Saturday, December 30, 2017

December Update...

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Well, the holidays have come and gone. I am hoping that I can have a fresh start in 2018. I suppose that is what we all hope for.

The positives are that I am driving again and getting out more. Having some independence back is HUGE! I can make small trips to the store and take some of the burden off of my husband which is saving our marriage and our sanity. I'm still seeing Dr. Kukurin once a month to monitor my progress. I have less pain and feel like all of the hard work is finally paying off. The pain that I do have seems to be more localized and not as widespread. It is mostly my on the right side of my jaw, temple, neck, and shoulder. My left quad and hip are usually tight and sore as well. There are days when I have other areas flare up but those are my current "hot spots".

I still try and fit in all of my therapy and take rest periods during the day. I am very pleased with my progress. Of course, I would love to accelerate this progress but I have learned to be much more patient than I used to be. Between the Botox and the neuroplasticity training I am hopeful that I may someday be able to do some of my much loved activities again and possibly go back to work.

I still do the rotator video and Left Brain exercise videos from Dr. Antonucci. I also use the laser gym for eye therapy. I do deep breathing exercises 2-3 times a day for 15-20 minutes.

The last few months have not been so great. After my last Botox injections (Oct 24th) I got my usual flu-like symptoms and felt pretty bad for the first two weeks which is normal for me. Of course the doctor who does my injections said that I am the only patient that hast this type of reaction. This time the fatigue and symptoms of congestion and my cough lingered. I felt like everything I did was exhausting and I really had to push myself to go for a walk or swim. I was also having a lot of skin flare-ups on my neck, face and scalp and made an appointment with a dermatologist. She told me that I have a staph infection and would need to take antibiotics for 1 month. My skin is starting to clear up, but then we got struck with the flu. The whole family got it so Christmas was a bust. The most difficult part of being ill is that my dedication to my therapy and exercises has fallen short. I feel so tired and weak all of the time and cardio is the last thing on my mind. On good days I try and do it but there have not been very many good days. I still do my eye exercises daily and try to stretch but I am trying to find the strength to get back to physical exercise that Dr. Farias finds so important to bring the body back to balance. I was diagnosed years ago with an immune deficiency (selective IGA) and I made an appointment to see the immunologist to get retested which is in January. It has been 5 years sine I have seen her.  Hopefully I can get this issue addressed and figured out so that I can get moving again.

I wish you health, happiness, peace, and joy.

Happy New Year!

Monday, November 20, 2017

When you are told not to let your disease define you.

I get a lot of advice from well-meaning friends, family members, and my doctors. Sometimes it is helpful and other times I want to implode. I understand that my chronic illness is difficult for them to understand and most of the time it seems like I am consumed by my dystonia.

On Facebook I post a lot of stories and and share updates from my amazing doctors. I usually get a few "likes" from other patients, doctors, and my closest friends who know my struggle. Everyone one else has probably unfollowed me or just keeps on  trolling on through. I am hoping to spread awareness about dystonia but the only people looking are already aware.

What many of them have said to me is "Don't let dystonia define you". "You are not dystonia". "Maybe if you tried a little harder not to think about it". "Have you tried this - (Insert endless suggestion list here) exercise, herbal tea, prayer, books, diet, etc... ? 

 What they don't understand is that when you have dystonia you never get a break from it except when you sleep. Sleep does not come easy for me and I have suffered since I was 19 ( now 30 years ago) with falling asleep. I would take sips of NyQuil back then. Later I used Tylenol PM. Then Amitryptaline. Then Xanax. None of it helped long term. In 2011 I had insomnia so bad I ended up admitting myself to a inpatient psychiatric hospital because not one doctor could find the source of my neck pain, anxiety, gastrointestinal issues, hearing loss, immune deficiencies and headaches. I thought I was nuts.  In the Psych hospital I was diagnosed with PTSD from a childhood trauma. There they gave me trazadone and celexa. It helped for about three months then back to feeling wired and tired and I still had crazy pain in my neck. When my head finally twisted and I had tremors and pain so bad I cried all night and most days I was finally diagnosed with cervical dystonia. (which four months later I found out that the cervical dystonia was secondary to the oral dystonia which is my primary diagnosis). It took almost thirty years to for me to get properly diagnosed. One doctor prescribed me ambien and it was amazing and the best sleep I'd had in years. Unfortunately , they only gave me a 30 day supply and said that there were too many risks involved. I was willing to sign a waiver or do anything for more. I guess there have been reports of people driving cars and sleepwalking while taking this drug and doctors don't want the liability. I totally understand, but at the time it was incredibly frustrating. Now I take herbal supplements that seem to work fairly well. Controlling my anxiety has been the greatest hurdle.

