I Was In Denial
When first diagnosed I was in denial. I didn’t want anything to do with anyone who had this condition. One of the first articles I was exposed to, before my dystonia had progressed, read dystonia “is an extremely painful, debilitating disease”. That really scared me. Looking at pictures freaked me out. I am ashamed to say, but in the beginning I thought, I, and everyone with it, looked like a freak. I had very derogatory names for myself. I was scared of what I was becoming and how I would end up. I didn’t want to be like this or them. Talk about defeatist talk.
By the time I attended the San Antonio symposium the passage of time (and help) had allowed me to come to terms with my condition a bit more. I couldn’t believe the outpouring of support I was given. Such caring people shared their experiences and genuinely wanted to see me get better; Sandy who had successful DBS, Wendy, Barry, Cheryl, Marita and Pam who had successful SPD (Selective Denervation Operation), Britta, Karen and Emily who had successful experiences with Abby Brown and other methods, and others who were doing fine with botox.
I wondered why people who now felt better still went to the symposium. I chalked it up to,
- The symposium being so high class with awesome food
- Seeing a new part of the world
- Making new friends and catching up with old friends
But there are even better reasons,
- Something new IS learned every year
- Rather than fearing being surrounded by others with dystonia, having my suffering shoved in my face and being overwhelmed by feelings of hopelessness, I felt like a normal person. I thought the phrase “You Are Not Alone” sounded so cliché, but once at the symposium it felt true. The condition is not heard of by most, the medical community often misses its diagnosis, and what is more heart breaking is that family, friends and colleagues often don’t understand how it affects us psychologically, socially, let alone physically. At the conference I was understood and I didn’t realize how much I really needed that.
- Having a family member or friend attend the conference is helpful. It’s forgotten how much they are affected by our condition. Besides learning, they need to know they are not alone either.
- If the people who were feeling better (and not better) did not attend the symposium it would not be as beneficial. Having the opportunity to speak to individuals IN PERSON is invaluable. For example, previously I only skimmed articles about surgery. I dismissed the information as not for me. Seeing and talking to others who had successful surgery made it more tangible. Now I hope to have SPD with Dr. Arce. It helped to hear the professionals first hand, but talking to others with dystonia was the best part of the conference. So, thank you to everyone who keeps attending and sharing your stories.
- Lastly, I have a good directory of people I can contact if I need a shoulder to cry on, talk or share information. Perhaps creating a data base of peoples’ names, contact info and a short list of what has helped them would be beneficial.
In retrospect, I now know I had a brief bout of dystonia in 2000. I was having trouble talking to people on my right because I couldn’t turn my head. I was asked if I had a sore neck. I said, “I guess so”. But I remember thinking it must be anxiety because I hadn’t injured my neck and it felt more like tension.
We are left to hypothesize why we developed dystonia. I have learned from Dr. Farias that it can be triggered by the perfect storm of individual physical and emotional traumas laid on top of each other. For me perhaps,
- A genetic predisposition: my mother and maternal grandfather have head tremors at times
- January, 2013 before the symptoms started, I started lifting heavy weights at the gym aiming to build strength. I had a strange stiffness in my neck. It didn’t feel like I had injured it but I also had numbness in fingers. I figured I had to improve my neck posture when lifting.
- May, 2013 I was on top of the world. I had landed employment in a specialized area of my field after completing a number of training courses to supplement my Masters Degree. I loved my work. But even good stress is known to be stressful
- A week later, in June, my step-mother passed away; I thought I was coping.
- My father was having a difficult time dealing with her death and his distress fell on my shoulders. Despite crying whenever speaking with him, I thought I was coping
- Also, my daughter was having difficulty transitioning between high school/university/and discontinuing her studies. I had this deep, visceral worry about her; I thought I was coping
- April 2012: encephalitis
- September 2013: Strep Throat (Read link with movement disorders)
- For several months in 2013 I was doing lots of typing
- Repeatedly attempted to get up on water skies; would not let go until after 7 tries
- Strained my eyes trialing multifocal contacts for 8 months
- Hormonal changes
I suppose it doesn’t matter what caused it because once it’s developed you have to manage it. But perhaps if we developed a data bank of what each of us thinks contributed we could find common threads which may lead to determining causes and preventative education.
