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December 15, 2006

Living With Dystonia

Bekaserdans72x722_7 Beka - I just looked at a stack of emails related to my work with dystonia. I had many from patients who were seeking help or asking for awareness magnets for distribution. One message caught my eye. It was from Solstice Neurosciences, manufacturers of botulinum toxin B -- MyoBloc. Di had written a set of questions for a presentation that I was to do in January for their sales reps in Houston. One question -- “Please share with us how this condition physically and emotionally impacts you and what is it like to live with dystonia” -- was a tough one, a question that I had not thought about although I had lived with the disorder for close to 20 years.

I could only think of the email that I had first received when I had begun to get involved as a patient advocate for patients with dystonia. That email had arrived unexpectedly and described the impact of dystonia so well. Jack had written:

“I’m a 41 year old male who was diagnosed with cervical dystonia recently and I think it’s now spreading to my left arm. I have a knot in below my left shoulder blade that hurts a lot. My major symptoms are a constant yes/yes head tremor, muscle stiffness, and tightness on the left side of my neck extending down my left arm. I can’t hold my left arm up over my head for a long time. It begins to get weak, tight, and painful.

Dystonia has destroyed me. I am an angry and bitter person, unable to cope. I am extremely depressed. I shower maybe three or four times a month. I sleep a lot to escape. I rarely brush my teeth and I don’t eat meals anymore. I just snack and drink diet Pepsi. I’ve had only three haircuts this year. Going to the barber is a nightmare. I don’t work. My 78-year-old mother supports me. I can’t do anything. I rarely leave the house anymore. I haven’t done anything socially since the dystonia began. If I need anything from a store I drive my mother there and have her go in for me.

I never thought I’d become like this. Medication only helps for a short while. My neurologist can’t do anything more for me as I have no money. I cry a lot. I yell a lot. Dystonia is the most horrible condition. I hate it. I hate what it’s done to me. I’m jealous and contemptuous of people who have no muscle problems. They haven’t got a clue how sickening this disorder is...All I know is that I’m not going to grow into old age with it. I went to a support group once, but didn’t get anything out of it. I’m not being critical of them because I know they suffer too. But they were mostly women, married, and older than me. I can’t relate. I can’t stand the constant head shaking. I’m a weirdo. How do you cope with this hideous, crappy disorder?”

I thought reading this email would make a great impact. I never heard from Jack again. But his email described dystonia all too well. I could relate to it. However, living with a chronic disease involves making a choice: to live life to the fullest or to do nothing, and not live at all.

December 15, 2006 in Beka | Permalink


I am scared of this illness it feels like a nightmare! I heve cervacle Distonia I am in some pain but can still handle it. Have to wait 2months for botox appointment.

Posted by: Irene | Oct 18, 2011 2:59:38 PM

I am scared!

Posted by: Irene | Oct 18, 2011 2:53:22 PM

I was diagnosed with cervical dystonia in March 2011. I had botex injections this past May which has greatly helped with the twitching in my neck. My neck still pulls to the right but does not constantly spasm. I had more botox in September but have seen no improvement yet with the pulling to the right. What I find very frustrating with my condition is that I can not drive, as soon as I try my head constantly twitches. Even when I am a passanger I can only look out the window. I have to pull my head to see in the other direction. Not being able to drive or work makes this condition very depressing. Has anyone else with cervical dystonia found that their condition makes them unable to drive? I am hoping that one day I will wake up and look in the mirror with my neck not twisted.

Posted by: Janet | Oct 17, 2011 12:26:04 PM

To Jody - stick wtih the Botox! I am a 30 year old mother of one. I was diagnosed at 28 and started Botox. I thought the first round was a joke. But the second round did show a little imporovement. It's now 2 years later and I've been getting it every three months. My pain levels are as low as they've been since it first onset. It honestly took until the 6th or 7th round to get true true relief, but it does work. Don't give up!