So I have been defined my whole life by dystonia. Dystonia was very sneaky but now I know the "why" to all of my symptoms. All of these symptoms are still with me. Every day. I try not to complain as much to anyone. On days when I can't feel my left foot or my lip and cheek start twitching - it's hard to ignore. When my left quad feels like a cable or my foot gets stuck in a "charlie horse" cramp - it's hard to ignore. When someone says, "look at this" and I cannot turn my head in that direction without pain or without physically willing and pushing myself to do it-it's hard to ignore. When I have insomnia and start to panic thinking about the trauma of being locked up for 8 days I get scared and that is hard to ignore. It is impossible not to feel "defined".

I am trying to get out more and the Botox has helped ease the spasm and pain along with my exercise regime. That regimen takes up to 3 hours a day. My whole life has been spent dealing with dystonia and still is. Now that I know the definition of dystonia I can redefine the meaning and hopefully help others who feel lost and are suffering. If dystonia defines me, then so be it. 

You can see the published version on "THE MIGHTY" HERE

Sunday, October 8, 2017

October Update....

It has now been three months since my visit to Toronto to attend the cervical dystonia workshop with Dr. Farias. 

I diligently have been trying to do the therapy and exercises Dr. Farias showed us along with the eye movement therapy and exercises from Dr. Kukurin and Dr. Antonucci. It adds up to about three hours a day. By the time I am done with the therapy and taking care of my son I am tapped out. I have seen significant improvement compared to where I was last year. My pain is lower. On a scale of 1-10, last year was a 10. Now I average a 6. I no longer think about suicide or running away. I am able to walk a bit easier. I drove a car for the first time in 2 1/2 years. THAT is huge. I was so afraid to try it because the last few times I drove in 2014 my head would shake uncontrollably. That did not happen! The Botox injections combined with the exercises and therapy are working! When people ask if I work it is hard to answer. Yes, I DO work. Harder than you can possibly imagine. Managing dystonia is my full-time job. On days when I am not able to do the therapy I can feel my symptoms getting more intense and my muscles tighten up. The deep breathing is key. I try and do the cardio at least three times a week and next week I want to start swimming again. This summer I swam almost every day it felt amazing and I was getting into better shape physically and mentally.

I tried to go shopping with my friends and it is still hard to be "in the moment" when I'm trying to control every movement I make. Nobody knows that I sometimes can't feel my left foot or that I have shooting pain in my neck. My muscles have searing, hot pain and I get a rash that is so itchy I could scream. When I try and look to the left I have to really concentrate and try as hard as I can to do it fluidly and without spasms. I am doing so much better but it is all relative. This pain is just more bearable. Not acceptable, but bearable.

Saturday, July 29, 2017

July Update. The difference between torture and therapy is the outcome!

It has now been seven weeks since I saw Dr. Joaquin Farias in Toronto and started a whole new regimen of therapy and physical exercises. 

Most of the exercises are very similar to what I have been doing with Dr. Kukurin and Dr. Antonucci. The difference is that there a specific order and sequence to the process. Deep, diaphragmatic breathing is something I had been trying to do since I was diagnosed, but never felt the benefits because I was not breathing properly. I was only doing it once a day for 20 minutes. Now I am doing the breathing exercises three times a day for 30 minutes and it has been very beneficial when combined with the other therapy and physical exercises. I am still using some of the exercises from Dr. K and Dr. A. as well as the new ones from Dr. F. I also get a massage from Linda at Dr. Kukurin's office once a week. That has also been very therapeutic in trying to lengthen the shortened muscles in my neck and shoulder.