1 year and 5 months went by between developing neck tension at the gym and getting a diagnosis. Another 5 months until my first botox injection. My symptoms had gone from a stiff, tense neck to tremoring to twisting. When my head began to tremor more and more I sought out psychotherapy. I had self-diagnosed. I thought I was having a weird form of anxiety. But the strange thing was I wasn’t feeling anxious or like I wasn’t coping and I was really enjoying my work. I thought the tremoring must be me subconsciously losing a grip on coping with issues with my Dad and daughter. I went to four different counsellors trying to find the right fit and hoping that the tremoring would stop if I just worked out whatever was supposedly bothering me. It didn’t help. The more tremoring and twisting, the more anxiety; a viscious circle. My brain was receiving abnormal proprioceptive information from my neck, and my brain went into panic mode. I was scared and confused. It felt like my body had a mind of its own. In the beginning the twisting was minimal but what people didn’t understand was that it didn’t feel minimal to me. I couldn’t shake the insecurity associated with the physical symptoms. People would say “you’re blowing things out of proportion, just get over it”. I wanted to. But that didn’t seem to matter to my logical brain. I could not over ride my brain’s fear and distress no matter how I tried. And the comments were not helpful. I just felt more alone and odd. I was angry at them for not understanding and angry at myself for not getting better. This experience was so new to me and so unwanted. I felt like it was stealing me away. I lost all self-confidence at work. The whole time I was blaming myself. A few colleagues, friends and family were supportive. The worst thing people could tell me was to stop holding my face. They didn’t realize that it was a common sensory trick used to stop or reduce the torqueing. Since my dystonia has progressed, I have to forcefully use my arm to keep my head in place. If I let my head go to its limit of twisting it is unbearable.
In January, 2015 I could no longer stay in the job I loved. I wanted to, but it wasn’t possible. I was devastated. Not only was I dealing with a progressively worsening condition and trying to find help, I was no longer able to continue working.
Before I left work, and after, I had been trying many forms of help counselling, massage, physio (including mobilizations, stretching, intramusclular stimulation, sympathetic nervous system downregulation and parasympathetic upregulation), osteopathy, Dr. Farias’s technique, craniosacral therapy, chiropractic medicine, naturopathic medicine, switching off my Vegan diet to a more moderate diet, homeopathic medicine, meditation, pain meds, quantum physics, Ester Hicks, Qi Gong, swimming, yoga, cupping and reflexology. I still use some of these methods to help cope. I even went for a consult with an Ontario dentist who treats dystonia due to TMJ.
As far as botox, it hasn’t successfully managed my condition. It helped in that I am no longer laying flat on my back, crying in pain and frustration. But everyday activities are still very difficult; shopping, driving, carrying, cooking, laundry, walking, standing, sitting, computer. I no longer lift weights or run. My neck is still severely torqued and unbearably painful if I don’t support my head and let it to go to its end range. My elbow and hand are now affected from wrestling the great force of the spasms. What is most disconcerting is I have been offered a job. But because my condition has progressed it is impossible for me to do at this time. The employers are very compassionate and they said they would wait until I get better. But I really don’t think they can wait too long. I also decline activities with a lot of stimulation. It aggravates the dystonia and it’s too much work to control. It is sad to miss so many social activities now.
In Canada our health care is free. In order to pursue SPD in the States I had to apply to the Ministry of Health for approval. My application was denied November, 2015. There is an appeal process but it requires an Ontarion neurosurgeon to support my application. It can take 1- 2 years to be seen. The other option is crowdfunding. I know it’s peoples’ prerogative to donate but I feel embarrassed about asking. But it may be my last resort. I don’t want to live like this. It has been three years since my neck has become stiff while at the gym, it has been a very rough road, but I am less self –conscious and keep smiling. And because of going to the symposium I have hope that I will get the help I need.
Contact Howard for my email and phone #.
I've found your web site the most helpful of them all. The way it's written really has helped me. Kristi, New Zealand