Saturday, April 30, 2016

Self Help for Dystonia

I am finding this dystonia website incredibly helpful and wanted to share these techniques. It is easy to understand in theory, but different in practice when you have dystonia. It is so easy to get caught up in the moments of distress and anxiety. I can tell when I am stressed and frightened immediately because my shoulders turn to stone and my head starts to tremor.
This page provides information on stress innoculation techniques that can help cope with dystonia. If you'd like information on other aspects of managing dystonia such as getting the best out of treatment, taking care of the body and managing the feelings associated with dystonia click here for our managing dystonia page.
Click here if you would like to read a PDF of this page
At present, dystonia remains a difficult condition to treat. Many dystonia sufferers have to continue their jobs and daily responsibilities, and at the same time try to cope with their condition. The stress inoculation techniques described in this article were originally developed by Dr Meichenbaun and others in America and have been successfully used by many individuals to cope with a variety of stressful situations.
The value of these self-help techniques for dystonia sufferers was assessed in a project carried out by Marjan Jahanshahi and Professor David Marsden, which was partly funded by the Dystonia Society. The results suggested that the use of these techniques helped dystonia sufferers cope with their illness in everyday situations. We hope that regular use of these self-help techniques will be of value to you.
Topics discussed are (click to go to topic):

 

Stress inoculation

The technique that you will be using to cope with your dystonia is called stress-inoculation. The idea behind stress-inoculation is that in the same way that people can be inoculated or vaccinated against physical illnesses such as polio, they can learn to cope with stress if they are adequately prepared for it beforehand.
Why stress-inoculation is useful for people with dystonia
Dystonia is considered to be a neuromuscular disorder and not a psychological one. However, living with a chronic physical disorder, especially one like dystonia, which can make you look different, can sometimes give rise to feelings of apprehension, anxiety, fear, hopelessness and helplessness. Also, as you probably know from your own personal experience, the severity of your dystonia is often affected by psychological factors. Think back on those occasions when you have been under stress and remember how your dystonia seemed to have become worse.
When you first learned of the nature of your disorder, it was quite natural to have gone through stages of shock, anger (why me?), despair and depression. But then acceptance of the disorder must follow. The evolution through these stages may take some time but you must work positively towards the stage of accepting your disorder and seeing how you can get around it in your everyday life. Stress-inoculation aims to help you come to terms with your torticollis and learn to cope with the difficult situations in your everyday life, when your dystonia seems to get worse.
What will stress-inoculation involve?
•    "They will think I look bizarre." 
•    "My life is ruined." 
•    "What have I done to deserve this?" 
•    "I cannot tolerate this pain any more." 
•    "My future is hopeless."
Do you recognise any of these statements, or equivalent ones, as similar to your own thoughts? What a person thinks or says to himself has a major effect on how he feels and acts. The above are some of the self-defeating statements that you may be saying to yourself, without being aware that you do, which interfere with your functioning in everyday situations. Learning to overcome such negative thoughts will be one of the aims of stress-inoculations.
Most people have to face up to and cope with difficult and stressful situations in the course of their lives. Successful coping with stressful situations involves a number of stages:
  1. Preparing for the stressor
  2. Confronting the stressor
  3. Temporarily feeling overwhelmed by the stressor
  4. Coping with the stressful situation and rewarding oneself for having done so.
Whatever the stress producing situation (for example, speaking in public, eating in a restaurant, etc) you can help yourself through each of these stages by using a number of techniques that you will learn in the course of stress-inoculation.
The techniques that you are going to learn to help you cope with stressful situations are as follows
  1. Identifying your negative self-statements or thoughts and replacing them with alternative positive ones that will prepare you to meet the challenge of the stressful situation.  
  2. Identifying the first physical signs of apprehension, anxiety and fear, which may consist of increased tension in your muscle, heart pounding, breathlessness, flushing, 'butterflies in the stomach'. Then, as soon as you detect these physical symptoms, responding by quick physical relaxation using the method of diaphragmatic breathing.
  3. Learning to replace continuous thinking about past events and worrying about what may happen in the future by relaxing mentally through the use of pleasant imagery.
During the four stages of dealing with a stressful situation described above, you must learn to notice any self-defeating thoughts that enter your head and the accompanying physical signs of apprehension or anxiety. You should use these as a reminder, or 'bell-ringer' to use positive self-talk, diaphragmatic breathing, and pleasant imagery to help you cope with the stressful situation. The success of this method mainly depends on regular practice of the techniques of stress-inoculation that will be described in more detail later. Read through the rest of this article until you are completely familiar with the techniques and then put them into regular (at least twice a day) practice in any situation where your dystonia is especially problematic. 

