BEBCRF Support Group Meeting – Toronto, Spring 2014
Neuroplasticity - A Patient's Perspective
Debi and Carol, patients of Dr. Joaquin Farias
In Memoriam: Dr. Martin Kazdan
Unfortunately, on November 12, 2014 Dr. Martin Kazdan passed away in his 84th year. Dr. Kazdan was one of the founding Medical Advisors who helped start our organization and helped to guide our Board to where it is today. As the Foundation grew he became our Chairman Emeritus.
Dr. Kazdan was Dr. Stephen Kraft's first Botox student in 1985 after Dr. Kraft was the first in the city to use the drug. He attended Dr. Kraft's clinic to observe the techniques and, from then on he ran the second clinic for patients with benign essential blepharospasm. One of his patients was Olga Meister, who with her husband Sam, convinced Dr. Kazdan to help form the Foundation.
Dr. Kazdan asked Dr. Kraft to help and in the early days they hosted visiting speakers and guests at informal lunches. Soon they became a tag team getting the blepharospasm support group up and running and sharing "Ask the Doctor" panels at their semi-annual meetings for over 20 years..
Dr. Kazdan pioneered the use of ocular ultrasound and was a passionate advocate for eye spasm treatment while not retiring until 2012. He was a very well known and respected Ophthalmologist and Plastic and Reconstructive Surgeon. He will be sadly missed.
Letter From The President
We have updated our brochure and are distributing it throughout Canada to increase awareness for patients and Medical Practitioners. Should you wish to order some brochures, please contact us and we will gladly send them to you.
We are still in the process of upgrading our Website with a new look, which we hope you will find easier to read and navigate. It is a very complicated and costly process and we are hoping very shortly to have it available for everyone. At the same time, we will be adding the EyeOpener Symposium 2013 videos to the Website for your viewing. This project would not have been possible without the financial assistance which we have received from both Allergan Canada and Merz Pharma Canada Ltd. Sponsorships and the continued support from our members.
In the coming year, our goal is to continue increasing awareness to patients but also to the many Doctors who aren’t familiar with Blepharospasm, Cranial Dystonia (Meige Syndrome) and Hemifacial Spasm (HFS) across Canada. We would also like to continue expanding the locations of Support Groups across Canada so that patients may get more support in their local community.
I want to thank everyone for your continued support and look forward meeting you at the next Spring Support Group Meeting on February 8th in Toronto. If anyone has a suggested topic for a future Support Group Meeting, please contact us.
Neuroplasticity - A Patient's Perspective
The following summary took place at the last meeting from Sunday May 4th, 2014 presented by two patients of Dr. Joaquin Farias regarding Neuroplasticity and Bio-Feedback.
A synopsis of the presenters’ history was used to open the meeting and bring the talk into perspective. Debi's blepharospasm began with facial tics in the lower portion of her face and jaw that were quite painful and then progressed to her eyes.
- Apparently, you can teach an old dog new tricks!
- The brain has an ability to reorganize itself by forming new neural connections throughout life …or to “file away” those no longer utilized
- There is an ability to form new pathways to create better functioning …or to correct malfunctioning pathways
After some time she found that she had blepharospasm and was referred to a neurologist. The neurologist could not help her and with the aid of the Foundation she found Dr. Yasser Khan. After a limited myectomy her condition improved to the point where she could open her yes rather quickly after a spasm.
Debi had a huge problem with balance when her eyes spasmed shut. When they opened she was totally disoriented; would trip and fall, bump into things and/or fall off the curbs. It was very difficult to make her way through the community. In 2012 she heard about Dr. Farias and since she had been laid off work permanently, she and a friend decided to spend 12 days in Spain: four of those were spent with Dr. Farias.
- Neuroplasticity can also mean that wrong connections can be made
- Misfiring down the wrong path can cause maladaptive reactions such as the eye spasms we have with Blepharospasm
- There is no known cause of why this occurs, but some research seems to show that the brains of those with dystonia may be extra-plastic.