Originally Dr. Farias analyzed my gait and said I walked "half sexy, half like German Soldier".  Not half bad, right?

He said that to correct my gait I needed to start jogging or running to open up my chest. By doing so, it would help me start to walk with a better posture and less rigid. Unfortunately, I had pulled my hamstring doing yoga the week before we went to Toronto, so I was very sore and needed to let that heal. Also, it has been unbearably hot and humid or raining every day here in Pittsburgh. So instead of jogging, (which I did try for about 4 days and I felt the difference in my head and neck pulling, but my hip and hamstring were not ready yet) I started the cardio dancing. 

The first few days I felt ridiculous. I took dance lessons as a kid and remembered some moves and at least have a sense of rhythm. After a few days my body finally started to let go and I felt more fluid and relaxed in my movements. 

Dr. Antonucci had asked if I had tried dancing and suggested it the first time I saw him in April of 2016, but I had not had Botox yet and was in a lot of pain. I am not sure if I would have been able to dance as well without the Botox. I think it may have been frustrating.  Dr. Farias has other patients who dance and do not use Botox. Once again, the difference is the sequence of when I do the cardio in Farias's method. I don't just wake up and go for a jog or start dancing. 

  • I eat. 
  • I rest. 
  • I breathe. 
  • I stretch. 
  • I relax the tongue. 
  • I do eye movement exercises. 
  • I do the neck exercises.
  • THEN I do the cardio.

 I also have also been swimming and floating as much as possible.  I have my 7 year-old son at home with me and this regimen takes up a lot of my day. We are lucky enough to have a community pool down the street that we can walk to. Swimming is a good way to get us out of the house and spend some fun time together. I can also use the swimming as my cardio for the day.  I use a kick-board to support my arms and have been able to do a couple of laps without it recently. 

Here is a general outline of my daily regimen.

  • 30 Minutes of Breathing, 3x per day
  • 15 Minutes of Stretching/Video exercises 3x per day
  • 30-40 Minutes of Cardio-Dancing/Walking/Jogging
  • 30-60  Minutes of Rest after eating. No TV, Screens, etc...

All-in-all it is a lot of work and some days I just want to say, screw it and wish it would all magically go away. But obviously, that is not going to happen. I do feel less pain and I do feel like I am making some progress. I had my most recent Botox injections this past Monday and my neurologist noticed a significant difference in my posture and pulling. He did not see very receptive to the "alternative" therapies and I think he feels that the Botox is the method that is doing all the work. For me, I know that it is the combination of both. 

I just feel so lucky to have found such incredible doctors and therapists who just want to see their patients get better no matter what the method is. 

Saturday, June 24, 2017

Toronto Workshop for Cervical Dystonia with Dr. Farias-Follow up post...

Working with Dr. Farias was an amazing four days. I am working on a testimonial for his website but it may be five pages long! There was so much information given in so little time that it took me a few weeks to organize my notes and get into a new routine. I urge anyone with dystonia to see Dr. Farias and participate in one of his workshops. Having the understanding of why your body is dystonic is very healing. I wish the workshop had been 5 days long. I feel like there is so much more to learn and experience.

His workshop has been the most helpful and enlightening experience so far on my journey with dystonia. I finally felt like someone had all of the answers to my questions and I did not even have to ask. His passion, compassion and enthusiasm was contagious. He sent a lot of us home with more hope and determination to push ourselves harder- physically and emotionally. We will all get stronger by facing our fears-and there are many. I am overwhelmed, yet excited to start this next chapter in my journey and feel so grateful that I was able to work with Dr. Farias and the other participants in the group.  I have some videos that I took during the workshop but I do not want share them because other members of the group are in them and I do not want to post without their permission.

Since I was at the peak of my Botox when I was there it was easier for me to do some of the movements so that made it feel more exciting. I am not sure how I would have felt going to this workshop without the aid of the Botox and feeling stuck. I remember the frustration of trying to do exercises battling the pulling and the pain. It would have been easy to give up. Botox is not for everyone and trust me, I had a horrible experience with it. It took me a year and a half to try it again. I am so glad that I did. It has given me the ability to do the therapy with greater ease and less frustration. I am able to get out more. I was able to see some of Toronto without feeling like I wanted to lay down all day. I am able to hold my son without as much pain. It has given me a little bit of "normal" back.

