Cognitive symptoms of multiple sclerosis (MS) can cause a loss of independence that many people with the condition find challenging. MyMSTeam members frequently discuss independence as they adjust to cognitive dysfunction that can come as MS progresses.
“We are taught independence at a young age,” wrote one member. “What we need to teach and learn is a healthy balance between independence and interdependence.” Another member added, “After a while, you get accustomed to a different kind of life and end up redefining what it means to be independent in light of an illness like MS.”
MS is a disease of the central nervous system in which the immune system mistakenly attacks nerve fibers in the brain and spinal cord, causing demyelination of nerve endings. (“Demyelination” comes from the word “myelin,” the protective sheath around nerves.) Physical disability can develop from nerve damage, particularly in progressive MS.
More than 50 percent of people who have MS develop cognitive problems, with a higher prevalence in men, according to the National Multiple Sclerosis Society. Researchers believe brain lesions, changes in white matter, and brain atrophy cause the cognitive impairment in MS.
Although it’s common among people with MS to lose independence in some ways over time, there are ways to shift the way you view and pursue independence. Here are five ideas for ways to redefine independence with MS.
Changes in cognitive function can affect:
Whatever your abilities, you can continue to reach for goals. Stay open to changing those goals if your abilities change, and you can continue to strive.
When one member of MyMSTeam shared that they’d given up playing bass in a blues band because they could no longer lift their heavy amplifier, another musical member wrote encouragingly: “I didn’t take no for an answer from MS. You’re still empowered to get back anything MS took from you, albeit, maybe with a smaller amp to start. :-)”
“Start out small and set little goals every day, and if you manage to get to that goal on that day, reward yourself,” advised another member. “And if you don’t reach that goal, don’t worry about it. Tomorrow is another day, so stay positive.”
Another MyMSTeam member said their goals are informed by their MS: “MS can cause a roadblock in life, but I am never going to let it get in the way of my dreams. I will be a music therapist in two years, and my goal is to help with MS, especially with cognitive issues and depression. I want to make a difference where I can help people.”
People with cognitive symptoms may require extra help with daily activities. Day-to-day tasks such as cooking or paying bills may be difficult with cognitive symptoms that impair memory, attention, or processing of information. It can be easy to feel like asking for help or needing accommodations lessens independence, but as one MyMSTeam member put it, “A caregiver helps promote independence.”
Another member summed it up: “I learned it’s not a weakness to ask for help when you need it. To me, it is a strength when you can face what you have and go on. We have a saying: We have MS, but it doesn’t have us. I won’t let this thing make me feel embarrassed or less of a person because I have MS and need help sometimes. Everyone at one point needs help; we just need a little more.”
“Take that help,” wrote another MyMSTeam member. “It doesn’t mean you’ve failed at being independent, it means you are giving yourself a break. MS is about being strong of mind. Putting pressure on yourself to be fully independent messes with your mental wellness, and that is the most important wellness.”
You can ask for help, stay “strong of mind,” and still be independent.
Watch MS specialist Dr. Aaron Boster discuss how to determine whether it’s time to bring in a caregiver.
Change is a constant in life, regardless of your health conditions. But people with MS may have to accept hard changes earlier than others. If you can find your way to acceptance and make decisions rather than having them forced on you, you may be able to preserve a feeling of independence and control.
For instance, driving is an important aspect of independence for many people. However, a study from the American Academy of Neurology showed that cognitive symptoms in people with MS can decrease driving reaction time and increase the risk of an accident. Keeping safety as your No. 1 priority, you may have to decide when to limit or stop driving.
“I had to stop driving mostly because I would try to drive somewhere and get so screwed up on directions!” a member said. “So I gracefully made the decision to stop driving.”
If you’re unsure whether it’s still safe to drive, talk to your neurologist about cognitive testing — a type of neuropsychological assessment — to determine what type of cognitive performance issues you may be having. Your doctor may recommend cognitive rehabilitation, a series of interventions that may lessen some symptoms.
Driving is just one example, but the principle can apply to changes small or large. “I have made a decision not to ‘sweat the small stuff,’ and I feel empowered by my decision and happier because of my decision,” wrote one MyMSTeam member.
Independence doesn’t always mean having the power to say yes. Independence can mean putting yourself and your health first and saying no. As one MyMSTeam member put it, “Saying no is one of the most important things you need to do for yourself as an MS’er. Only you can articulate your needs. If people get offended, that’s too darn bad. My wellness is my priority, my responsibility.”
Members frequently discuss the pressure they feel to say “yes” to demands at work, social engagements, and family members about tasks of daily living. Guilt often follows if they do say no. However, members who have been able to work through these challenges report finding a strong sense of empowerment around saying no when they need to:
It may take practice, but you can work toward embracing this aspect of independence. “No” can be a sound that rings the bells of freedom for many people with MS.
Losing independence can take an emotional toll. Your mental health and emotional well-being are important for your overall health and correlate with better self-care and quality of life. One major aspect of independence is choosing your priorities. You can choose to focus on your well-being as an act of independence.
As one member of MyMSTeam wrote, “My priorities have completely changed since being diagnosed. But for the better.”
Another member shared, “I have progressive relapsing MS. My independence is gone. My life has changed, but I still try to make friends and stay happy.”
Here are some steps you can take to nurture your emotional health and maintain a full life:
Your health care team can provide referrals for psychological counseling if you need help maintaining your emotional well-being.
Read more about signs of cognitive changes in MS.
On MyMSTeam, the social network for people with multiple sclerosis and their loved ones, more than 195,000 members come together to ask questions, give advice, and share their stories with others who understand life with multiple sclerosis.
Are there any ways you’ve lost independence since developing MS? How do you deal with these changes? Share your advice in the comments below, or start a conversation by posting on your Activities page.