If you’re among the 1 in 6,000 to 10,000 people born with spinal muscular atrophy (SMA), you’ve likely had your share of interventions and therapies. For example, you may have received physical therapy, occupational therapy, dietary assistance, assistive technology, and even speech therapy and respiratory interventions.
SMA is a condition that impacts most areas of your life, which means that you may have a team of people involved in your care. Despite the fact that every team member has expertise in their field, no one knows as much about your particular situation as you do. When it comes to your care plan, it’s important that your voice is heard.
1. Ask questions and learn
No question is too small to ask. Keep a list of the thoughts and concerns that occur to you between appointments, and bring it to doctors’ appointments. Read as much as you can, and keep up with the latest research on SMA treatments. You can ask your doctor about what you’ve read and how it might impact your treatment plan.
Network online with others in your situation. You may learn from their journeys and successes, and discover new options that you want to try.
2. Organize yourself
Set up an organization system that works for you. This may mean involving your loved ones and care team in creating a system to meet your needs. Calendars, binders, or electronic reference tools may be options.
You should always be able to access the key information about your treatment plan, such as contact information for the healthcare professionals on your care team, and the dates and times of upcoming appointments. You may want to ensure there’s a way for you to check details about any medications you’re taking, such as the dosage instructions and side effects to watch for.
3. Request referrals
If you’re recently received an SMA diagnosis and haven’t explored all the treatment options available to you yet, be proactive. Seek expertise in each area of care. For example, rather than discussing general nutrition with your doctor, ask for a referral to a dietitian. If the physical therapist you’re seeing doesn’t have much experience with your condition, see if you can find another one who does.
Never be afraid to seek the highest quality of care.
4. Learn to self-advocate
When you practice self-advocacy, you stand up for yourself by learning your rights and ensuring that they are protected. This skill can also be applied to the management of your SMA care.
You have the right to know more about medical treatments that are recommended, and you can say no to options that you don’t feel are right for you.
It’s also important to know what your medical insurance covers and ask for the full scope of care to which you’re entitled. Ask about clinical trials or studies that you can take part in, or new treatments you can try. Pursue funding opportunities, and make use of disability benefits where available.
5. Join a support group or attend a conference
Whether it’s an SMA-specific group or one that is open to people who have a range of disabilities, finding a community of similarly engaged peers can help bolster your care management strategies. For example, Cure SMA holds a yearly conference attended by many people living with SMA.
Between scheduling appointments or navigating the tricky waters of disagreeing with a doctor, life with SMA can be complicated. Connecting with others who’ve faced similar challenges can provide a measure of reassurance. It may even reduce your stress levels. Difficult decisions are also easier when you network with people who’ve been in your shoes. Don’t be afraid to reach out and ask for advice.
6. Get extra help
If you’re an adult living with SMA, maintaining as much independence as you can may be one of your primary goals. However, if you deplete your energy performing day-to-day tasks, you may not have the energy to maximize the benefits of self-care activities such as therapy or exercise. Consider asking for help with such activities as cleaning and meal preparation. Be sure to utilize home support services when they are available to you.
If you have SMA, you likely have a care team made up of professionals from several different specialties. Although your care team has important expertise, you are ultimately at the center of your treatment plan. You can have a voice in your own care by being proactive and asking questions. Learn to self-advocate, and always remember that you deserve the highest quality of care.