I highly recommend his E-books available for download on his website.



It has been two weeks now since my return and the exercises and techniques he shared are wreaking physical and emotional havoc on my body. He said this was to be expected so I am trying to go with the flow and let it happen.

Wednesday, May 31, 2017

Four more days until Toronto with Dr. Joaquin Farias

In my never-ending quest to get better and have a greater sense of normalcy in my life I am going to Toronto, Canada next week to see Dr. Joaquin Farias. Dr. Farias is a world-renowned specialist in the treatment of all types of dystonia using movements to heal the body. He holds workshops for several types of dystonia and am I excited to meet the other people who will be attending. He said the groups usually range from 8-10 people. I am hopeful that he can help me manage my symptoms along with the combined efforts of all of my other doctors. 

My primary goal is to avoid Deep Brain Stimulation surgery. I have seen how amazing this surgery works for some people and for others it has not. If it comes down to being my last option I will definitely try it. In the meantime I am at week 6 of my Botox injections and have been able to do a little more activity with rest in between. Walking my son to the park and watching him play is like a dream come true. The Botox is like a mean trick. It fools you into thinking you are getting better, but it is just a temporary reprieve from the insane pulling and twisting of the dystonic muscles. It has still been a HUGE help in making my days a bit more bearable and giving me the ability to do my therapies with much more ease and range of motion. I do not think of suicide as often as I used to. I feel a bit more hopeful. I have smiled. Not the usual "putting on a good face" smile, but really smiled and felt truly happy for the first time in over 3 years. It is fleeting but I'll take it and hope that it blossoms into better days ahead.

I also had my disability hearing last week. That was the most physically and emotionally draining thing I have done in a long time. The reality of accepting that I am unable to work or drive a car along with everything else I used to do was tough. I knew it was coming. Being under scrutiny and people questioning if your condition is "real". It's freaking real all right. It's the hardest job I have ever had.  I work so hard every day in the hopes that I may be able to enjoy all the activities my family and I used to share. Snow Skiing, Frisbee, Swimming, hikes (you get the picture...I was active). 

My beautiful family. 

(And Botox at it's peak-Head straight!)

Tuesday, May 16, 2017

Sometimes it's not all about me...

Jason Dunn Story. He is SUPERMAN!

Jason Dunn occupation, retired playa. my girlfriend settled me down. at least for now haha. I was diagnosed at age 6. I have generalized dystonia. I’ve had Deep Brain Stimulation Surgery 5 times, my first DBS Surgery was in 2000 and I was his first dystonia patient after about a year with no results he thought he didn’t get the electrodes in the right spot so he tried moving them 4 times between 2000 and 2004 I think. the only Doctor that has helped a little was Dr. Vitek. I went to see him in 2008. I wish I could still go see him, but he moved to Minnesota. He wasn’t going to give up like my past two doctors. I’m going to go see a new Doctor December 18th. I definitely have good and bad days. one of my best friends i met through the DMRF has to be Jessica Feeley. I text, email her a lot for help, advice, and support. I’ve been on local news and TV and National Geographic. That story keeps promoting awareness on youtube. It has almost 3 milion hits and that’s how I met my girlfriend she commented on it and i commented back. I’d have to think that the world knows more about dystonia because of me and also with the help of my agent, Mike Delise, who is a life-long friend and supporter.

Friday, May 5, 2017

Botox: Round III

So I am into day 10 after receiving my third round of Botox. This last time was rough for me. I ended up getting sick (a terrible head/chest cold) on top of the usual flu-like side effects from the Botox. I felt so weak and drained. 

The first few nights I woke up soaked in sweat and my appetite was low. I also had cold chills and felt feverish. I pretty much laid on the sofa for a week and tried to rest as much as possible. After 8 days I finally felt like I was getting some of my energy back. My pain has gone down a few points. On a scale of 1-10 my pain was a 9 before Botox and now fluctuates between a 7-8. I still have the pulling and tight muscles in my neck. It is just less intense. What is most bothersome is the disorientation. I feel like I had several margaritas (with the cheap tequila) and my head is a bowling ball floating on a pin. 

