still feel the need to talk about dystonia - rather than any other condition. Why is that?

Dystonia wasn’t the only ‘mystery diagnosis’ I’ve dealt with in my life. To be honest, it seems like there was always something going on with me. I spent nearly half of my high school life in physical therapy recovering from one thing or another. Yet, I was still an active, healthy person- or at least I thought I was. 

I appear so healthy at times; that it’s hard for people that know me to believe there is anything wrong with me. Every since my hand started spasm-ing as a pre-teen, I’ve been told it was all in my head. 

I suppose I took exception to that. Mostly, because it was precisely that mindset that landed me on crutches. It was another condition, one which my family doctor prescribed a “Tylenol and some ice” as a treatment for, that led to years of debilitation. 

At 14 years old, I lost the full use of my feet- for almost a year. All due to improper treatment of a repetitive sports injury. Three years of physical therapy and lots of rest, and I gained the majority of function in my feet- but as a Freshman in high school I was convinced I would never dance at my Prom.

I did dance, but I was scarred emotionally and physically. 

Ten years later, after enjoying a relatively normal life, I was once again not able to use my feet, but for a different reason. My right foot turned inward and refused to let me step down.  Once again, the doctors had no answers. Once again, they told me it was in my head. Then one doctor paid attention – and called it dystonia. 

As I learned more about dystonia,  I learned that my experience was not unique. I found camaraderie in the millions of sufferers who struggled with their muscles yet had no answers. I found others who had been told ‘ice and Tylenol’ or were told to take some muscle relaxants and go away.  I met doctors who realized that stress was not the cure-all diagnosis for conditions they didn’t understand. 

To me, dystonia awareness is a movement of people who demand accountability from the medical profession. These are the patients who have been repeatedly silenced, yet cannot hide, because their symptoms are so visible.  An advocate of dystonia awareness is someone who believes there should be answers- even when the solution is not easy.  A dystonia advocate believes that people should not only be entitled to life, they should be entitled to a good quality of life. 

No one deserves to live in pain, disability or embarrassment just because people refuse to search for answers.  We can’t ignore the problem or pretend it doesn’t exist. It’s time we focus on understanding the many conditions that attack humanity and do everything we can to fight back. 

That is what I stand for.

Dear Diary: If There’s No Cure for Dystonia, How Do I Explain…

There were a few reasons why I stopped blogging about dystonia, but one reason was because I couldn’t explain how I was able to relieve my symptoms. After years of research and plenty of doctor visits, I knew that dystonia was an incurable disorder that is only maintained by medications. I also knew that it is defined by sustained muscle contractions that remain despite input from the brain. 

How then did I explain my symptoms, which at that time progressed from permanent dystonic state to the occasional flare up? I couldn’t. 

So for three years, I avoided the questions of how I was doing, so that I would not have to tell people the truth: I was doing well. It’s not that I didn’t want them to know - it’s more because I did not have an answer for how I did it. 

So now, I am reconsidering that decision. Instead of hiding my experience from those seeking information, I am going to share it. There’s just one caveat. I still do not know whether my drastic decline in symptoms was caused by my actions, a buildup of all the medicines I had taken, a change environment, or even just luck. 

So, consider my experience with a grain of sand. 

My hope is that you may find some relief in what I did, or possibly give insight about why it might have worked. 

I will be sticky posting this information as a page, so that it easy to find.

Click to view how I treated my dystonia.

Dear Diary: Now what ?

When I started looking online for other dystonia stories, I found the same theme amongst people who had Deep Brain Stimulation. As soon as they are able to they go and run a marathon...

What is it about dystonia that makes you want to do something incredibly athletic just as soon as your 'better'?

Perhaps (especially in generalized forms of it) there is such indescribable joy for once again having control of your muscles that you immediately want to test your personal limits.

There's also the possibility that dystonia spasms and contortions have left the un-dystonic muscles weak from not being used, and the best way to fix that problem is through a good old fashioned work out.


All of these things I didnt used to think about, but now I am facing what I imagine post DBS patients go through. The overwhelming urge to work out.

Even though I had some success with botox injections, I never went more than 3 weeks without spasms. The other six weeks were just weeks that took the edge off. With my current treatment it has now been three months without spasms or limp.

As a result some of the muscles in my legs, muscles that I suspect were barely used before, are suddenly growing in size.

Driving is no longer painful

Heels do not bother me one bit.

Walking endless hours no longer bring on leg fatigue.

I feel like I could run a marathon.

Im not however =).

I am going to join a gym and workout

Dear Diary: I dont miss you, Dystonia

I started a new medication in 2010. A little powerful pill called Tetrabenazine and it apparently is my wonder drug. Ive completed my six week trial, and I am walking straight, standing tall, and touching both shoulders with my chin... (not just the right one)

After over a year of dealing with the fear of waking up and not being able to straighten, I found myself doing things this month that I havent done in years. I call it my March Madness. My family calls it scary.

