Advanced Care Needs
Progression of Multiple Sclerosis
Researchers are working to identify new and better strategies to stop multiple sclerosis progression. In the meantime, your MS symptoms may be worsening despite everything you and your healthcare providers do to slow disease progression, including using a disease-modifying treatment.Many people ask themselves, “Am I doing anything to make this happen?" And the short answer is, “no.” MS progresses naturally in many people in different ways. And the rate of MS progression is different for everyone.
Factors That Suggest How Your MS Might Affect You
MS is unpredictable by nature. Your doctor can’t tell for sure what the outcome will be or how far or fast it will progress. However, some factors can help you and your healthcare provider have a sense for how the disease may affect you.Several studies show that people tend to do better if they have:- Fewer relapses (or attacks) the first few years after diagnosis
- Long intervals between relapses
- Complete recovery from relapses
- Sensory relapses (with numbness, tingling or visual loss) and /or
- Nearly normal neurological examinations after 5 years
- Early tremors
- Lack of coordination
- Difficulty walking
- Frequent attacks with incomplete recoveries
- Early neurological abnormalities or
- More lesions on MRI early on
Identifying Advanced Care Options
While you may not be able to control all of the factors above, you may find solutions to some of the challenges you face. If your healthcare provider has no additional suggestions to offer:- Search for another healthcare provider. You can find one who will partner with you in managing your symptoms and maintaining your quality of life.
- Connect with an MS Navigator at 1-800-344-4867 or online for referrals to healthcare professionals with knowledge and competency in MS care.
Redefine Control and Independence
Sometimes MS symptoms can progress to the point where they significantly interfere with daily activities. Changes like this can threaten your self-confidence and feelings of self-worth.Remember that maintaining control and independence doesn’t necessarily mean doing everything the way you used to. By allowing yourself to do things differently, you can use assistive technology (AT). AT is an array of tools and devices that save energy and labor, and allow you to stay active and productive.Rehabilitation professionals can help you navigate the world of assistive technology and suggest modifications to your home and work environment, so you can have more control and independence.If you have significant disability, you can address your medical needs to increase your independence with complex rehabilitation technology (CRT) or medically necessary products. These include:- Personalized manual and power wheelchairs
- Seating and positioning systems
- Accessories such as customized seat cushions
- Tilt-in-space features
- Head and trunk support systems
Managing Other Health Conditions
People with MS have more co-occurring health problems than others. The most common ones are:- High blood pressure
- Diabetes
- Heart disease
- Fibromyalgia
- Depression
- Anxiety
- Bipolar disorder
- Chronic lung disease
Additional Resources
- National Adult Day Services Association – See some suggestions for choosing the right adult day center for you or your loved one. Find an Adult Day Services (ADS) center near you.
- ARCH National Respite Network and Resource Center – This organization promotes respite care, a service that allows caregivers to take a break from their usual tasks. Find respite and crisis care services in your area, and other caregiver resources.
- Easterseals Adult Day Centers – These centers are designed to meet the needs of each community served. Easterseals adult day services are an affordable alternative to nursing homes and in-home care. Locate an Easterseals to learn more including other local services.
- About Assisted Living - Get information about assisted living facilities and costs, and use the search tool to find a provider near you.
- A Place for Mom - Find the right place and service for elderly or disabled family members. They also provide data on assisted living centers, nursing home facilities and memory care.
- Caring.com - Learn about types of senior and disabled living, read reviews, get resources and search state directories.
- Financial Planning - Find an elder-law attorney or estate/financial planner.
- PayingforSeniorCare.com - Use an Eldercare Financial Resource Locator tool and plan for and implement long-term senior care.