Carol started having problems when she was driving back and forth to work in 2003. Her eyes would just want to close when she was driving. Soon the spasms progressed to full days. Her condition was diagnosed rather quickly and she began botox injections but they would not last more than a few days and her eyes would be closing again. Within a year her blepharospasm progressed to her throat to the point where she was having problems breathing and speaking. Injections into her vocal chords improved her breathing somewhat. Her own research led her to supportive diaphragmatic breathing just to help breathing issue even with the botox injections.
In 2012 she attended a course in Toronto that Dr. Farias was giving. At first she was sceptical but began to wonder if what she had done to control her breathing was not some form of neuroplasticity.
We all believe in neuroplasticity. The brain has an ability to reorganize itself Everybody is reading how they are trying to reprogramme drug users and are being successful in reprogramming some of them. We know we can learn, and, that we forget what we do not use. Every day we are exposed to things, then in sleep, we keep some as memories and get rid of others.
- You forgot the name of that person you went to high school with when you see them at the mall
- You remember all your computer passwords
- You forgot where you put your keys….again!
- You learned new Zumba dance steps
- You call your grandkids by your dog’s name
What we have to remember is that the new pathways we create can be functional or dysfunctional. What we do during the day can reinforce either the functional pathways or the misfiring non-functional ones.
Blepharospasm has created dysfunctional pathways and we have to work our way back to creating a new pathway because the old pathway of normal functioning is not there right now and we will we able to move forward with that. The brain has the ability to learn new things and new pathways can be grown in and challenged. We don't know what the cause is for the blepharospasm and the dysfunctional pathways.
We know that we can learn things. We know that we can do things today that we couldn't do 10 years ago and we know that the things we don't use we tend to forget. Our brains are exposed to new things every day. Every night our brain sorts through what we've been exposed to during the day and gets rid of some of it and keeps some. That is all part of this process of neural plasticity retraining. We can express the choices that our brains are making while sleeping by what we do during the day: by how we focus on things, by what we prioritize in our mind and, by how relaxed we are.
Learning neural plasticity retraining is very personal. Learning what things to focus on during the day to change those pathways at night basically.
What does it means for us? With blepharospasm we have to remember that it also means that wrong connections can be made in our case, and, that the root cause for each of us may be different.
- Self-repair and organization through specific, repetitive motor activity (eye exercises)
- Practise, practise, practise
- Be “mindful” of when the connections are operating correctly
- The exercises are individualized pertaining to the specific deficiencies we each have
- A key ingredient is reducing stress and being in a relaxed mode
We talked about the neural plasticity piece. Something happened that caused this misfiring, reinforced the misfiring and, over time, whether you had it for six months, six years or 16 years, you have to be able to backtrack and see what works to create the new path. This maladaptive reaction has become our new normal we want to get back to our old normal and progress forward.
So there is not one single cause. Some research has show that, in some cases, the brain of people who have developed dystonia may be extra plastic: in other words, our brains make new pathways more easily, more quickly and with less provocation than the brain of other people.
- In BEB, the old “eyes open” pathway that worked for so many years is not gone nor damaged, just not being used much of the time, because of takeover by a new “eyes closed” pathway
- The brain’s recent memories are of “eyes closed”, so it tends to return to that pathway
The first time Carol saw him, July 2012, she was only the second blepharospasm patient he dealt with. The first was Michelle, in June 2012. Michelle went to Spain and she was very happy with the results and posted it on the bulletin board.
The day Carol saw Dr. Farias in Toronto she was pretty sceptical but on that very first day he immediately pointed out some things about her eyes that she wasn't aware of. She had the same problem as Debi - a random eyeball movement all over the place that she was totally unaware of. The first step for her to be able to control all that was going on in her face was to start controlling the random movement of her eyes and that immediately helped to decrease the urge to spasm.
In addition Dr. Farias helped her to fully resolve the remaining problem she had with her throat. She had mentioned that she was afraid to stop getting the botox injections because she would get huge tension back there and was afraid that if she didn't go get the Botox that by the next week she wouldn't be breathing again.
