Living With Dystonia - “My Life A Beautiful Mess”

An active mother and a regular fitness competitor, Brisbane mother Sharon Easdale was a fit and healthy woman. That was until a sudden onset of fatigue and pain left her facing a diagnosis that is rarely spoken about. The dystonia sufferer is now striving to increase public awareness of her incurable condition and shares exclusively with Oxygen how she refuses to let her disorder control her life.

Nicholas Hastie

A seemingly healthy woman, Brisbane mother Sharon Easdale was diagnosed with multi-focal dystonia at the age of 32 – a brain disorder that causes muscles to contract involuntarily throughout the body. Twelve years on, Sharon often experiences abnormal posture, twisting and repetitive movements, and while dystonia isn’t fully understood yet, it’s her mission to do more to increase the awareness of the condition.

“My first signs of this illness were the overwhelming pain and fatigue. I was 32 years of age. I was a regular in the gym and had competed in Bodybuilding Miss Figure/Fitness competitions,” explains Sharon. “The leg pain was incredible and the fatigue so chronic that I would need to sit down even when doing simple chores in the house.”

Her symptoms would continue, and quickly worsened.

“One Sunday night, I had a random severe breathing attack. I could not catch my breath and my lips went blue as I fell weakly to the floor. I was rushed to the hospital, but tests showed nothing abnormal, although one treating doctor said that it could be the start of something that is yet to present itself,” Sharon says.

Prior to her diagnosis, Sharon enjoyed competing in bodybuilding, figure and fitness challenges and lived a healthy and balanced life. After the onset of her symptoms, 12 years of trying to determine a diagnosis and finally controlling this brain disorder (to a degree), Sharon now manages her symptoms through fortnightly hospital visits, injections every 10 weeks and medications to support her quality of life.

Despite her best efforts to slow it down, the disorder showed no sign of improvement and her symptoms worsened again.

“One night I was lying in bed and I could feel my body shaking, as in a tremor, much like we see with Parkinson’s sufferers. I instantly woke my husband to get him to check if my head and body were shaking. It happened again as I was leaving my neurologist’s office and after various tests, I was eventually diagnosed with dystonia.”

Regular breathing attacks, severe neck tightness, speech difficulties, body twisting, an inability to walk, spasms and jaw clenching are only a few of the challenges that Sharon must face on a daily basis; and these are only the noticeable symptoms.

“The invisible signs include depression, headaches, lightning bolt/electrical current-type strikes within my head, anxiety, vision problems, difficulty concentrating, social withdrawal and memory loss,” Sharon says. “The tightness in my neck is the worst pain. It’s so severe, I liken it to the feeling of being hooked up by the base of my skull and slowly being turned and twisted in a circle.”