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?


Make Yourself a Priority

Even under the best of circumstances, dystonia is a life-changing disorder that requires management over time. Treatment can be time-consuming and inconvenient. When life gets busy or stressful, it can be tempting to ‘just deal with’ pain, medication side effects, or changes in how you feel. It may be easy to rationalize or ignore new or changing symptoms, delaying evaluation and care. Furthermore, the Covid-19 pandemic dramatically disrupted treatment for many in the dystonia community, including delaying botulinum neurotoxin injections and deep brain stimulation procedures in  unavoidable ways. Listen to your body and reach out to your medical team when you need help. Remember that mental health is healthcare too.

Be Prepared

Read up on dystonia and treatments, or ask a loved one do help you. The more informed you are, the more meaningful 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. If possible, ask a loved one to attend appointments with you to take notes or help retain information.


Establish Rapport

It is important from the beginning to establish a positive relationship with your physician and health care team. Consider your medical team as partners in your healthcare. Clear communication is key. Your doctor will have questions for you and you will have questions for them too. Medical appointments may feel intimidating or uncomfortable at times. You may feel understandably concerned, anxious, or in  pain. Do your best to listen carefully and express your questions and concerns.

Focus Your Questions

Ask in advance how much time you can expect to have with your doctor during an appointment. Your doctor wants to answer your questions and concerns but may have time restraints due to many patients who require their time and attention. Take time to write or audio record your questions in advance and take them with you. Start with your most important questions first. If you are left with unanswered questions following an appointment with your doctor, follow up with a nurse or the admin staff to get  the information you need.


Know Your Medical History

You will often be asked to recount your medical history, which may be lengthy. Have the essentials in a concise written format and bring it with you to appointments. Information to be include may 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, allergies, other medical conditions.

Take Advantage of Patient Portals

Many medical offices are using online patient portals. A patient portal is a secure website that provides you with access to your health information and medical records on the Internet. Accessing your personal medical records through a patient portal can help you be more actively involved in your care. Patient portals can help reduce phone tag with your doctor and sometimes even save a trip to the doctor’s office. Most patient portals allow you to securely view  and print portions of your medical record including recent doctor visits, discharge summaries, medications, and lab results. Other features may include completing intake forms, exchanging private email messages with your healthcare team, requesting prescription refills, scheduling appointments, making payments, and more.

Investigate Telehealth

Movement disorder clinics are increasingly using video conferencing, smartphone apps, and additional telehealth technology to care for and interact with patients. You may have the option to conduct appointments from the comfort of your home. Secure video conferencing can save  you time, energy, and expense from traveling to your doctor’s office.

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 appropriate treatment, and to make choices about your health care providers, medical institution, and course of treatment. Contact the DMRF if you need assistance locating movement disorder specialists for evaluation and treatment, or a second opinion. If you are having difficulty with your health insurance provider covering the treatments your doctor recommends, DMRF may be able to offer resources.