I was off to a slow start with my new medication. I have to say, I dont really remember much of February. There were eating spells, sleeping spells, dizzy spells, severe writers block and the infamous 3 days where I couldnt sleep at all. There were not, however, any dystonia spells.

After one week of the medication I gave up on it.

But after finally speaking with my neurologist about my side effects she encouraged me to stay on it a little longer.

Im glad I did.

I still have very difficult mornings, due to the side effects, but I am now back to sleeping 9 hours of sleep and living full, non or low dystonic days. ..

The benzos and or alcohol, has been downgraded to aleve and water.

Limping and cane walking has been traded in for strutting in 4 inch heels and dancing.

Tweeting my friends has been upgraded to road trips and parties with my friends.

All day sleeping has been exchanged for part time promoting.

Although this is not a cure, rather a maintenance medication, that may or may not work a year from now... I am glad to say I dont miss my dystonia.

but I do plan to live it up while its gone.

Dear Diary: Is this Brain disorder affecting my brain?

I'm going to be perfectly frank right now and say the I am fed up.

In the past 9 months that I have been disabled by my dystonia I have met many wonderful people with dystonia. By meet I dont mean the number of people who stumbled on this blog or follow me on twitter, I mean people that I have actually held a conversation with, or read or listened to what they had to say. Some have become good friends, others have just become new additions to my vocabulary, but nonetheless they have shaped my experiences.

What I have learned and experienced is an overwhelming negativity associated with many of the people I have met, watched or read. It has gotten to a point where it actually hurts my heart. For the last couple of months I have been struggling to understand why this is in both my dystonia comrads and myself.

I try not to make this blog too technical, because I am not a health practitioner, but let me break down the definition of dystonia. Dystonia is a disorder of the basal ganglia. It affects movement. It by current definition does not affect personality or cognition. Yet, If you were to lock yourself in a room with 100 people with dystonia the majority of them will either be angry, depressed, or self concious.

Why is this?

The dystonia medical research foundation states that chronic illness frequently affects psychological health:

http://www.dystonia-foundation.org/pages/emotional_and_psychological_health/37.php

Is that why we are in love with Micheal J Fox and Lance Armstrong.. because they are immune to the chronic illness blues?

I am not so quick to write off stress as a reason for the sour grapes many seemed to have ingested.

Could the neurons be attacking other brain cells like they attack cognition in Parkinsons? Could some forms of dystonia just naturally make you mean?
**********************

I know one thing: Dystonia has made me more outspoken, more aware of the day to day, and more likely to take a siesta or two. When I find myself sucking on the dystonia sour grapes.. well I do like I do with my daughter..

I give my brain a time out.

Dear Diary: Does my Dystonia frighten you ?

In the past couple of months Ive started to notice a few things... the most important being that:

My talking about dystonia makes people uncomfortable. I wonder why that is. Dystonia is not contagious. There are no dystonia cooties. Thinking about my dystonia will not make you develop dystonia.. unless you have developed that superpower.. then I'd suggest staying away from hospitals!

I attempt to make my dystonia a lighthearted thing. I dont start crying when talking about dystonia.. I actually am laughing about it most of the time.

I remember when I was first diagnosed I watched dystonia videos and read all that I could to learn more. I wanted to CRY!

Damn! Dystonia is HORRIBLE. So horrible.. that Im just gonna pretend that I dont have it! yep~ thats what I did for 2 years actually. Worked well, until I woke up one day and couldnt stand up.

I now know that dystonia is not the end of the world. I can survive this. Yes its pretty bad.. but it wont kill me, although it does make me VERY poor and THAT may kill me :P

So if my dystonia scares you- Im truly sorry. Im just trying to shed a positive light on a truly horrible disorder so that those new to it wont feel the despair I felt my first few years of diagnosis.

DEAR DIARY: 3 vials of toxin to the hip.. yeah I did that

Today I bit the bullet and tried the BOTOX. Yes, I know BOTOX isnt that big of a deal.. People get it all time.. Case in point: Vanessa Williams.

Especially in my line of work cosmetic surgery is no longer taboo and is as commonplace as good concealer.

--but my BOTOX is medical--

I have always been afraid of BOTOX. So afraid that when I was first prescribed it in 2006 for my writers cramp, I walked away from the neurologist screaming:

"Never would you inject a toxin in me. I dont need my stupid right hand anyway!"

But here it is three years later and I just had 3 vials -- 3 VIALS -- injected into the muscles supporting my hip to treat a portion of my hemi generalized torsin dystonia, because I actually do need my right hip.

*****



My doctor is so brutally honest:

"Will this work?" I ask: "50% chance, the glutes are a large muscle group.. thank goodness you are small." She replied with a smile.

Gotta love honesty.

