Maintaining independence is a concern for many people with multiple sclerosis (MS). And everyone needs a little help sometimes. One member of MyMSTeam encouraged others to take advantage of resources when needed.
“As someone who has suffered with MS for 30 years, it is important for 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 on here. ‘Independence’ is great, but you’ve got to take what help is available. It could be a walking stick or a walker or someone asking if you need some groceries. Taking that help doesn’t mean you have failed at being independent. It means you are giving yourself a break. Trying to do everything yourself puts pressure and messes with your mental wellness.”
If maintaining independence is important to you, it’s a good idea to familiarize yourself with the many resources that can enable you to do so. Here are some programs for independent living with MS.
Several MyMSTeam members have mentioned that grocery shopping is a challenge. One member wrote, “I gave up grocery shopping and do curbside pickup. I used to dread it so much, hanging on to the cart, huffing and puffing to get through it.”
Grocery shopping often requires battling crowds, pushing a cart through the store, thinking quickly about prices, keeping track of your list, waiting in long lines, and packing everything up only to unpack it again at home. The mental and physical requirements of grocery shopping can zap your energy for other tasks on your to-do list. Fortunately, several grocery delivery options can ease some of the burden.
Some stores let you order groceries for delivery or for curbside pickup, including Safeway, Kroger, Albertsons, Wegmans, and others. In some cases, the stores have partnered with a third-party delivery service, such as Instacart. You can also go directly to Instacart, or another third-party app such as DoorDash and Shipt, to look for grocery delivery options from local stores. Shop around a bit: Some stores and third-party delivery services may offer discounts or free delivery, depending on whether you’re a first-time customer or how much you spend.
If you don’t care to have all your groceries delivered, various companies deliver certain specialty or bulk grocery items. Ordering some of your food can shorten your grocery trips — you’ll already have some items at home.
Companies that offer food delivery include:
Depending on your local program’s criteria, you may also qualify for meal delivery through Meals on Wheels. This national nonprofit organization provides nutritious prepared foods to the community, traditionally to older adults who meet certain income guidelines or can’t leave home because of mobility issues. You can search your ZIP code online to see what’s offered near you.
People with MS may begin to worry about driving, due to either physical disability or cognitive impairments (problems with thinking and memory). One member shared, “My mom is concerned about my reaction time. She never lets me drive. But the Department of Rehabilitation will adapt your vehicle if necessary, so all the controls are on the steering wheel if needed.”
Finding alternative transportation resources can also help you stay independent. The Eldercare Locator is part of the National Aging and Disability Transportation Center, which assists people of all ages. You can call 800-677-1116 to speak with a mobility manager who will help you find transportation services in your area. The locator’s helpline is open on weekdays from 9 a.m. to 8 p.m. Eastern time.
Examples of the types of resources you may find include:
You can also ask for help signing up for a ride-sharing service (like Uber or Lyft) or navigating your community’s public transportation system.
The Eldercare Locator also has resources for modifying your home with assistive technology to make it more MS-friendly.
People with MS may benefit from renovations like:
You can ask your mortgage lender about using home equity to help fund the renovations. Many contractors offer financing options that allow you to pay for home improvements over time with little to no interest. You can also reach out to nonprofits such as Rebuilding Together, an organization that works in various communities to provide essential home repairs.
Hiring a caregiver can help you maintain your independence and stay at home longer. Caregivers assist with personal care like toileting and bathing and may help with homemaker tasks like cooking and cleaning. You can hire a home care provider directly or use an agency to find the right fit. Sometimes, private health insurance companies help with the payment, and other times, government programs like Medicaid or Medicare will cover some of the costs. Ask your health care professional to refer you to a social worker who can guide you through the process and evaluate your options.
Mental health is just as important as physical well-being with MS. Everyone has good days and bad days, but a network of support can help keep you afloat when challenges arise.
You can find support by getting a referral to a therapist or support group through your health care provider. If you’re a member of a religious community or affiliated with other local groups, make an effort to maintain those connections. Don’t be afraid to reach out for help when you need it. Thinking of ways to contribute and support others in return helps you establish a balanced give-and-take relationship that strengthens your community ties.
Online support groups offer another good option, especially if you’re having trouble finding others nearby who can relate to what you’re going through.
Some people with MS choose to get a service dog for practical help and companionship. Although service dogs undergo extensive training, they may be obtained through charitable programs for minimal cost. If you have no other dogs at home and can meet the demands of caring for a pet, you might be a good candidate for a service dog.
The nonprofit Assistance Dogs International can help you search for a nearby service dog provider that’s been ethically trained by a vetted company. A service dog may help you by:
One MyMSTeam member described some of the benefits their service dog provides: “You can train your own dog and then have it certified through most local Animal Control Services. I trained my own stability-mobility dog for on the ranch and in public. Having her help me stabilize on uneven ground, walking out to the barn, and going up steps and ramps is becoming a must. She also helps me get up off the couch or out of a chair if needed.”
Independent living with MS can be challenging, but with proper management, you can live a fulfilling life. Everyone’s experience with MS is different, so it’s important to work with a health care professional to develop a plan that works for you to maintain your independence.
MyMSTeam is the social network for people with multiple sclerosis and their family members and loved ones. On MyMSTeam, more than 195,000 members come together to ask questions, give advice, and share their stories with others who understand life with multiple sclerosis.
What care services do you use to manage daily tasks? Have you found any community-based support services that help you maintain your quality of life? Share your thoughts in the comments below, or start a conversation by posting on your Activities page.