Spazmic Confessions: to help let go of Dystonia

UPDATE

2010-09-21T18:10:00.000-07:00

It has been a while since I've posted, and many of you have been wondering what Ive been up to. Honestly, not very much. Silence is a blessing when your life has been so crazy for a long time. But for my readers who are still out there here is where things stand with me and this blog:

I am currently not using any medications after I developed side effects to the tetrabenazine. The side effects were manageable with more medications, but I opted not to increase my medicine regiment.
I am using natural procedures to manage my symptoms such as diet and lots of rests
I am not as active in the dystonia community as I have been in the past, because I need to spend time with my family and provide a living income for myself

I do, however, miss blogging and providing the information that I did to the dystonia community and general public. Having said that I will do my best to keep this blog updated. I will continue to post on advocacy opportunities, dystonia in the news, and self help ideas. There may also still be some dear diary inserts but don't rely on those.. I may also be adding some reviews of items that may be relevant to my readership. I will be particularly careful as to which items I review because I do not want to dilute the usefulness of this blog.

Thanks everyone, and I hope to continue to have your attention =)

Dear Diary: Now what ?

2010-05-16T17:49:00.000-07:00

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

2010-03-15T11:05:00.000-07:00

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.

SELF HELP: Tap Away a NeuroMuscular Disorder... OK not Really

2009-12-14T02:15:00.000-08:00

EFT -- Emotional Freedom Technique

I'd call it an interesting cross between energy work, acupuncture and meditation. EFT practically claims to cure anyone of anything!

Here is an article on how EFT 'cured dystonia'

Man with cervical dystonia uses EFT to cure himself
(scroll down a little)

On the page, the letter says the man was misdiagnosed with dystonia, and was actually suffering from intense stress which was causing his neck to be stiff. The EFT cured his stress which brought full range of motion back to his neck..

hmmmmm.

Well, Im not going to delve into the Stress/Dystonia discussion but I will reference this webpage about the Role of Relaxation and Mind-Body Exercises in Dystonia Treatment

Im not calling EFT a cure, just another pain management option.....

Now deciding whether or not you have dystonia or just a bad case of stress should be left to the experts.

****************

Please remember:

#1 I am not a medical practitioner in any way.
#2 There is no cure for dystonia

and for goodness sake dont be silly and try any self help idea without consulting a doctor....

IN THE PRESS: Montel helps Alex become a cyborg

2009-12-10T12:17:00.000-08:00

Last Spring Montel Williams (I seem to be blogging about him a lot lately) worked with a dancer who was suddenly affected by dystonia. He brought her back to the Doctors in October and took her to some neurosurgeons specializing in movement disorders to discuss deep brain stimulation for dystonia

Watch a clip from the episode here

Wanna help her get back to dancing?

More about Alex and how to help

SELF HELP: Marijuana???

2009-12-09T20:22:00.000-08:00

Many have read the story of Montel Williams and his marijuana habit...

If not... here you go: Montel on TV some time ago talking about medical marijuana...

... but just to be clear... MS is not the same as dystonia! so why this post about it being a dystonia treatment?

Well because the US government agrees.

Statement from the National Institute of Health about marijuana and dystonia...

"Individual case studies have reported some benefit of smoked marijuana in treatment of dystonic states. Smoked marijuana or oral THC administrations for Parkinson's disease or Huntington's chorea have not been effective."
***LINK***

(and if you think 'high' dystonia patients sounds scary... talk to ones who take Anticholinergic Meds)

Now I wouldnt post a self help post that isnt actually do-able! Medical marijuana is legal in some states with a prescription.. generally speaking its the states on the left side of the country.

Below is a website with more information on legal requirements and obtaining a prescription:

Medical Marijuana Clinics

********************

So here is the important information to gather from this self help post:

Possession of Marijuana is illegal
Smoking marijuana is clinically proven to possibly reduce dystonia symptoms
A prescription for Medical Marijuana is available in some states.

Learn about Dystonia from the Dystonia Community: a Web Mag for All

2009-12-09T20:14:00.000-08:00

I cannot begin to praise this project started by a fellow dystonia sufferer enough.. and no, its not because I have contributed to it multiple times =)

Check Out Dystonia Living Magazine!

http://www.dystomag.com/

It is the brain child of a talented generalized dystonia patient, built on the stories of generalized patients from around the web. This monthly magazine offers stories, tips and links and is always looking for more contributors. Check it out and enjoy :P

Dear Diary: Is this Brain disorder affecting my brain?

