Hi! My name is Brenda Currey Lewis.
Being diagnosed with Dystonia Musculorum Deformans, or Generalized Dystonia for short, was quite daunting to say the least! It is a neurological movement disorder that I had never heard of. I was seven years old in the summer of 1974, the year my symptoms emerged. We were grateful to have a diagnosis within 5 months, which is rare, for it can take years. Fortunately my pediatric neurologist had seen a few cases and recognized the telltale movements. When my mother was told I had this rare condition she told the doctor that she didn’t know whether to laugh or cry because she didn’t know what the future would hold for me. My doctor told my mom that she could laugh because it wasn’t a tumour and it wasn’t deadly. Well, she could laugh but not very hard because the future was going to be quite the battle. I was a textbook case. I was between the ages of 5 and 14 and it started in my lower limbs and progressed upward.
My right foot started to turn inward
and twist behind me when standing and trying to walk, my knee was drawn up to my chest at an awkward angle when sitting. My right arm was being pulled and twisted behind me, my hand was a clenched fist. Medications were giving me little relief so within less than a year of onset, with no other options to take, my doctor recommended I have a form of brain surgery, called a thalomotomy. It might help. My right side was wracked with tight twisting muscles I could not control, sitting was difficult, walking was awkward and laborious and I had trouble sleeping among many other things. This surgery would involve putting a probe from the top of my brain to deep inside to the small region called the thalamus. The surgery seemed scary and risky and I would need to be awake during some of it. Although it was a terribly hard decision, I needed relief so my parents made the decision to go with the surgery.
By the age of 9,
I had had 9 brain surgeries. The surgery held risks but all surgery does. The odds were only 2 – 5 % that something would go wrong which seemed pretty small. Well, two of them resulted in complications; a stroke on my right side and another produced spasms and tremor in my left shoulder, arm and hand. My left arm was my only limb that was unaffected before this procedure to benefit the left side. The stroke has been a godsend because it has taken away the dystonic movement but my left arm continues to shake and tremor but I have gotten it somewhat under control.
When it was quite clearthat brain surgery could not continue
since it either did nothing or produced complications, it was time to focus on the lower extremities and the effects it was causing. My inner thigh muscles were pulling my legs together like scissors. They cut those muscles which kept me in full leg casts for 6 weeks! Two years later they broke and reset my left femur for it was growing inward. Another body cast for at least six weeks! Note to doctors: Do not cast dystonic limbs (my opinion only)! Confining my muscles like that was the wrong thing to do! Even though they were casted didn’t mean the muscles would agree with it. The casting caused me problems but short term ones. I’m glad I was young at the time because I don’t think I could handle any of those scenarios any better today! Today my foot still clenches, much like my right hand had clenched, my knee and hip are forever straightening and twisting and my back is curved and twists to the right.
My medical history is very long and involved.
For years my mom encouraged me to write a book about my life. I knew that living with dystonia was far from normal but I pushed that thought to the back of my mind and lived the only way I knew how. I never considered writing about it until I really took a look at my past. I conclude: what a bizarre and multifaceted disorder I have!!! I have been the president of the local Dystonia support group for more than 20 years now and realized that I should write my story in the hopes of raising awareness for the many people who suffer from this disorder, mostly the un or misdiagnosed. I keep my limbs as flexible as possible. At this time, after more than 40 years, I do not have pain although many do. My body has great resilience!
describes the good, the bad and the challenges of my journey but it also combines stories of the wonderful people I have met along the way and a little bit of my quirky humour and unique situations that have made me who I am!!!
I’ve never felt confident in giving advice as to others with this disorder because everyone is different and what helps one does not help another so I decided that telling my personal story through a memoir was the best way to go. A Twisted Fate: My Life with Dystonia tells of one person’s journey that some will relate to in part of my story and not others. There are many excellent resources listed on this website so I hope that along with my own you will want to check them all out!