 I keep a daily journal of my symptoms and and pain level so that I can refer to my last injections and see what is different and what is the same. 

Here are the links to my journals if this interests you. 

January 2017

February 2017

March 2017

April 2017

Saturday, April 29, 2017

Next Stop: Toronto

On my journey to find a way to manage my dystonia am am seeking treatment in June 2017 with Dr. Joaquin Farias.

Dr. Farias holds group dystonia workshops in Toronto, Canada and I feel like I want to try every avenue before considering Deep Brain Stimulation surgery. All of the treatments I have tried thus far have been helpful but the progression is slow. I am not a patient person and I want my life back. I've read his book "Limitless. HOW YOUR MOVEMENTS CAN HEAL YOUR BRAIN. An Essay On The Neurodynamics Of Dystonia." three times already trying to absorb all of the information and regain some hope that I will live a normal life again. All of my doctors are super-supportive of my upcoming trip and hope that Dr. Farias can find the missing piece to my dystonic puzzle.

To learn more about Dr. Farias please visit his website.

Thursday, March 16, 2017

Muscles and Anatomy - Trying to figure out my Dystonia

I found a wonderful webpage that I wanted to share that shows muscle identification. I am trying to educate myself on which muscles are pulling and dystonic. I want to be prepared for my next round of Botox and for my upcoming appointments to better explain exactly where I feel the pulling and pain instead of pointing to a general area and hoping the doctors can figure it out.

You can access the page by clicking HERE.

Sunday, February 26, 2017

Botox update-Week Six


I'm at the "peak" of my Botox injections and I can truly say that they have been so helpful in reducing my pain and symptoms. I am so grateful for Dr. Kukurin pushing me to try the Botox again. 

By having the Botox injections I am able to do my functional neurology exercises easier and more precisely. This will help create new neural pathways (plasticity) in my brain and make lasting changes to help my body function and move properly. 

 I am also incredibly grateful to Dr. Leichliter for being an expert on injecting the Botox into the proper muscles via EMG and taking the time to listen to me and answer all of my questions. (There are plenty of them!)

On a scale of one to ten I have been averaging a 7-8. I've had one day where I felt worthy of giving it a 6. I have been sleeping better and do not feel as "wired" all the time. Walking has been less painful and not as scary. My mood and temperament has been better. When you are in excruciating pain it is hard to be fun-loving and playful. I am so thankful to be able to have more patience and quality time with my son. To be able to watch a movie or read a book with him and not having my head shake is like a dream. Brushing my teeth and eating are a little better, but my head still feels like a floating bowling ball and out-of-control at times. I still spill food on myself and spitting toothpaste into the sink is like an Olympic event. 

Sometimes I get down on myself for not being who I used to be. The hard-working, adventurous soul. But then I realize I am still that person. The job has changed and I've never worked so hard in my life. Dealing and trying to manage dystonia is a full-time job. The adventure is not what I planned but it is still a journey. I have traveled to brain centers, discovered new ways of healing and learned how incredibly strong I am-even on days when I feel broken and weak.

 Of course, there is now the anxiety of when does the Botox wear off and how long do I get this slight reprieve from the pain? One day at a time....

Monday, February 6, 2017

Main muscles involved in Cervical Dystonia.

I have been trying to educate myself on the dosing and muscles that are injected for my dystonia. It is hard to explain to the doctor where something hurts and then realize that where it hurts may be caused by a different muscle contracting. It is very complex.

Visit the BOTOX website for more information. 

Thursday, February 2, 2017

Botox update: Week 4

I wanted to give you an update on my Botox injections and how I have been feeling. 

The first few weeks I was nervous. I felt like my neck muscles were getting so weak that they could not support the weight of my head. I felt weak and like I had the flu for a few weeks. I had cold chills and was completely exhausted. 