Posted by: Julia | Jul 1, 2011 8:33:05 AM

I have recently been diagnosed with Cervical Dystonia. My head tilts and shakes, I have severe pain in my left arm. I have presently been signed off work for a period of three months. I am due to return at the end of September. I don't know what to do as I work in a Warehouse environment and my doctor doesn't think I am going to be capable of doing this. I miss my workplace terribly! Is anyone out there working regularly with this condition? I am scared that if I return to work I am not going to be able to cope but I dont want to sit at home for the rest of my life. Any views on working with this condition would be greatly appreciated.

Posted by: Jacqui Moody | Sep 15, 2010 7:40:01 AM

hi! i am a 35 year old mother of two recently diagnosed with cervical dystonia. i received my first round of botox treatments 3 weeks ago with no relief. i have also had acupuncture and phsiotherapy and nothing is working. the doctor recently prescribed me clonazapam but it only makes me sleepy. i really don't know what to do because my head keeps tugging to the right and stays there. i feel like a freak because i hate to go out in public with everyone staring at me.i am a single parent and i feel like i can't do much with my kids. ican't even sweep my floor or go for a walk cause my head is all over the place and i get dizzy. the only relief i get is lying down and i can't spend my life doing that. i wish somebody could help me. i am getting soo depressed and angry and crying all the time. it seems nobody understands and they think it is all in your head.i wish someone could help!!

Posted by: jody | Jun 28, 2010 5:13:45 PM

i had told you how my boss was made at me right .
i worked for that company for22 years
in 1/6/06 my son had cancer lymphoma ok i do not know how to spell lymphoma haha, he is fine fo rthe moment and i hope to god he stays that way.anyway those two weeks he had to be in albany med andi was right there with him. that is the only time i ever took off of work besides now. well i have not even been given the ok to go back to work yet and my boss has terminated me tody because i can not go back to work for two more weeks
i had a feeling this was going to happen, she is a cruel person, how do they kick her when she down,well wheni get up again and i am sure i will , i will write her a letter thanking her. i am so angry at her i do not know where to turn my mom dies in may ,i have 3sisters and 8 brothers but i only have 4 of them behind and i just thank for having them ilove them and they love me to,they are so funny sometimes and everyday i look forward to talking to them.
so i have a 7 year old granson who i have taken care since he was born and i worry with no job how will i take care of him.
i guess if i work hard enough on getting thing together we will be fine
love you
thanks for listening

Posted by: Ethel | Oct 24, 2009 7:56:19 AM

i have had curvical dystonia for teo years like other people i went to work everyday with my neck bent to the right side sometimes the pain was so severe i could not even do my job like i was suppose to,honestly i thought i was doing a good job until i had to go for surgery fusin in the disc the reason for this was i walked like i was drunk all the time ,i did get the botox shots 9 of them in the neck
i guess it was ok but now it is 3 months later and with the surgery i had i have to wait a month to get the next treatment and i am totally in pain,i have not been able to go to worrk and i am getting vert depressed.
i am trying to deal with this but of course my boss is so upset at me for doing things wrong at work and i do not blame her ,she really is a great person but i do not feel good when she yells at me it makes me feel like a piece of crap,it depreese me more and i do not know how to handles this.
i have been trying to help myself by exercising and trying to get support for this condtion and i do not know if this is going to disable from my job i do not understand this condition and am trying to get a handle on it . ido not no where to go from here.
any info woild help a whole lot.

thanks for listening

Posted by: Ethel | Oct 22, 2009 11:39:39 AM

I intensely HATE dystonia as well. I really hate it


fight it !! achieve one thing a day, even if is a small thing......... try. XX big hugs. I understand.

Posted by: anne | Sep 15, 2009 5:43:35 AM

I have torticollis dystonia and now I have trouble swallowing many times, so I think that I might have cervical dystonia. Can you give me any solutions to being able to swallow easier?

