- Cervical Dystonia / Spasmodic Torticollis
- Interviews
Kim's interview
How did all start?
Shoulder and neck pain with difficulty turning neck. Headaches and fatigue
Do you already have a diagnosis? How long did it take you to get it?
Took 3 years to get diagnoses as physicians were treating for bulging disc. After no success with nerve ablation, steroids and nothing seemed to help then was sent to neurologist.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Neurologist
What has been the most useful thing for you so far?
Botox and regiment of medications for neurothopy, muscle relaxants and gentle pt.
What have been your biggest difficulties?
Driving with neck stiffness, planning to go anywhere with any onset of spasms. Isolation and at times depression.
How has your social and family environment reacted? Have your social or family relationships changed?
Changed dramatically! My husband and I use to be very social and spontaneous creatures. Now it takes time, energy and times of self care so to cancel. Grown children are somewhat understanding yet just starting to really ask questions. Friends.. well, you learn quickly who your true friends are when health conditions arise.
What things have you stopped doing?
Working, socializing and being the go to person for everything. Have stopped beating myself up for the new way things are and stopped expecting my body to cooperate with what my mind wants.
What do you think about the future?
Scary at times as cervical dystonia is becoming more segmental. Preparing by aligning my home to fit my needs to not become dependant on others.
So far, which years have been the best years in your life? What have you done during them?
My best years of my life was raising my children. Working and feeling accomplished. Now I'm remarried, children are grown and enjoying the time to see my children as parents.
What would you like to do if you didn’t have your condition?
Travel more, fish more and finish the degree that I never finished when a young marriage with children.
If you had to describe your life in a sentence, what would it be?
Wouldn't change a thing.
Finally, what advice would you give to a person in a similar situation?
Find at least something daily you want to do. Keep it simple. Educate yourself about having dystonia. Not a death sentence so enjoy what you can.
