Taking Charge of Your Care

Tips for Being a Proactive Patient

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.

Be Prepared.

Read up on dystonia and treatments, or ask a loved one do help you. The more informed you are, the better questions you will be able to ask. Prepare a list of questions for your doctor or nurse prior to each meeting. It can be difficult to remember each question when a lot of information is being exchanged during an office visit.

Establish Rapport

It is important from the beginning to establish a positive relationship with your physician and health care team. Keep in mind, good teams communicate well. As such, your doctor will have questions for you and likewise you will have questions for him/her too. This is part of a healthy rapport.

Focus Your Questions

Start with your most important questions first. Your doctor wants to answer your questions but will likely have time restraints and limitations due to many patients who require his/her time and attention. Take time to write down or audio record your questions in advance and take them with you.

Know Your Medical History

You will often be asked to recount your medical history. Write this down and always carry it with you. Information to be include should be: childhood illnesses, traumas, and injuries, history of medication use and allergic reactions, family and medical history including cases of dystonia or other movement disorders in family members, onset of menstrual period, menopause, ore pre/post menopause, allergies, other medical conditions.

Build Your Own Record.

You are the center of your care team, and it only makes sense for you to have copies of your scans, x-rays, and test results. Your doctors may refer back to parts of your medical record or you may need them to seek a second opinion. Consider keeping a health journal that includes regular observations about your symptoms and pain, documents the dates and duration of treatments, your response to treatments, and other information relevant to your dystonia and general health.

Have a record of all your medications with you. It is imperative that your keep detailed records of your medicines and complementary therapies, including vitamins, supplements, and herbs.

Remember You Have Choices

You have the right to effective treatment, and to make choices about your health care providers, hospital, and course of treatment.

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