How to talk to your SMA doctor about changing your treatment
Last updated Sept. 30, 2025 by Agata Boxe
If you have spinal muscular atrophy (SMA), your treatment needs sometimes change over time as the disease can look different at various stages of life, and your goals or priorities may also shift with age. Starting an SMA treatment change discussion with your doctor can be intimidating. You may feel hesitant about having that conversation, wondering whether you will be taken seriously.
Noticing new side effects, feeling that your current plan is no longer meeting your needs, or hearing about a new therapy you’d like to explore are all valid reasons to talk with your doctor.
Understanding how to talk to your SMA doctor and applying SMA patient communication strategies can help you as you work together with your health provider.
Why communication matters in SMA care
Communicating clearly and honestly with your doctor is essential because they can act only based on what they know.
While test results and other medical data play a crucial role in SMA diagnosis and treatment, your lived experience is just as important. Your doctor may see you only for short visits, so they rely on you to share what your daily life with SMA looks like.
Open dialogue builds trust and can bring you and your care team closer to a personalized treatment plan that works best for you. Being open may also help reduce stress and give you more confidence and reassurance that you’re being heard.
Preparing what you want to say
A key component of an SMA treatment discussion guide is preparing for your appointment to help you feel more confident.
Some suggestions:
- Keep a journal of your SMA symptoms, potential side effects, and daily challenges. If writing is difficult, try using the notes app on your phone or a voice recorder, or ask a caregiver to write things down.
- Identify your treatment goals, such as those related to mobility, independence, and comfort.
- Prioritize your top two to three talking points for the appointment.
Overcoming the fear of speaking up
Even with careful preparation, speaking up can be difficult, especially if you are shy or introverted. You may also not want to offend your doctor or you may anticipate feeling rushed during your appointment.
But there are ways to try to overcome these fears and concerns. Remember that doctors often expect and welcome questions because they want you to actively participate in your own care. They understand the value of self-advocacy.
Some suggestions for boosting your confidence include:
- Send questions in advance: Use your patient portal to share your main concerns before the appointment so your doctor has time to prepare.
- Write down what you want to say: Review your journal of symptoms and daily challenges to determine which issues you’d like to address and which questions about SMA treatment changes you’d like answered.
- Rehearse what you want to say: Practice with a friend or a family member to help ease some of the anxiety.
- Bring a support person: Having a caregiver, friend, or family member present can help reinforce your concerns if you get nervous or forget something.
Sample script for starting the conversation
You may want to craft and practice a few phrases to help you navigate the conversation.
Some ideas for an SMA doctor conversation script include:
- “I am not feeling great these days, and I was wondering whether adjusting my treatment might help.”
- “I recently heard about a new SMA therapy. Can we talk about whether it might be an option for me?”
- “I would like to focus on improving my comfort and independence. Is there a treatment that might support this goal more effectively?”
- “I want to make sure I’m managing my SMA the best I can. Can we assess how well my current treatment is working and consider other options?”
- “I appreciate your care and expertise. I’m also interested in hearing another perspective on my treatment plan. Could you recommend a specialist for a second opinion?”
You can adjust the wording as needed or use your own words. The most important part is to begin the conversation.
Advocating for yourself beyond one appointment
Communication is an ongoing process that begins with your visit and that should continue as your needs change.
Don’t be afraid to follow up by email or your patient portal after your appointment. This can be especially helpful if you forgot to mention something important or want clarification on something you didn’t fully understand during your visit.
Finally, remember that speaking up is part of taking charge of your SMA care. Think of communication with your care team as an ongoing partnership. Your voice matters in treatment decisions, and you have the right to advocate for yourself.
SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