2009-12-09T19:50:00.000-08:00

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 ?

2009-07-25T09:26:00.000-07:00

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.

Spotlight: Dystonia Medical Research Foundation

2009-07-25T08:00:00.000-07:00

Ive decided that I will take time to do a quick 'spotlight' on the many Dystonia non profits out there (that I can find) in no particular order under the advocacy portion of my blog... There are many different types of dystonia, and many organizations have decided to focus on specific forms.. This is helpful because there are sooo many people affected with the disorder I am sure one organization would be overwhelmed. My blog is not an endorsement of any non-profit. I volunteer wherever I am needed.. and have no money to donate. If it helps dystonia (any type) it helps me...

The Dystonia Medical Research Foundation (DMRF) was founded in 1976 and works to serve all people affected by dystonia. This very large organization that is involved in fundraising and advocacy to find a cure as well as education and support for those living with dystonia.

Dystonia Medical Research Foundation (DMRF) sponsors support groups in Canada and United States, hosts educational symposiums on dystonia topics such as DBS, hosts an annual symposium for families with dystonia, publishes Dystonia Dialogue quarterly, and maintains and seeks out publicity opportunities to bring more awareness to dystonia. There is also a wealth of basic information about dystonia on their website.

Members of DMRF are encouraged to fundraise to help fund projects for Dystonia Research which DMRF co-sponsors. DMRF is also a member of the Dystonia Advocacy Coalition.

For more information about Dystonia Medical Research Foundation check out www.dystonia-foundation.org

IN THE PRESS - Beauty Queen that uses Botox

2009-07-25T07:51:00.000-07:00

Miss Jacksonville, NC (2009) has cervical Dystonia, and talks openly about how BOTOX injections help her.

Read her story here

~ proof that Dystonia cannot take away pretty.

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

2009-07-13T14:44:00.000-07:00

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.

IN THE PRESS: the personal story of a Discovery Health Channel Dystonia Family

2009-07-12T18:45:00.000-07:00

You may have seen the Beery twins on the Discovery Health Channel. They were the medical mystery kids eventually diagnosed with dopa-responsive dystonia....

well...

my twitter friend: @JimmyMagahern recently wrote a story about them for the Arizona Times Publications

Here's the link: http://timespublications.com/july09-feature1.asp

It is a WONDERFUL story of parenting, determination and dystonia.

Learn more about the Beerys on their website here.

Self Help: Vacation

2009-07-11T17:43:00.000-07:00

For those of us with a chronic illness its very easy to get bogged down with the daily realities of your condition. Especially if your chronic illness is debilitating and at times an invisible illness like mine, you find yourself hiding out in your home among the comforts of a bed and the Internet....

Or perhaps its just me:P

The best self help routine I have participated in is a little thing called: VACATION.

Sometimes removing yourself from the stresses in your life is the exact pain medication you need. I am in no way saying that a chronic illness such as dystonia is caused by stress... but I am saying a beautiful sunset, exotic food, or just a change of scenery can do wonders for piece of mind.

Now for some dystonics, the idea of tromping around when you're in a wheelchair or have a neck that only goes to the left might seem daunting, but a vacation doesnt have to mean the shores of Greece, it could mean a local park.. and for the dystonics like myself that are able to hide the spasms and contortions, but not the pain and fatigue of their basically invisible illness --- even more reason to literally drag yourself out of bed.

If you get away from your life and people who know you, you'll be surprised how much better you could feel. Less people will ask you questions about your illness (especially if they speak another language) and the only thing that matters is that you enjoy yourself. ...

Although many chronic illnesses have no cure.. fun is probably the closest thing to one.

DEAR DIARY: the great caffeine expedition

2009-07-10T08:21:00.000-07:00

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.

Spotlight: Care4Dystonia

2009-07-09T10:28:00.000-07:00

Ive decided that I will take time to do a quick 'spotlight' on the many Dystonia non profits out there (that I can find) in no particular order under the advocacy portion of my blog... There are many different types of dystonia, and many organizations have decided to focus on specific forms.. This is helpful because there are sooo many people affected with the disorder I am sure one organization would be overwhelmed. My blog is not an endorsement of any non-profit. I volunteer wherever I am needed.. and have no money to donate. If it helps dystonia (any type) it helps me...

