Aging well requires adjustments and adaptations.
When you have multiple sclerosis, taking advantage of available assistance can make a big difference.
“I feel too old and too young at the same time,” says Steve Caramia, 58, a graphic designer in Kensington, California, who was diagnosed with multiple sclerosis (MS) 25 years ago. “Even though I look young, I need the assistance normally given to a 78-year-old,” Caramia says.
[source: Everyday Health] Everyone has to make adjustments as they get older. But for people who have multiple sclerosis — which is sometimes said to cause “accelerated” aging — adaptations and adjustments in attitudes are often required at an earlier age and over a longer portion of life.
If you are approaching, are in the thick of, or are past middle age and are living with MS, as I am, here are eight things that I’ve found helpful in my effort to “age well” and enjoy life as I get older. You may find them useful too.
1. Seek and Accept Help
According to the health psychologist Terry DiLorenzo, PhD, writing in a clinical bulletin for the National Multiple Sclerosis Society, “Assistance (both social support and assistive devices) can modify people’s experiences and perceptions of their levels of mobility and independence.” Dr. DiLorenzo and her colleagues have found in studies that even older people with MS who require substantial assistance to get around feel mobile when such assistance is available.
Some people refuse assistance because they’re embarrassed or because they don’t want to impose. Reggie Lopez, a 60-year-old former sheriff in Los Angeles, has been increasingly confined to his home because he “isn’t comfortable” using a walker. “I don’t want people to see me like this,” he says.
According to DiLorenzo, older individuals typically become more willing to accept help from family and friends. We may also become less embarrassed about needing assistance over time.
Joanne Cosenza, a 77-year-old who has MS and lives in San Francisco, has been using a walker for 10 years. “I didn’t feel bad about it,” she says. “I compared myself to other people my age, and they have problems, too.”
Sometimes it helps to ease into new ways of living. Caramia recently transitioned to a power wheelchair and had a ramp installed for the front stairs of his home, but he still hasn’t taken his chair onto a city bus. Since he no longer drives, he is dependent on his husband to drive him places. He plans to take his husband with him for support on a couple of city bus trips until he gets more comfortable with it.
Caramia does use other kinds of help. For example, he takes advantage of Costco’s delivery service. “It’s a little more expensive,” he says, “but having them deliver is so much easier.”
Both Caramia and Cosenza pay housekeepers to do heavy cleaning every couple of weeks.
2. Keep Up With Your Healthcare
People with MS may face barriers to getting care, including mobility problems that make it difficult to travel to and from healthcare appointments. But if you don’t get that care, both MS-related problems and other medical conditions may go untreated or even undiagnosed.
You may need to work out a plan for getting to your doctor, having doctors come to you, or getting care by phone or computer.
If you don’t have a friend or family member who can drive you to medical appointments, try contacting your city or county office on aging and disabilities for public transit options. Some communities have free ride services for senior citizens and people with disabilities. Or perhaps a taxi or one of the newer ride-hailing services would work for you.
3. Plan, Pace, and Prioritize
Older people and people with MS typically can’t do as much as we did when we were younger. We have to use our energy more efficiently.
“I plan out my day every morning,” says Cosenza. “I think of all the things I want to do, then cut the list in half. I do the priorities and get them out of the way. Then I do what’s left over if I can.”
It may help to take frequent breaks, either between activities or in the middle of more time-consuming tasks.
Cosenza says, “I try to rest enough beforehand to be able to fulfill a commitment. My friends understand that sometimes I have to cancel.”
4. Prepare for Progression
By the time you need accessible housing or assisted living, it will likely be too late to start looking. Waiting lists are long, and getting around to see places becomes difficult.
Start your search while you still can. You want to find a place that is accessible, affordable, and pleasant — and that can take time.
5. Stay Connected
Maintaining social support is important for everyone, and even more so for those with MS. MS puts strains on a marriage, and couples may need to learn new ways to meet each other’s needs.
Typically, spouses of people with MS take on more caregiving roles, which can cause tension for both of you. Your spouse is getting older, too, and he or she also needs breaks and support. The two of you need to keep having positive, fun times together.
Other social connections are equally important. Cosenza’s senior housing fills her social needs. “We all know each other and look out for each other,” she says. “We go out together and do activities.”
Being around younger people livens her up, too. “I go out every day, and I like seeing all these young people around walking their children and their dogs.”
If you can’t get out to see people, social media can help keep you connected. Pets also provide support and connection for people who feel able to take care of them.
6. Keep Moving
People with MS have an increased risk of heart disease because exercise can be difficult. Find ways to keep moving; a physical therapist may help.
Getting out most days may also keep you from becoming depressed.
Try to keep your mind active, too. Learning something new can slow down MS-related cognitive decline.
7. Help Others
According to DiLorenzo, generativity, or giving back, greatly improves the quality of life of older people with MS. Generativity can include involvement in one’s family and community as well as volunteer work.
Caramia works from home as a webmaster for a nonprofit in Marin County. Cosenza helps neighbors with various needs.
A simple kind word or attentive listening are rare and valuable ways to help others.
8. Keep a Positive Attitude
Psychologists call the process of looking at things in a different way “reframing.” Challenge your negative beliefs — about yourself, other people, or events — and see if you can view things from a different, more positive perspective. Learn to appreciate the simple things in life, the things you still have and can still do.
Aging with MS is not a curse.
DiLorenzo reports that “despite being more physically disabled, older MS patients report levels of quality of life, mental health, and general health equivalent to or better than younger MS patients.”