Taking Charge of Your Care
Taking charge of your treatment means being a proactive patient. Being a proactive patient means asking questions. You have a right to fully understand all of your treatment options and any potential side effects associated with your choices.
• What is my diagnosis?
• Is my dystonia early (childhood) onset or late (adult) onset?
• Is my dystonia isolated (primary) or acquired (secondary)?
• Does the dystonia appear to be associated with another neurological or metabolic disorder?
• Should I consult a genetic counselor? If so, what can I expect to learn?
• Has the dystonia spread or changed? If yes, how?
• What can be done to treat or address [insert specific symptom or problem]?
• What is the goal of treatment? What are my treatment choices? Which do you recommend for me? Why?
• What is the prognosis? To what degree can I expect my dystonia to lessen or improve?
• What are the expected benefits from each treatment?
• What are the risks and possible side effects of each treatment? How can the side effects be managed?
• Will I have pain during my treatment?
• What should I do to prepare for treatment?
• How long will this course of treatment last? How often must it repeated or re-evaluated?
• What are the brand and generic names of the drugs I will be taking?
• How will I know if the treatment is working?
• Will I have to have my blood checked periodically?
• What are the symptoms or problems I should report right away?
• What are the chances my dystonia will worsen?
• Will I have to change my normal activities? If so, for how long?
• What is likely to be the impact on my ability to work or take a vacation?
• What is the treatment likely to cost? Will my insurance cover the costs?
• What new treatments are under investigation? Am I a candidate for a clinical trial?
• What is the best time to call you if I have questions? Is there always someone on call in your office if I have a problem during the night or on weekends?
• What resources are available to me to help me cope with my dystonia?
A proactive patient is one who has dedicated themselves to living well with dystonia. Below are some tips for take charge of your care.