Free Guided Meditation Class by Ana Forrest | Forrest Yoga

Tuesday, April 26, 2016

Music over Meds....


Dancing with Dystonia


Federico Bitti 

Born in Rome in 1974, at the moment he's working as multimedia journalist for Repubblica.it website.
From 2007 he's suffering from a movements disturbing rare disease called Cervical Dystonia that's deeply affecting his life and his career. After the suitable treatments and the refuse for a neurosurgical operation he's experiencing an innovative treatment conceived by a Spanish expert in biomechanics in Toronto (Joaquin Farias). This treatment is based on the usage of movement, dance in his case, to retrain his brain retrieving movement capacity and get a correct posture.

This talk was given at a TEDx event using the TED conference format but independently organized by a local community.

Saturday, April 23, 2016

Dr. Matthew Antonucci Explains How my Brain Perceives Gravity.


This is the MARC Chair  ( Multi Axis Rotational Chair) at Plasticity Brain Centers in Orlando, Florida. 

Dr. Antonucci explains how this chair will help improve my symptoms and how they were able to target where my dystonia is stemming from in my brain. 

Thursday, April 21, 2016

Medical marijuana approved conditions in PA

PENNSYLVANIA QUALIFYING MARIJUANA PATIENT CONDITIONS

cancer, glaucoma, HIV/AIDS, ALS or Lou Gehrig's disease, Parkinson' disease, multiple sclerosis, damage to the nervous tissue of the spinal cord with objective neurological indication of intractable spasticity, epilepsy, intractable seizures, inflammatory bowel disease (IBD), Crohn's disease, neuropathies, Huntington's disease, sickle cell disease anemia, autism, neuropathic pain, post-traumatic stress disorder (PTSD), or severe chronic or intractable pain that is untreatable

Sunday, April 10, 2016

I'm leaving on a jet plane......

Today my family and I are leaving for Orlando, Florida for my next evaluation at Plasticity Brain Center with Dr. Matt Antonucci. I am hopeful and excited about the next step in my journey. I will try to share as much as possible about my treatment and experiences there.

Wednesday, April 6, 2016

My Story- Continued...

On my oldest son’s 20th birthday-January 21st. 2015, I flew to Georgia to the Carrick Brain Center. I had an early flight and went from the airport straight to the Brain Center. (which in hindsight was a terrible idea...I was trying to save money and ended up totally exhausted.)

I was taken in at 10:00am and introduced to Dr. Nathan Keiser and Dr. Angela Gabella.They would be the primary doctors that I would be working with and several other doctors would assist with preliminary testing. They did a series of extensive testing on my eyes, coordination and balance. They also watched me walk to see if I had gait abnormalities and had me do a series of coordination tests. After that, I went and got some lunch and came back to get the test results. After getting the results(which were shown to me with videos of my eye movements and graphs and charts and definitely makes more sense to the doctors than the patients) I took a break and went to check into the hotel. At 3:00pm I did my first round of targeted eye exercises. After that I went back to the hotel to rest and planned on having dinner but ended up getting very nauseated. I think it was a combination of stress, the testing and exhaustion all hitting me at once. For the rest of the week I would go to the center three times a day and work with the doctors doing these exercises and they would monitor my progress. The care and compassion that all of the doctors extended to me as well as other patients went above and beyond any traditional medical visit I had ever experienced. The passion and dedication to what they are doing was so inspiring and amazing to be a part of. I have wished so many times that I never got this disorder, but then I think about the experiences I have had and the amazing people I have had the chance to meet. Always try to look for the seeds of opportunity in suffering, right?  By the end of the week they felt I was making progress and sent me home with a series of exercises that I would do three times a day. They suggested swimming and yoga or tai chi as well as deep breathing and meditation. Anxiety is a huge part of dystonia flaring up, so it is very important to stay calm and cool. It is almost impossible at times, but I keep on trying.