Eating and brushing my teeth are the most difficult tasks. Anytime I have to be in the position of bending my head forward to eat soup or spit toothpaste into the sink is difficult and my head feels like it's going to flop over and I have no control. I still have pain but it has gone from a 8-9 on a scale of 1-10 down to a 7-8. I'll take it. Walking is still not the most pleasant experience. I sometimes feel disoriented and like a bobble-head. Some days have been a little better. Every day is different. Dr. K incorporated some new exercises into my therapy so it has been nice to have a change in my daily grind. Doing the exercises and the therapy have helped the weakness in my neck a bit.

Here is a link to my daily journal for January if you are interested in reading about my daily thoughts and feelings. 

Saturday, January 14, 2017

Diagnosis Dystonia

Diagnosis Dystonia: Diagnosis Dystonia is a patient authored resource for dystonia patients, loved ones, and caregivers.

Video of my Second Round of Botox Injections

This video was taken on January 12, 2017. The injections are sometimes painful but the whole procedure takes less than 15 minutes for me. The sound you hear is the EMG machine. If the needle were injected into a healthy muscle there would be no sound. The louder the sound of static is, the more dystonic muscle activity is occurring. This is what helps the doctor decide where to inject the Botox.

Psychologically it is a very scary thing for me because of a horrifying experience that I had a few years ago with Botox where I was barely able to walk or feed myself for a few months. The Botox can either provide great pain relief, no relief or make your symptoms much worse. The only way to know is to try and wait. It's a gamble. My anxiety has been high the past week and I have had difficulty falling asleep. My mind is racing with "what if" scenarios.

The feeling of having Botox is so bizarre. I’m thankful that so far I am not experiencing any significant pain, it’s just the feeling of a heavy weight that won’t move in certain situations. Mostly bending over and eating are where I am noticing difficulty. It feels like if you would try to balance a heavy book on your head and walk but your head is the book. (If that makes sense?) Looking to the left is still difficult and feels very strange and out of control. 

I am still feeling very tired physically. I do my eye exercises daily as well as yoga. I got back on my stationary bike yesterday for the first time but my energy has been very low. I spent a lot of time sitting and reading or watching TV. Those are two things that I was not able to do for almost two years without a struggle or pain-so I am thankful for that gift. 

The Injection Process

Botulinum toxin injections are administered by trained medical professionals (usually a doctor, physiotherapist or dystonia nurse) and most commonly delivered at a local hospital. Some people find the injection hurts a little but others are not concerned about it at all. Depending on the location of the muscle spasm, doctors will either select the muscles by observing the abnormal postures or movements and feeling for the muscle spasm or will use an EMG (electromyography) machine which measures muscle activity.

The number of injections will vary depending on the severity of your dystonia. Talk to your doctor about the number of injections you will need.

After the injection, the treatment takes effect gradually over 4–7 days, sometimes longer. Where it is a suitable treatment, botulinum toxin provides significant relief for the majority of people but it is not perfect - usually mitigating symptoms rather than completely eliminating them. The positive effects of botulinum toxin injections can last up to 16 weeks, sometimes longer; although many people find that the injections need repeating before this and usually attend a clinic around every 12 weeks.

Friday, January 6, 2017

Dystonia and Genetics

I have been very concerned about the possibility of my dystonia being inherited. I am estranged from my mother and I have no way of knowing if anyone on her side of the family had any form of dystonia. The last few times I saw her she was blinking excessively which may or may not be a sign. 

I am not concerned for myself, but for my two sons and I pray that this is not passed on to anyone else in my family.

Here is a copy of the Dystonia and Genetics pamphlet from the Dystonia Society Website.


Tuesday, January 3, 2017

Dystonia Alex's Sory

There are very few options for the treatment of dystonia. 

Deep Brain Stimulation is one of them. In this case and many others it has given sufferers of dystonia a large portion of their lives back. This surgery is something that I have been considering if the current treatment path I am on does not continue to improve. I have hope that functional neurology combined with the BOTOX will work, but I also want to explore other possibilities so that I am prepared if it does not work for me. I wanted to share these videos so that anyone considering DBS can see what the surgery looks like. So happy for Alex and her successful treatment.