Cognitive symptoms of multiple sclerosis can cause a loss of independence that many people with MS find challenging. Independence is a topic that is frequently discussed on MyMSTeam, as members adjust to the changes that can come as MS progresses.
“I’m moving in with my daughter and son-in-law. It’s hard giving up independence. I love them, but I miss my independence,” a member wrote.
Another member said, “I have RRMS [relapsing-remitting MS] that started in 2009 and was diagnosed in 2019. Losing our hard-earned independence later in life really stinks!”
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. Physical disability can develop, particularly in progressive MS. Symptoms of MS may include impaired movement, tingling and numbness, vision problems, and sexual, bladder, and bowel dysfunction.
Cognitive symptoms develop in more than 50 percent of people who have MS, with a higher prevalence in men. Cognitive impairment with MS is believed to be caused by brain lesions, changes in white matter, and brain atrophy.
Changes in cognitive function can affect memory, information processing speed, attention, executive functioning (decision-making), the ability to perceive visual and spatial relationships, and verbal fluency (the ability to find words). Cognitive deficits are often referred to as brain fog among people with MS because they feel foggy in their thinking and have a hard time concentrating.
Although a decline in cognitive function is one of the main reasons people with MS stop working, it is rare for cognitive dysfunction to cause a complete loss of independence. Nonetheless, a loss of career or other abilities can be difficult.
One MyMSTeam member wrote, “My MS is causing havoc in some areas. This is especially true with cognitive deficits that I have been experiencing for about four to five years. UGH!!!! This is the major reason why I am not working anymore.”
Another member also left the workforce due to cognitive impairment. “I am a recently retired RN. I retired due to cognitive problems,” they said.
Losing the ability to work may have a serious impact on income as well. Research shows that people with MS experience a loss of income that is significantly more than the general population. If you have lost income due to MS, you may be eligible for disability payments.
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. Despite the independence that driving may offer, safety should be your number one priority if you have cognitive symptoms with MS.
One MyMSTeam member described a distressing experience while driving with visual perception problems. “Today, I was driving, slowing down for a light in traffic, and I felt like I was moving fast in a tunnel. I almost ran into the car in front of me because I had no distance perception. This is the second time I’ve had this in the last few months,” they said.
“I have not been driving for two weeks, and it is starting to get to me lately,” another member wrote. “Not working has been the hardest, but not driving is coming in a close second.”
“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.”
Be sure to talk to your neurologist if you experience cognitive symptoms while driving to avoid a dangerous situation. You may need 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, which may lessen some symptoms.
Watch MS specialist Dr. Aaron Boster discuss how to determine whether it's time to bring in a caregiver.
People with MS and 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.
One MyMSTeam member described their struggles with managing various tasks and cognitive deficits. “Multitasking is out the window along with processing speed. I do not know which is worse, mobility or cognitive difficulties. If I had to make a choice, I would pick the lesser of two evils: mobility issues. At least you can think straight on the spot when the need arises.”
“I hate the fact that I am losing my memory. I know that some of my cognitive changes are due to age, but some of it is MS,” another member wrote.
Losing independence can have an emotional toll on people with MS. Your emotional well-being is important for your overall health and correlates with better self-care and quality of life. 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.
MyMSTeam members often offer tips for staying positive despite losing some of their independence. One member shared their perspective. “As someone who has suffered with MS for 30 years now, it is important to me to say: Give yourself a break. It’s not your fault you have MS. I see the word INDEPENDENCE written in a lot of messages here. Independence is great, but you’ve got to take what help is offered. It doesn’t mean you have failed at being independent — it means you are giving yourself a break.”
“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. I think there is nothing better than music to help people. Music therapy = Connectivity, love, and happiness,” wrote another member.
Another member shared, “I have progressive relapsing MS. I used to be active and walk easily. Now I use a walker to help me move around. I also went to the movies and sat at the back and needed help to walk down the stairs. My independence is gone. My life has changed, but I still try to make friends and stay happy.”
“We are taught independence at a young age. What we need to teach and learn is a healthy balance between independence and interdependence,” a member said. 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.”
On MyMSTeam, the social network for people with multiple sclerosis and their loved ones, more than 186,000 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.