Posted by: Deb | Jun 20, 2008 11:41:24 PM

I have dystonia and many other diseases I hate the shaking of my head. If I relax as much as I can it will stop for a few minutes. If you have no money call an attorney for Social Security Disability (SSD) and see if they will help you get SSD. The attorney should not get paid unless you win SSD. Sometimes it takes up to 18 months to get SSD if you qualify but it is worth it. I worked 31 years and had a masters degree, but my life is now taken up with all my illnesses.

Posted by: Sherry | May 12, 2008 6:38:34 PM

My grandson is 14 and has generalized dystonia. He is considering DBS. I would like some feedback on it, both positive and negative.

Posted by: Chrys | Aug 26, 2007 11:02:38 AM

I was diagnosed with oromandibular dystonia 2 mos ago. My symptoms were very minor in the beginning (7 mos ago)but are progressively getting worse. I am a 66 yr old female, quite active and still working. So far my symptoms only involve sucking motions of my tongue against the roof of my mouth and against my front teeth. The 2 neurologists I visited prescribed meds that only serve to depress and exhaust me, so I won't take them (it didn't help anyway).

My question and greatest fear is the unexpected future. Will this continue to get worse? Sometimes I feel as if my tongue wants to slide down my throat. So far I don't feel depressed, but I am getting very worried. Any thoughts or suggestions would be very helpful.

Posted by: debbie | May 31, 2007 10:40:04 PM

I have a 36 yr. old son, diagnosed with dystonia, 3yrs ago. The deseased has so progressed that he cannot talk or eat without meds, but with them he can barely speak. We are in the process of being considered for BDS, we will know in about 3or 4 weeks, it will be his only hope, but he is very nervous about it. It is very upsetting for me to see him like this and he cannot communicate with his daughter, since you can't understand him, he is very depressed and does not go out. I am praying for the right treatment for him.

Posted by: c.newton | May 8, 2007 1:09:10 PM

I want to thank you for this article I just ran across. I have Parkinson's and if that isn't bad enough, I now have Cervical Dystonia in my shoulders and neck as well. I can not make even most of my own family members understand how painful this disease is. After the initial diagnosis four years ago of Parkinson's, they walked very quickly away; but with my Dystonia, they have gone from fast walkers to marathon runners. I am now printing copies of this article to send to the people who's support I need the most.

I am scheduled to have my first series of Botox injections in two days and I am dreading it more than most people can imagine. It is not the treatment itself, but the fear that it may fail. I am 55 years old and can not live with this disease for possibly thirty more years. I just can not, especially with those around me running in different directions as quickly as they can.

Thanks for listening!

Posted by: Marcia | Mar 26, 2007 12:25:46 AM

I read your story with great interest. I developed Oromandibular dystonia very suddenly (literally overnight) about 2 years ago. It has wrecked my life. I find speaking, eating and swallowing extremely difficult and am living like a recluse. It has wrecked my career, and the first Botox injection I had made no difference at all. I am now on a pretty massive dose of 30mg Diazepam per day plus Sinemet and other drugs. I live in Ireland where there is a chronic shortage of neurologists (about 12 in the entire country) and it takes ages to get an appointment.
I wish you luck.

Posted by: Jim | Mar 8, 2007 3:15:35 PM

I have had this cervical dystonia, plus left shoulder, hand, oromandibular for the last 10 years.
I have migrating tissure pain in my fingers, but thank goodness diazapan, just 15 mg. allows me to sleep.

I don't want Botox even though my insurance probably would not pay anyway.

My left hand has become a little deformed. I have trouble speaking because of jaw spasms. When I eat I have to hold my right hand on the side of my face so I am able to chew and swallow.

What worries me is after I have spent all of my savings on doctor bills how am I going to live?

I wonder how far gone will I have to be to get Social Security disability or for the neurologist to even suggest I'm disabled? Also, it takes 2 years to get medicare after you apply and then I would be on medicaid? and no one takes that.

I have had this cervical dystonia a little since my teens, but it got bad in my late twenties but my doctor gave me valium for tension and it worked!
I just thought I was a very tense person for 25 years.

