2. Learn to Ask for and Accept Help
You may feel that asking other people for help is a sign of weakness or that it signals to others that you’re not able to manage your MS independently.
But this attitude can only hurt you in the long run, says Traci Paxton, LISW-S, a medical social worker at the OhioHealth Multiple Sclerosis Clinic in Columbus. It’s important to “reframe your thinking. It is actually a sign of strength,” she says. “Asking for help is an opportunity to find other perspectives to aid in navigating through life’s challenges.”
And rather than taking away your independence, getting the right help at the right time can actually help you maintain it.
3. Lean on the Right Person for the Right Task
Having reliable people who can help you get to doctor’s appointments, run errands, or just cheer you up when you’re having a bad day is crucial for everyone as they get older — even for people who don’t have MS.
Take stock of your support system, which may include family, friends, neighbors, or people in your religious community. Then, consider their personal preferences. “You don’t want to ask somebody who hates to drive to drive you somewhere, and you don’t ask somebody who is working full-time to take a day off,” says Kalb. “Think about the people you know, think about your needs, and ask for very specific assistance at a very specific time.”
It’s also important to plan ahead: For example, don’t wait until the morning of a doctor’s appointment to ask someone for a ride.
4. Get Outside Help With Transportation Needs
If your friends and family aren’t the best resource for your transportation needs, there are other options.
“If you have a Medicaid insurance plan, there should be nonemergency medical transportation benefits available. Call your insurance provider to inquire,” says Paxton. Ask your doctor if your local healthcare system has a transportation service or if there are community-based services at your local senior center. Many public transportation systems also offer paratransit services for people with disabilities who cannot use regular buses or subways.
You can also check out resources from the National Multiple Sclerosis Society (NMSS) and Can Do MS. In particular, an MS Navigator, a service of the NMSS, can help you figure out how you’ll get to and from appointments.
5. Find New Ways to Do Your Favorite Activities
Yes, you’re getting older, but that doesn’t mean you have to give up the activities you love. “One of the things that happens as we age with MS is that we start to limit our activities,” says Kalb. “People who have MS may tell themselves, ‘It’s too hard to go here or do that,’ or ‘It’s not accessible,’ or ‘I’m too tired,’” she adds.
Instead of giving in to those thoughts, it’s important to keep your world as stimulating, full, and active as it can be. If you want to travel, work with a physical therapist (PT) or occupational therapist (OT) to find ways to do it — or other activities — safely. If you want to visit others, find a place you can meet them that’s accessible for you. “The key is in being willing to use whatever’s in the tool chest that’ll help,” Kalb says.
An OT consult can be great for anyone with MS who is aging, she adds. These specialists can come look at your home and find ways to make it more accessible and comfortable. “That way, you’re optimizing your independence in your home without compromising your safety,” she says.
6. Reframe the Role of Assistive Devices and Mobility Aids
Your MS affects not just you but your whole family too. Invite those closest to you to appointments with your doctor, PT, or OT, and talk about what might help them help you.
“It’s not ‘your’ walker or ‘your’ wheelchair; it’s ‘our’ tool chest,” says Kalb. Consider how these tools can enhance your relationship. Kalb recommends asking, “What tool could we get that would enable us to go back out to shows, to the mall, to visit friends, or to travel around the world?”
7. Don’t Accept That ‘There’s Nothing More We Can Do for You’
If any member of your care team says that they can’t recommend anything new to help your symptoms, don’t give up. “That’s never true,” Kalb says. “If you have a healthcare provider who’s saying that to you, you’ve got to find a different provider. There’s always something [else that can be done].”
There are many ways to continue pushing toward better health and well-being, says Paxton. Consider adding new services to your MS treatment and management arsenal to help maintain, or even improve, your level of functioning, such as:
Certain wellness programs incorporate many of these disciplines into a long-term, comprehensive MS care plan. However, if you’re unable to find an MS wellness program near you, general wellness programs can also be beneficial for your long-term health. “Work with your healthcare team to create a wellness plan around your needs and, most importantly, your goals,” Paxton says.
8. Be Your Own Advocate
According to researchers, more clinical trials involving older adults are necessary, and patient-centered care models, where there is effective communication between primary care physicians, neurologists, rehabilitation physicians, and geriatricians, should be prioritized. But researchers also note that an important aspect is empowering people with MS to drive their care needs.
Don’t be afraid to ask your doctor questions or for clarification on something they’ve said. “Education is known to reduce anxiety, and we know unmanaged anxiety can lead to pseudo-exacerbations,” says Paxton. (A pseudo-exacerbation is a worsening of symptoms due to factors outside of MS itself, like stress or anxiety.)
9. Get Involved in the MS Community
One frustration that comes with growing older with MS is that you may not be eligible to participate in clinical trials, in which you could receive cutting-edge treatments. “There are very valid reasons why they need to limit the study population [to exclude older participants], but there are still ways that older people with MS can become involved in research,” says Kalb, who suggests checking out the organization iConquerMS.
In addition, connect with others who have MS, whether it’s through the NMSS or Can Do MS. Kalb says that Can Do MS has programs for different segments of the MS population. “What participants all say at the end is, ‘Oh my gosh, I didn’t know there were so many people out there like me,’” she says. Some of these events are virtual, so you can take part from home.
10. Take It One Day at a Time
As you know, MS can be unpredictable. While being proactive and thinking ahead is important when it comes to managing MS, it’s also okay to be gentle and patient with yourself. If the appearance of new symptoms or the progression of the disease feels overwhelming, reach out to your support system and know that there are people who will understand.
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