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 he 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.


LIMITLESS. HOW YOUR MOVEMENTS CAN HEAL YOUR BRAIN. An Essay On The Neurodynamics Of Dystonia.


INTERTWINED · HOW TO INDUCE NEUROPLASTICITY. EBook


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!)