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.