Care4Dystonia, Inc. is 'a nationwide community-based health organization dedicated to Setting the PACE: Patient Care, Awareness, Collaboration and Education for the dystonia community and the general public.' It brings high level dystonia information to the dystonia patient community, while serving as an advocate for patients navigating through the medical community. The organization provides a PDF newsletter, online support groups and forums, and lots of dystonia information (geared towards patients) on their website. They also sponser a health advocate forum on Wego Health Care4Dystonia are also involved with fundraising campaigns geared at increasing dystonia awareness. Care4Dystonia is founded by Nurse Beka Serdans, a dystonia patient, who brings her professional and personal commitment to dystonia patient care to the organization. For more information about this organization check out their website http://www.care4dystonia.org/

DEAR DIARY: I have dystonia therefore Im NOT an alcoholic

2009-07-08T08:56:00.000-07:00

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

IN THE PRESS: Dystonia family starts a non-profit in honor of their kids.. and gain national attention

2009-07-07T14:13:00.000-07:00

The Staab family of Florida starts Tyler's Hope for a Dystonia Cure in honor of their two children who are living with generalized dystonia. Their story was recently covered on CNN

For more info on Tyler's Hope click here :P

SELF HELP: Support Groups

2009-07-06T07:00:00.000-07:00

Offline support groups are a great way to meet other people with your condition and make friends. Sometimes there are guest speakers and even better -- food!

Here are some links to organizations that sponsor local support groups:

Canadian and United States Support Groups by Dystonia Medical Research Foundation

United States Support Groups by National Spasmodic Tortilitis Assoc.

International and North American Support Groups by National Spasmodic Dysphonia Assoc.

Alabama (USA) Support group by dystonia-alabama

Kentucky and Indiana (USA) Support Groups by Dystonia Association of Kentucky

United Kingdom Support Groups by Dystonia Society

Also check your local hospital for information about support groups.

I apologize if I missed anyone feel free to comment with your group's info :P

DEAR DIARY: but I am stretching

2009-07-05T04:00:00.000-07:00

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.

IN THE PRESS: Special edition!

2009-07-02T17:36:00.000-07:00

Its a Special edition because I wrote it :P

The Charlotte Post Newspaper wk of April 9-15 2009
_____________

Dystonia Misunderstood Ailment

Ethel Baker is just like any other older southern black women: she greeted me at the door with a warm hug, fruit tray, and offered me a seat. Her smile was genuine. Church music played softly in the background. However Ethel is not like everyone else, she has a rare neurological disorder called Dystonia.

I visited Ethel to watch The Oprah show. There was going to be a special episode on Parkinson's and Dystonia. We sat together, Ethel shaking a little in her chair as Oprah's guest talked about the need to use a cane so people would stop staring.

Ethel, staring at the screen, replied: “For 18 years we have been trying to bring dystonia to Oprah's attention. I'm so very happy.”

Dystonia is a neurological disorder affecting the portion of the brain called the basal ganglia. It is whats called a movement disorder, and is frequently treated in the same manner as Parkinson's disease. Dystonia is both genetic and acquired......

Read that rest by ordering a back copy from The Charlotte Post by calling 704-376-0496.

See the article on my facebook.

Spotlight: ST/Dystonia

2009-07-02T07:15:00.000-07:00

Ive decided that I will take time to do a quick 'spotlight' on the many Dystonia non profits out there (that I can find) in no particular order under the advocacy portion of my blog... There are many different types of dystonia, and many organizations have decided to focus on specific forms.. This is helpful because there are sooo many people affected with the disorder I am sure one organization would be overwhelmed. My blog is not an endorsement of any non-profit. I volunteer wherever I am needed.. and have no money to donate. If it helps dystonia (any type) it helps me...

ST/Dystonia is a 20 year old non-profit helping people with spasmodic torticollis (also known as cervical or neck dystonia) It provides information and support for people affected with this type of dystonia including a Disability kit to help its members file for SSI. They also sponsor informational events for the dystonia patient community.

Its website has a wealth of information for coping with cervical dystonia.. many of which are appropriate for other forms of dystonia. They also have an online forum.