So for the next 48 hours I am on doctors orders to not go upside down.. (toxin will flow to muscles that dont need it) and go to the ER and page her if I develop a fever because 3 Vials could possibly have permanent irreversible damage.

No worries.


and I get to do it all over again in 3 months.

DEAR DIARY: the great caffeine expedition

I have always had a love hate relationship with caffeine. I love drinking it and hate not having it... but very early on in my life I realized that our relationship was not healthy. So, at 14 years old I said goodbye to caffeine, and I enjoyed years of productivity and in retrospect very few hand dystonia problems.

I had effectively made a lifestyle change that had unknowingly helped my dystonia. I even survived living in Starbucks land.. ordering steamed milk and confusing the baristas..

I however was not prepared for the Southern family get together. The ones that include hearty food, deserts, warm weather, big smiles, and a gallon of sun brewed sweet iced tea..

*my hands are quivering thinking about it :P

In my life I have learned to ask: "Is the tea decaf?" Not because I thought it would have anything to do with my dystonia, but because I become jumpy and suffer from insomnia from one can of coca-cola. As usual I asked, but in all the excitement misheard the answer. It was not until my hand began to spasm and weaken and my right side seem to scream from the nerves themselves that I sensed something was wrong. I dropped my fork and nonchalantly switched to eating with the left.

"Jenn, are you okay. You full?"

I was sitting on my right hand, and rubbing my stomach with my left, while staring into space with glossed over eyes.

"No..." I blankly replied.

This was 30 oz of sun tea later of course.

The box confirmed what I already knew. 40mg per serving. (and being sun-brewed there is no telling how many tea bags I actually got)

I ran for the door like i had just been poisoned.

OMG OMG OMG OMG

begin panic attack.

this was the most caffeine I had had since 13

OMG OMG OMG

my body was shaking. I tried to meditate but I couldnt calm down. The pain was shooting up the right side of my body, and my heart was racing. I felt so helpless, like I had lost control of my nerves. I wanted to scream or run...

but I settled on crying and jumping on a trampoline.

There was so much energy racing through me. With every jump my heart sped up and I continued hoping to metabolize the 'poison' out of my system. After 10 minutes of aerobic jumping, I limped off the trampoline and braced myself for a few minutes until my heartbeat slowed.

"Jenn, you ok? You need some water?"

"No.... I need a shot."

2 oz of Hennessy followed by 1mg of klonopin (24 hours later) with a total of 20 hours of sleep= me back to normal after 48 hours.

DEAR DIARY: I have dystonia therefore Im NOT an alcoholic

One of the hardest things for me to deal with concerning my dystonia is telling people that alcohol helps me feel better. I always get the strangest looks or laughs when I say it.. Look at me- young and a little bit crazy, people assume that I am using the illness as an excuse to get tipsy..

Note: you never need an excuse to get tipsy

I however unlike most twenty somethings.. do not like to drink. I have seen alcoholism affect too many people in my life, and I have watched friends suffer through hangovers. I'll pass thanks. I therefore am a social drinker.. Only drinking if everyone else around me is ... AND I only have two drinks at most..

But, (not yet verified by genetic testing) I have myoclonus dystonia... and the best treatment for that is Guess What? Alcohol.

So here I have a double edged sword. Keep a stock of my favorite liquors and self treat myself with a tasty Margarita every 2 hours, or take extremely addictive highly toxic Chlonazepam to so soothe my symptoms... decisions decisions

My fear is that if I start on the alcohol option, it will become a crutch for not only my dystonia, but also the stress that dystonia causes.

I will never drink a glass of wine every night to help me sleep.. its just a bad habit that I dont want to start.

So until there are better treatments I choose be dystonic. I mean at least the left side of my body still works fine.

but if you see me at a party.. I'll probably have a drink in my hand. :P

DEAR DIARY: but I am stretching

I would consider myself a physically active person. I did dance, gymnastics, and climbed trees as a kid. I did track, volleyball and cheerleading in high school. But somehow, between 18 and now, I have become a person that people assume is 'out of shape' simply because I lack normal range of motion.

That hardly seems fair.

Before my symptoms got really bad I became a huge fan of yoga. Although I was typically in there with arthritis patients, my yoga instructors would pull me aside and reccommend me for their geriatric classes. I was never offended by this or felt out of shape.. I just felt like I had some weird muscle tightness problem...

But my current physical therapy, which is actually reccommended for people with medical issues, is not as friendly.

No mater how many times I explain to them that I cannot lift my arm straight up.. I get:

"There's no can't! Just try harder!"

If I grimace in pain and suggest that turning my neck all the way to the left might be too much for me I get:

"Turning your neck is a normal movement..just go slower !"

As an adult I have watched my body progressively get tighter.. and I dont appreciate someone telling me I should just stretch slower....

