Stick with it: Unpacking the benefits of consistent treatment
For people with spinal muscular atrophy (SMA), it is important to be consistent with treatments such as medical visits, medications, and physical therapy to help manage their SMA symptoms, maintain mobility, and enhance their overall quality of life.
That said, the unpredictable nature of SMA symptoms and the disease’s progression can lead to frustration for many and make it a struggle at times to follow the treatment plan.
Typical obstacles to consistent treatment may include a perceived lack of communication with doctors and other members of your healthcare team, along with mobility challenges, work-life demands, and the distance you have to travel for medical appointments. Other common difficulties include financial constraints and issues with insurance coverage.
To maintain consistent treatment, it’s important to be in regular contact with your healthcare team, stay connected with your support network, and make self-care a priority, including your mental health.
Emily Jones, a licensed physical therapist assistant working in Fort Worth, Texas, says she sympathizes when a person with SMA puts part of their treatment plan on hold.
For example, they might not have enough insurance coverage for a full year of physical therapy, she says, or they might have to travel a long distance for treatment from a therapist knowledgeable about SMA, as there is a shortage of physical therapists who are familiar with the disease.
For other people, it may be motivated by wanting to avoid a particular treatment for SMA symptoms, such as undergoing a spinal tap, or they might be having a hard time with a medication due to its side effects.
Depression, anxiety, or feelings of hopelessness also may interfere with maintaining the motivation to follow your treatment plan.
Jones advises working through the obstacles and finding a way back to getting consistent treatment. This might mean doing online medical check-ins to cut down on travel or asking your doctor to switch you to a different medication that has fewer side effects.
Above all, check with your healthcare team about your progress. If you’ve been living with SMA for years, you may feel like you’re not seeing immediate results from your medications or physical therapy, Jones says.
“It is important to be consistent so you can continue to work on your goals and have open lines of communication with your therapist. If there is no consistency, there will be no way to know what is helping or not helping,” she says. “The treatment is working as long as you are experiencing less pain and you are seeing some improvements in your function.”
Another roadblock to sticking to your treatment schedule is not understanding why your doctors put you on a particular treatment plan. The science behind SMA therapies continues to evolve, and there are now two federally approved medications and a gene therapy, with more treatments in the clinical trial stage.
For this reason, it’s important to ask questions about your prescribed medications, therapies, and any suggested lifestyle changes.
Amber Bosselman, who was diagnosed with SMA type 2 at 18 months old and has her own business as a disability life coach, says she depends on her neurologist and extended healthcare team to help keep her on track.
“I rely on my doctor to know what’s changing in the field of medicine in SMA,” she says.
Prior to starting Spinraza (nusinersen) five years ago, she was nearing the point of needing a feeding tube, due to her difficulty swallowing food. Now, she doesn’t have to worry about how she prepares her food or what she eats.
Bosselman’s healthcare team also helps her worry less about SMA progression.
“I rely on my doctor to go to bat for me and to distill all the medical information down into digestible terms that make sense for me,” she says. “Sometimes, a little reassurance is all I need to know that I’m doing OK. It takes a big mental load off me.”
Jose Flores was diagnosed with SMA type 3 at 3 years old. When he was a child, his symptoms were more mild and he didn’t require regular medical care.
“I had a great childhood. I was able to walk and run, ride, bike, roller skate, do all the things that healthy young boys do,” he says..
He didn’t start having difficulty until eighth grade when there was a big shift in his symptoms during high school. He began to have trouble with daily activities such as getting dressed.
Flores began seeing a neurologist, but eventually stopped going for a multitude of reasons: He became discouraged because there were no new treatments for SMA, the drive to the doctor’s office took too much time, and he felt he wasn’t getting positive results from his treatment.
It wasn’t until 2020 that he heard about a new treatment, Evrysdi (risdiplam), an oral medication that could be taken at home, or in his case, while traveling for work. This motivated him to get back on his path to treatment.
Around the same time he also started physical therapy, doing extensive stretching and weight-bearing exercises. His goal was to be able to stand up in a stander machine for 23 minutes — one minute for every year he’d been in a wheelchair.
He now has been able to stay upright for more than 60 minutes in the stander — a personal triumph.
“Between the medication and the physical therapy, I feel my best right now,” he says.
Edward Smith, MD, built and ran the Duke University children’s neuromuscular program in Durham, North Carolina, and spent the majority of his career as a clinical neurologist with a specialization in SMA and other neuromuscular disorders. He says it’s important to continue with treatments to help slow the progression of the disease.
“Having three treatments for SMA is huge,” he says. “Using any of those three treatments, if you give it early, it’s not slowing the progression; it’s turning the ship around.”
While medications can’t bring back lost neurons, Smith notes they can help preserve communication to muscle fibers, which helps a person with SMA maintain their muscle strength.
“Ideally, if someone is treated, they have the potential to get better, right in front of you, and doing things they thought they never would,” Smith says. “Even for those further along in the course of SMA, who have already lost function and mobility, treatment will allow them to hang on to function, such as hand strength, that much longer.”
From establishing a consistent daily routine to improving communication and boosting your mental health, these tips are designed to help make it easier to manage your SMA treatment plan and integrate it into your day-to-day life.
- Set specific times for taking medications, doing physical therapy exercises, and other essential tasks.
- Use reminder tools such as alarms, phone reminders, and medication apps to prompt you to take medications, refill your medications on time, and keep track of appointments.
- Buy a pill organizer to help manage your medications.
- Make sure you understand how to take your medications and that you or your caregiver are able to administer them.
- Always travel with an extra supply of your medications. When you are flying, pack them in your carry-on, not in checked baggage. Make sure the medication is clearly labeled and, particularly if you are traveling outside the U.S., carry your prescription or a doctor’s note on you.
- Keep an extra supply of medication at places where you spend a lot of time, such as your office or at friends’ and family members’ homes.
- Keep track of symptom changes by writing them on paper or the computer. Refer to them as needed during medical appointments.
- Make and keep regular appointments with your care team.
- Ask questions about your treatment. If your healthcare provider doesn’t know the answer, ask if they can get back to you with an answer.
- Do not delay in sharing any challenges, concerns, or changes in your condition. Always address any side effects immediately with your healthcare provider.
- Discuss the best method of communication with your healthcare provider, whether it by email, text, or phone.
- Share your treatment plan with caregivers and family members, and involve them in the process.
- Bring a family member or friend with you to medical appointments to support you, take detailed notes, and help with travel. Alternatively, ask your healthcare provider for permission to create a digital recording of the discussion on your phone.
- Keep your medical information up to date and easily available on a smart device or memory stick for use during appointments. Scan and digitize any written documents provided by your healthcare team, as reference materials.
- Recognize the importance of self-care and allocate time for rest and relaxation. Take time to rest if overly fatigued.
- Practice mindfulness, breathing techniques, stretch, and get a massage.
- Take care of your mental and emotional well-being. Seek psychological support such as counseling, join support groups, try daily coping strategies such as relaxation techniques or chatting with a friend, and make lifestyle changes to ensure you get enough exercise, sleep, and good nutrition.
- Make time to do something that brings you joy, such as talking with friends, petting a companion animal, reading a favorite book, watching a good movie, or spending time outside in nature.
- Be flexible and willing to adapt your treatment plan based on your evolving needs.
- Celebrate successes to reinforce positive habits, make plans for the future, and don’t worry about the things you can’t control.
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.
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