- Retraining involves focusing attention on ways to encourage the brain to use the “eyes open” pathway frequently enough to change the memories
- It is important to have the right “chemical soup” – the mix of neurotransmitters present during calm and relaxation
- Memories are consolidated during sleep, so we need a lot of it
- Carol’s example of looking at a stick while walking
According to Carol, Dr. Farias has quite a handle on biomechanics and he was checking out where she said that she had the tension and he said that it did not appear to be her throat muscle but rather her tongue muscle. He asked her to start moving her tongue around and then he asked her to find the most comfortable relaxing position for her tongue.
The long and short of it was that by understanding that she was creating the tension in her muscles by a faulty tongue position. Her problem with the vocal chords had already been resolved and this was a different problem so learning that gave her the confidence to skip the botox injections of her throat.
The key to retraining is creating success (eyes open moments). Ideally, one should do the exercise or activity only as long as you can keep the eyes open, then change to something easier. This reinforces the functional pathway.
One goal is to regulate the blink cycle to about every 3 seconds. Stress reduction can often settle the brain quickly.
When Debi had her sessions with Dr. Farias. beside the eye tracking, he also noticed that she had a very disjointed blink response. Up to that point in time she had not had any botox injections for about five months. Dr. Farias was able to identify that. In the next eight months that was one of the most difficult things that she had to do - blink every three seconds for about an hour. That is part of the video training as well is recognizing that your eyes are not blinking on a normal schedule,
For the greater part of our lives we know how to blink. There was a pathway that was working fine and he believes that the pathway is not actually damaged in any way. Dr. Farias believes it is still present and, that it has been replaced by a different dysfunctional pathway that you have the created. It is your job to rebuild the connection between the functional pathway, which is in your brain, and the function of your eyelids.
The way you do that is, if you find behavior that access your eyes-open pathway for even the briefest period of time, you practice that behavior for months and maybe for years. At the beginning it feels so wrong and so uncomfortable. It just feels like absolutely the most uncomfortable thing you could be doing but as you practice it you're strengthening the connections between the pathway and your eyelid function. Eventually it becomes easier and, then, ideally, after years becomes the default and you don't think about it anymore.
- Progress can be slow …6 months to years to regenerate normal eye activity dependent upon how long the condition has been active and how consistently the training exercises are implemented
- The process cannot be hurried because it depends on the individual brain’s ability to reorganize; expect fluctuation
- I am not in charge of the timeline
When you don't have to think about it anymore the amount of energy the retraining takes decreases but as long as everything is still going through your conscious mind it is like learning a new language; very energy intensive.
The attempt to find a way to access the eyes-open pathway is different for everybody and that's where it becomes very individualized. Dr. Farias gives you some ideas about how to access the eyes-open pathway but he encourages his students to use the trial and error method.
In addition to the right behavior you must have what Dr. Farias calls the right chemical soup. Most importantly the neurotransmitters that our brain produces when we are calm and relaxed are the same ones that are going to help our brain build the memories that were trying to teach it to build: the eyes-open pathway memories.
We need lots of sleep because we build a memory during sleep. The sleep time has to be built into ones schedule because if one does not get the required hours of sleep that night the brain would not likely be able to accomplish what it has been accomplishing during sleep.
- Throat has recovered
- No more Botox/meds
- Light sensitivity is mostly gone, especially indoors
- Reading again
- Still working on movement
- Walking improving, not driving yet
- Spiritual growth
- Debi’s Experience
- I continue to have Botox
- I combine the training with a daily meditation practise for relaxation
- Balance is much, much better
- Wind down time of cycle of Botox is increased
Please note: This program works differently for each patient and may or may not be effective for everyone.
Some roles of the coach:
Serves as a catalyst. Observes dysfunctional movements or tensions and makes the patient aware. Suggests personalized exercises. Encourages perseverance when exercises feel very uncomfortable at first, or when there is a lot of fluctuation (2 steps forward, one step back).
Some roles of the patient:
Practices many hours over a long period of time. Incorporates exercises into daily routine. Takes the coach's basic ideas and adapts them to own situation. Learns to relax. Sleeps. Learns to control thoughts.
BEBCRF Inc. is not associated with Joaquin Farias, PhD. It is up to the individual patient should they wish to follow up with this process.