(as if a combined 3 years of 3x a week physical therapy or yoga doesnt prove I know how to stretch.. yet my body continues to tighten?)

I know now that physical therapy for dystonia is not always reccommended, but I wanted to maintain the strength in the non dystonic side of my body since it is now working to compensate for the other half.

Maybe in the future, medical yoga will be added as a treatment for dystonia.

but I wont hold my breath.

DEAR DIARY: I survived January

Three Storms in one month! Can you believe it! Thats means 20% of January was spent at 50% capacity :P

I can actually tell a difference in the right side of my body now. Its weaker. I can only get through about a sink of dishes before I give up, or maybe 40 minutes of typing, before I take a break. I'm even getting tired holding my cell phone to my ear with my right hand while driving with my left. ..

Guess I'll be going handsfree.

I sent in my application to the National Institute of Health Dystonia study last week. My mom typed the letter for me, because I was in the midst of a dystonic storm.

I really hope that I dont lose my ability to type.. I already have my eyes set on the dragon Naturally Speaking Voice Recognition Software..

Just as soon as I get a new computer with enough bang to run it!

:P

DEAR DIARY: i'm so sick of this!

its one week from my last episode.. and once again... this time on a Wednesday night.. my hand felt tight. I had just cooked dinner. I made chicken and dumplings, a meal that requires a lot of stirring. While eating my yummy masterpiece it hit me.. extreme fatigue. I put my head on the table and did a mental inventory of what i needed to do before I could sleep.


I couldnt even take my tight jeans off. My daughter had to pull them of of me. I was just too tired....


So its been 24 hours, and luckily I am still walking normally. I can hide a lame hand.. years of this has taught me to be ambi-dextrous. But the constant dull aches from my finger tip to shoulder and the spontaneous spasms is getting old.


plus blogging with one hand takes a long time....

DEAR DIARY: The irony of it all..

Most models are happy about ending up on an advertisement for a large company... but I'm not most models :P

A few weeks ago a friend of mine sent me a message on facebook that he just saw me on a billboard in DC. .. upon further verification I could confirm that yes he did indeed see me on a billboard.. ironically enough for Medicaid.

This would have been less humorous if I wasnt currently on Medicaid due to the fact that I could no longer work due to my dystonia.. and had no income due to my dystonia... and needed Medicaid due to my dystonia....

When I took the picture a year ago for stock I never would have thought that it would end up promoting Medicaid...

ahh the dangers of stock photography :P

So now.. Im sort of a celebrity in DC promoting healthcare, yet I depend on the goodness of my state's taxpayers to pay for my medical bills.

There just has to be something WRONG with that picture!

..and dont get me started on my daughter's stock that ended up here: http://www.dom.com/

DEAR DIARY: Ring in the New Year

The first dystonic storm of 2009, started and ended strange. I almost think that this one was psychosomatic.

I was online looking up of all things.. 'dystonia' on a mini computer with a toggle stick (I think its called) I have had the computer for three months and spent 3-4 hours a day on it. Well that night, as I leisurely browsed the internet after a very busy day I felt a familiar tingle in my right hand.

Oh NO! I thought to myself.

I immediately stopped what I was doing and layed down. Maybe If I went to bed before it spread Id be fine.

Not so much luck with that. I woke up with my hand cramped into its familiar C shape. Mocking me with its limpness. To add further insult a spasmic feeling shot through my forearm.

CRAP!

I moved faster to drive the kids to school. I knew it was only going to be a mater of minutes before my whole arm was spasming and and I was exhausted.

I drive the kids to school, left handed, and immediately go home and nap. I was going to end this with sleep.

Ahh, but this one was persistent, I woke up with two arthritic fingers, a visually spasming right hand, a spasmic right forearm, sore and sensitive triceps, tight shoulders, a spasmic right foot, sore right hip, weak right knee, sensitive right thigh and a freezing right foot and hand.

*sigh*

I was just gonna have to wait this one out.

The next day was a weekend, and thankfully, my father who had seen this happen before was home to cook the kids dinner. I stayed awake long enough to eat and tuck the children in, then I once again went to sleep..Hey it wasnt like I could do anything else..It hurt to do anything... walk, sit up, use my right hand in any manner... and my right extremities were sooooo cold.

I stayed home all of day 2 alternating between sleeping and eating, but by day 3 I was fed up.

I went online.. keyword "stop a dystonic storm". I was considering a warm bath, (my hand was so cold) cup of caffeine, and some prescription muscle relaxant samples I had from a 2007 episode.

Then I got scared..what if they made it worse?

"THATs IT! I have a LIFE! I'm tired of you spasming - I want my hand back.. I know my brain is controlling this! QUIT IT!"

1 hour later my hand was warm again. I could move my fingers. I could stand up on my hip and straighten my knee. I could wiggle my right toes!

It was over!My first dystonic storm of 2009..

All 60 hours of it was over.