My doctor died and I had trouble getting medicine and that's when I went to the neurologist. My neck was leaning way to the right, also my side and my feet hurt. After begging I was able to get 10 mg. a day and I need 15mg. I just don't understand these doctors!

I know I can make it without the botox because I have had this mess for so long. I finally made it to 59 years old.

If I had not had the compassionate doctor with the good sense in 1977 to give the the diazapam I would have been completely deformed.

I just don't think doctors really give a hoot about this, it's just the money and prestige. They have fund raisers but why does it just go to the rich?

I have handled it because I have always had it.

I guess it's like being born blind. You just don't know any better.

Finally diagnosed in Houston

Posted by: cece | Jan 22, 2007 10:08:43 PM

As I read through this entry, it brought back memories of my mom and how she lived and faced 'spasmodic torticollis' as it was called then. I remembered the different therapies she tried, the therapy she didn't try (surgical intervention) and how dystonia affected every aspect of her life. Her only moments of relief were when she was asleep, which she couldn't really enjoy because she was asleep. My mom was a particpant at Columbia Presbytarian Hospital in NYC in an early double blind study of Botox. After a second trial with the Botox, my Mom did not continue with more trials. She had received little to no relief, the little relief possibly a placebo effect. She did meet another woman who was in the trial who did experience relief. They didn't stay in touch. My Mom died several years later in end stage liver disease after a course with cirrhosis. I always wondered if the Botox somehow caused or contributed to the disease. If that was the case, though, I know it was worth trying to find a resolve for my Mom's dystonia.

When I read the letter from the man who was in his early forties, I thought about how my Mom faced her dystonia and how difficult it had to be to come to terms and accept it, move on with her life while always searching and being open to possibly helpful treatments. I remember saying to my mom once, "This affects every single aspect of your life, Mom, doesn't it?" Tears came to the edges of her eyes, we hugged, and she told me that I was the only person in her life who understood that. We cried together now and then and shared a closeness I had never known with anyone, even with her!
My Mom was also a nurse. She retired when her dystonia just absolutely prevented her from working anywhere, although she continued to be the nurse for all the people in her life. She took care of me during an awful bout I had with Crohns Disease.
In the beginning with my Mom's dystonia, she was self conscious about the spasms she had. Her chin pulled down to one side of her chest. It took her a while to be able to push herself into getting out of her home and car and go into a store. People did stare at her, of course. She somehow learned to look at those who stared and smile at them. Usually the person who had been staring would smile back and say hello... and often a conversation having nothing to do with her dystonia would ensue.
Even her husband had no clue as to how much this affected every aspect of my mom's life. My Mom wondered how it was people didn't realize. I explained to my Mom it was because she still did things and she did not complain. The closest to complaining she ever came was to excuse herself from a group of people, go into her bedroom, lay on her bed and get into the most comfortable position she could, where the spasms decreased and she would be able to sleep for a while. She always got up and carried on cheerfully, after her rest, doing whatever task she was involved in.

I am a Registered Nurse now. I was still in nursing school, a non traditional student, when my mom died. After ten years of nursing experience, I still have learned nothing I might have done that could ease her pain, except for the little I did, which were gving her shoulder and back rubs, listening to what she said. learning what I could learn about dystonia and sharing new aspects of each our lives.

I am happy to know there are treatments that help people with dystonia. I know if my Mom were here, she would be happy about that also.

Posted by: sheryl | Dec 20, 2006 3:25:50 AM

They now do Deep Brain Stimulation (DBS) surgery for people with Dystonia. I have witnessed what could only be described as miracles. One patient left me a voice mail telling me "Two days after you programmed my stimulators my chin lifted off of my chest and my eyes opened up. Thank you for giving me my life back." DBS is not offered everywhere but is much more common than once was. First for tremor, then Parkinson's disease, and now evidence is mounting that it is a relatively safe and effective treatment for those without recourse.

Posted by: Chris | Dec 19, 2006 8:15:31 PM

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