What to Expect With Primary Progressive MS

Primary progressive multiple sclerosis (PPMS) is a relatively slow and steady disease. And many people live with it for years without severe disability. Still, PPMS is a life-changer.

And the changes will happen whether or not you think about them or want them. If you understand what's coming, you have the chance to be ready when it happens and meet it on your terms, so it isn't as hard on you and your loved ones.

Take your worry and fears and turn them into practical action. For example, you could look into transportation options before you can't drive any more. You'll have time to find out what your insurance will and won't cover for in-home care. The more control you can take over your illness and the more independence you can keep, the less you'll feel like a victim.

With the right mind-set and planning, you can live a productive and satisfying life.

Prepare for Worsening Symptoms

Most people with PPMS first have trouble walking, and after many years, both legs may become stiff and weak. Many also have mild problems with their memory or thinking clearly. You may get other symptoms, too, such as fatigue, muscle stiffness (spasticity), and numbness, pain, or a "pins and needles" feeling.

While you won't know exactly what's going to happen next and you won't be able to repair your nerves, you can ease your symptoms and lessen the impact of the disease.

A physical therapist can work with you to strengthen weak muscles or build some parts of your body to make up for other areas. Exercise and physical therapy can also help calm spasms and relax tight muscles. Daily exercise can really boost your energy levels, too. Your exercise plan may include stretching, small weights, exercise bands, and water aerobics.

Medication can also help with spasticity as well as pain, fatigue, bladder and bowel problems, dizziness or vertigo, and sexual problems.

You'll probably end up working with a team of specialists, depending on your symptoms. You might see an MS nurse, a physical therapist, a speech/language pathologist to help you communicate when talking gets harder, and a massage therapist to ease stress and achy muscles.

You can look forward to lifestyle changes, too, like being careful of what and when you drink and scheduling regular bathroom breaks if you have bladder control issues. Or using lubricants and toys to improve your sex life.

Don't get discouraged. There are always options. If your doctor says there's nothing more you can do, it's time to find a new doctor.


Create an MS-Friendly Environment

Eventually, you're going to need help doing things you could easily do on your own before. That doesn't mean you'll need to quit doing them though. It means taking a different approach.

An occupational therapist can help you adjust to limitations at home and at work.

  • Teach you new ways of doing everyday tasks
  • Simplify tasks that may be sapping your energy
  • Organize your life to make up for problems with thinking, memory, or concentration, a process called cognitive rehabilitation

Think about using assistive technology -- devices that can help keep you mobile and active. You may have to equip your car with special tools so you can still drive. You may need to put grab bars in your bathroom to make it easier to shower and use the toilet.

Someday, you may even need to remodel your home, or move, to avoid stairs or tight spaces that make using a wheelchair difficult.

Ultimately, these changes are about keeping your quality of life. This doesn't mean you're "giving in" to your PPMS. It means you're taking charge.

Face Your Emotions

Besides the effects on your body, PPMS can take a toll on how you feel about yourself and the world around you.

Given all that you're going to deal with, it's not surprising that half of people with PPMS in one study had major depression at some point after their diagnosis. Sometimes it's caused by the disease itself, or it might be the result of what's been going on in your life.

A counselor or other mental health professional can help you work through the emotional struggles of living with MS, like navigating shifting relationships, coming to terms with grief, anger, guilt, worry, and loss, and finding the upside of challenging circumstances.

Practice being in the moment and appreciating what you have rather than stressing about what may come.

Just knowing you're not alone can make a big difference, too. Support groups can connect you with others who can relate to what you're going through. Check with your MS doctor for recommendations, or try the National MS Society.

With the right outlook, you can find and thrive in a "new normal."

WebMD Medical Reference Reviewed by Neil Lava, MD on June 23, 2016



National Multiple Sclerosis Society: "Managing Progressive MS."

MS Society UK: "What is primary progressive MS?"

National Multiple Sclerosis Society: "Spasticity," "Medications," "Pain," "Sexual Problems," "Living with Advanced MS," "Fatigue," "Cognitive Changes," "Increasing Accessibility."

Holland, N. International Journal of MS Care, Summer 2011.

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