Brenda

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!

My book

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!


Interview with Brenda on CTV EDMONTON

Tom

Tom Seaman’s story

In the summer of 2001, my neck muscles began to involuntarily contract, causing my head to pull to the right. I had no idea what was wrong. My doctors were also baffled. No one knew how to help so my symptoms kept getting worse. I searched the internet like crazy and finally discovered dystonia, a neurological movement disorder. A neurologist specializing in movement disorders made the official diagnosis. It was a relief to know what was wrong, but scary to think of what lied ahead.

By the time I was diagnosed,

I was in extreme pain and disfigurement, and pretty much unable to do anything on my own. My head and neck were locked towards my right shoulder and the muscle contractions significantly worsened with any type of movement. I had to drop out of graduate school, quit my job, and move in with my parents because I had become disabled to the point that I could not function without their help. I felt immense shame.

I tried a variety of treatments,

none of which were of much help. I fell into a pit of depression, became very isolated, experienced severe anxiety and panic attacks, drank alcohol to help reduce the pain and muscle contractions, and had an awful diet. Within 5 years of my diagnosis, I gained around 150 pounds due to my unhealthy, sedentary lifestyle. At well over 300 pounds, I didn’t recognize myself. Life was anything but fun! In December 2006, I caught a stomach virus and was sick for almost 2 weeks. During that time, my dystonia symptoms subsided a little and I lost about 15 pounds. While getting sick was not the type of motivation to change I would have chosen, it was exactly what I needed. It was a wide open window of opportunity and I jumped through it. I knew if I didn’t, I would eventually have more serious health problems.

I changed my diet and began exercising

(for weight loss and to help manage my dystonia symptoms). I changed what I ate and when I ate, I cut back on the amount of food I ate, and I walked everyday. I started out by walking to the end of my driveway, gradually increasing to 2-3 miles twice a day. By October 2007, I lost all the weight! In less than a year I was back to a healthy 185 pounds for my 6’ 2” frame. I also found some effective ways to better manage my dystonia. People often said to me that I must have a much better attitude after losing all the weight. My response was, “getting a better attitude is what motivated me to lose the weight.” My attitude was certainly better and I absolutely felt better about myself, but had my attitude not changed prior, I never would have been so determined to take the necessary steps to lose the weight and better manage my dystonia symptoms. I still have problems with my neck and back from dystonia that prevent me from doing certain activities, but life is so much better! I have maintained my weight and my dystonia symptoms are night and day compared to the horror I once lived. I used to essentially live on the floor, writhing in pain, feeling completely worthless and depressed, unemployed, morbidly obese, and totally dependent on the help of others. I didn’t want to wake up in the morning because I didn’t want to face the constant physical and mental pain.

Now I am at a healthy weight and in much better control of my dystonia

to where I can live a more normal life with passion and excitement. My journey with dystonia and weight issues led me back to school in 2010 where I became a certified professional life coach so I could help others with their health challenges. Then in 2015, I published a book called, Diagnosis Dystonia: Navigating the Journey. I wrote this book to give others hope and inspiration, as well as guidance for how to better cope with a life altering chronic condition. I have been faced with major challenges throughout my adult life. What helps me jump over hurdles is my belief that everything has a solution.

There is nothing that can’t be altered to improve our quality of life. Obstacles provide us with opportunities to grow and become better people, and every day I am grateful for the chance to help myself and others achieve their personal best.


All of my articles on Patient Worthy

All of my articles on The Mighty

Author Facebook Page

Blog