I was due to return to work the second week of February 2015 or else I would lose my family’s health benefits as well as the income we were now losing since I took medical leave. I was also due to start repayment on my student loans that exceed 50K. Avoid stress? Stay calm? Yeah, right!

I was still able to drive if I did sensory tricks by holding my left hand to my left cheekbone and pushing on it, but really I was starting to feel like a hazard to myself and others. My head tremors were the worst in the car. I started swimming 3 times a week by holding a kickboard and doing laps to strengthen my core. Getting out of gravity in the water felt good, but as soon as I was back on land I felt terrible. I forged on and went back to work in February where everyone was so amazingly supportive and helpful. I tried to fight through the pain everyday and did OK for about 3 weeks and then I felt like I was getting progressively worse. I tried another round of BOTOX in March and was hoping that would help ease the pain but it actually made it worse and my body was failing me. One day at work I realized I was walking down the stairs with my face pressed against the wall and walking sideways. I was so dizzy and had a hard time focusing. At home I was trying to hide the fact that my right hand was trembling. My neck was so twisted that it was pinching nerves so that my left arm felt tingly and numb and at it’s worst I could not touch my left fingers to my thumbs. I used to play guitar so that was tough to fathom. My chin was stuck to my left shoulder and therefore my body’s muscular system was all out of whack and not working properly. I made it six weeks at work then asked to take another medical leave and made an appointment to return to Georgia. I also filed for disability. I figured I should hope for the best and prepare for the worst. When I told them how quickly I was regressing they wanted to see me as soon as I could get there. I just did not want to admit or accept how truly sick I was.

Saturday, April 2, 2016

My Story, Continued....

After visiting the movement disorder specialist  I decided to get a second opinion. My best friend's sister recommended a doctor in Greensburg Pennsylvania that was called a functional neurologist. I had never heard of this type of doctor and started to do some research and figured it was worth a shot. She told me he had been helping her son with his concussion symptoms and specialized in vertigo, concussions, and traumatic brain injuries. Functional neurology does not use drugs or surgery. I called their office and told the nurse about my situation and Dr. Shine personally called me back and say he would do his best to try to help me. (How many doctors do that?) The next week my father drove me there to see if this would be an option for me.

My first examination with Dr. Shine had me skeptical, yet hopeful. He did a series of tests and therapies using eye movements. He also has a hyperbaric oxygen chamber that I went into for an hour.  He said if he couldn't help me he knew a place I could go where they possibly could. That place was the former Carrick Brain Center in Marietta Georgia.

A few weeks after I started this treatment with Dr. Shine I also had the Botox injections done.  I had 30 small shots injected into my neck and shoulder. I was so desperate for pain relief that I would have tried anything. Here I was, 46 years old with my Dad holding my hand while I’m crying and getting shots at the doctor. I looked up at my dad and he was crying. I felt like I was 12 years old. This was ridiculous. The actual injections were not that painful so if you are considering this option it sounds worse than it actually is. We tried to celebrate Christmas normally and make it fun for my younger son, but it was hard for me to put a smile on and fight through the pain.

After a few weeks I started to feel a slight shift in the way I was holding my head and the level of pain. It was still intense but not nearly as bad as it had been. Now we weren't sure if it was the Botox working or the treatment I was receiving from Dr. Shine. After a few weeks, Dr. Shine, my family and I had decided to make an appointment at the Carrick Brain Center to see if they could help me. While Dr. Shine felt we were making progress, he wanted me to get the proper testing and diagnosis using the technology and treatments they had at the former Carrick Brain Center. The cost was $1000.00 a day but I felt that if I could go there and they could help me get back to work it was worth every penny and could pay it off in a few months..

Everyday I was struggling to make sense of what was happening to my body and my mind. I would wake up and forget that I was sick and as soon as I stood up my body would be screaming in pain.  All I could do was worry about the future. Was I going to end up in a wheelchair? Was I going to live the rest of my life in excruciating pain? I was so angry and so sad and felt so incredibly helpless.I felt like I was drowning and looking for anyone to throw me a lifeline. I had basically been taking care of myself since I was 18 years and I could not believe this was happening. I had not yet reached the level of acceptance that you need to face this kind of chronic illness.