ST/Dystonia is a member of the Dystonia Adocacy Coallition and participates in legislation affecting the dystonia community

For more information about this organization check out their website http://www.spasmodictorticollis.org/

DEAR DIARY: I survived January

2009-07-01T10:32:00.000-07:00

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

IN THE PRESS: Montell helps a dystonic woman

2009-06-30T12:00:00.000-07:00

Montell William discusses the social embarrassment involved with MS and dystonia in this episode of the Doctors.

Click Here for Video

SELF HELP: dystoni~yoga

2009-06-29T02:44:00.000-07:00

I LOVE yoga!

So needless to say I was very happy to find this link while google image searching 'dystonia'

http://www.spasmodictorticollis.org/info/nutrition.cfm?id=37

The link walks you through some yoga poses that are good for Spasmodic torticollis.. AKA cervical dystonia..

or as I like to call it NECK dystonia..

I mean lets keep it simple people???

DEAR DIARY: i'm so sick of this!

2009-06-28T11:06:00.000-07:00

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....

Advocacy Day 2009

2009-06-27T06:39:00.000-07:00

Congressman Frank Wolf
(R-VA-10th)
stops to pose for a picture :P

The goal of the Dystonia Advocacy Coalition (DAC) is to speak with one voice for issues affecting the Dystonia community. By developing and maintaining Congressional relationships we hope to raise awareness concerning the needs of people affected by Dystonia and to encourage Dystonia Champions on the Hill.
(from dystonia-advocacy.org)

This year I participated in Dystonia Advocacy day for the first time and it was soo empowering to meet with congressmen and senators to talk to them about dystonia. We were well received and were able to teach them a thing or two :P

For more information about participating next year or being an activist on important issues affecting the dystonia community in Congress right now.

go to this website and click on action alerts

DEAR DIARY: The irony of it all..

2009-06-26T08:19:00.000-07:00

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/

IN THE PRESS: Oprah

2009-06-25T17:46:00.000-07:00

Although not Dystonia's first time on television, the Oprah show brought Dystonia even more in the limelight. Watch clips of a Californian woman with Cervical Dystonia on the Oprah Show's website!

Dystonia on the Oprah Show

SELF HELP... Crack my back... Please?

2009-06-25T04:00:00.000-07:00

In one week I have had two of my dystonia friends ask me if I have ever heard of neurological chiropractic work for dystonia.... One of them is currently using it and says it is working great for her..

Here is a YouTube video of Montel Williams having a similar procedure being done on him for MS.. different disorder... same concept..

Thanks to a twitter friend for sending the link :P

DEAR DIARY: Ring in the New Year

2009-06-24T06:00:00.001-07:00

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.

A Photoessay for dystonia

2009-06-23T06:00:00.000-07:00

This is pretty much self explanatory:

The great people at SPA STUDIOS (Seattle) put together a wonderful shoot....

that included this picture:

and they did it for FREE in the interest of dystonia awareness.

See the entire photoessay ~ Narrated with music @ http://whoisjennmarie.com/dystonia

Thanks to:

Photographer/Art Director: Cave Canem
Lighting/Second Photographer: Scott Ralston
Stylist: Kelsey Troberg
Hair: Jessee Skittrall
Makeup Artist: Sheila Birashk
and When Paddison Director.

Welcome to my blog

2009-06-22T01:17:00.000-07:00

I figured the first blog should be a little statement as to why I started this blog in the first place. :P

Well, once I finally came to terms with the fact that I have dystonia, I decided that I could not be quiet about it, for the following reasons:

People can notice when I limp or when my arm is spasming and they ask anyway
I'm not even 30 yet, so I might as well practice telling people now because dystonia and I are most likely going to be friends for a while
I might meet other people that can help me cope with my symptoms

There began my advocate beginnings- and honestly, I never intended for it to be so big. I just wanted to go to a decent support group and find a ride to Advocacy Day in May. That since has grown into into MANY advocacy opportunities.

..and yes I found a support group and a ride to Advocacy Day in May :P

This blog is a place to go to not only learn about dystonia through firsthand stories, but also help others with dystonia through fundraising and awareness opportunities through daily posting of my diary, media happenings, self help and advocacy links and stories.

I'm not an organization, I am one of over 300,000 people in North America (unknown figure worldwide) with this disorder. I am speaking out about dystonia in the hope that the general public and medical community will research more into this debilitating condition.

Its not going to go away unless more people start making some noise.

Welcome~ now make some noise!