Improve your quality of life
Before looking at treatments for progressive MS and symptom management, let’s look at some general ways for you to improve your quality of life. Coping with a chronic illness such as MS takes planning and can be especially challenging if you experience fatigue, depression, cognitive difficulties, or have trouble getting around. Below are some strategies that might be helpful.
Get the most out of medical appointments
It’s important to work with your health professionals to make sure you get the best care. Maximize the value of each visit by preparing in advance.
- Think about what you want to accomplish during your upcoming visit.
- Make a list of important questions or concerns you would like to discuss.
- Tell your doctor about any changes in symptoms (see the symptom tracking graph).
- Review which medications you are taking and when/how you are taking them (see the prescription, non-prescription and supplement tracking graph).
- Mention any problems or questions you have about your medications.
- Let your doctor know if you have seen any other healthcare professionals recently that s/he may not know about.
- Consider bringing a friend or family member to your appointment for support and to help keep track of anything discussed.
Because MS symptoms can be so diverse, people tend to assume that any symptom is related to their MS. But this is not always the case. Be sure to see your doctor about symptoms that are troubling you. Your doctor or community pharmacist is likely a very good source of information, but sometimes he/she may not be as knowledgeable about MS as you. Help your doctor to help you by sharing new information. For instance, sometimes people with MS will bring their doctor information about symptom medications their doctor may not be aware of.
The MS Society of Canada can assist by offering you information on existing symptom management medications and techniques.
Use rehabilitation services
Rehabilitation, can help you maintain or reach your best physical, emotional, and functional level no matter what disabilities you have. It can play a very important role in enhancing your day-to-day living. One type of rehab, referred to as restorative rehab, aims to regain function after it is lost, which can be difficult (for example, reducing spasticity or strengthening muscles). It tends to be focused with measurable results (for example, improved mobility in a specific limb).
With progressive MS, maintenance or preventative rehab tends to play a larger role. The goal of this type of rehab is to make up for lost functions with strategies and techniques that let a person function at their highest level despite the severity of their MS. Maintenance rehab focuses on the whole person and is more general (for example, helping an individual to maximize independence). Below are a few specific types of rehab specialists. Be sure to ask your doctor about how each might help you.
Physiotherapists (PTs) evaluate your movement and functioning — including your strength, mobility, balance, posture, fatigue, and pain management. PTs can help you meet the physical challenges and demands of your life. They can also suggest an appropriate exercise regime and should be consulted regarding the proper use of motor aids such as orthotics (shoe inserts or braces), canes, crutches, walkers, wheelchairs, or scooters.
Occupational therapists (OTs) help work on the every day skills that you need to function as independently as possible at home and at work. They target upper body strength, mobility, and coordination and can help you use assistive technologies to increase ease of access and independence. OTs offer ways to simplify work or manage fatigue and stress. They can also teach you strategies for functioning despite thinking, sensation, or vision problems.
Psychologists and psychiatrists may be helpful if you experience cognitive or mood changes. Having to deal with MS can cause depression for some, but the disease process itself can also play a role. Depression can have a powerful impact on a person’s estimation of their quality of life. It is important to know that while depression is very common in people with MS, it is also very treatable through medications and psychological therapy.
Speech and language therapists help work on speech or swallowing problems that result from impaired muscle control. Sometimes they are also involved in the evaluation and management of cognitive dysfunction, especially when it affects communication.
Social workers assess social needs and can help refer you to resources about income maintenance, insurance, housing, long-term care options, etc.
There are many other resources to help you, including psychiatrists, neuropsychologists, dieticians, orthotists, and urologists, to name a few. If you think you would benefit from any of these specialists, consider visiting an MS clinic, or speak to your doctor about possible referrals.
No diet has been proven to impact the course of MS. That said, it makes sense to choose healthy, nutritious foods. A diet low in saturated fats (meat, eggs, dairy products) and high in monounsaturated fats (canola oil, olives and olive oil, nuts, seeds, avocados) and polyunsaturated fats (flaxseed oil, fish and fish oil) may be helpful. Some people believe that avoiding wheat and dairy products helps their symptoms. Eating plenty of fruits, grains and vegetables helps to keep your heart healthy, avoid constipation, and maintain a healthy weight.
If you do change your diet radically, it is a good idea to consult your doctor or a nutrition specialist. You could also contact the nutrition service of your community health service or provincial health ministry. In addition, the MS Society’s Healthy Eating: A guide for persons with multiple sclerosis examines what makes up a healthy diet.
Exercise can be of great benefit in MS
Current research has provided evidence to support that exercise is in fact beneficial and safe for people living with MS and it is now considered to be an important aspect of the overall management of the disease. In 2012, the Canadian Society for Exercise Physiology released the Canadian Physical Activity Guidelines for Adults with MS to provide a reference to appropriate physical activity levels, including the minimum frequency, intensity, duration and type of physical activity necessary for improved fitness among adults with MS. The guidelines were developed to provide a basis for exercise prescription, target goals for promoting physical activity and to serve as a benchmark for monitoring activity levels among individuals with MS.
See also the Get Fit Toolkit which outlines how a person with MS can include safe, appropriate and effective physical activity into their weekly routine.
It is best to consult with a professional (such as a physiotherapist) when choosing an exercise regime to ensure that it is suitable for you. There are many different types of exercise: some that increase mobility through stretching and range of motion (helpful for weakness and stiffness), some that improve balance, some that are aerobic, and some for relaxation. The best exercise regime is balanced and helps you feel better and stronger.
Generally, stress is not helpful to anyone’s wellbeing. Ensure that you get some time to relax and surround yourself, where possible, with people and things that are fulfilling to you. You might even consider regular meditation practice. Simple practices such as meditating for 15 minutes a day, learning yoga or tai chi, or going for a massage can help relieve tension and have psychological benefit. Check programs and services to find out what is being offered near you. You might wish to refer to the MS Society publication, Taming Stress in MS.
Asking for help can be a strength
Everyone needs help sometimes. Consider your friends, family, doctor, MS Society of Canada, or trained counsellors when you’re looking for support. Your friends and family may appreciate your explaining how they can best support you. Sometimes people want to help, but they don’t know how to be the most helpful. Some people with MS want very specific support (for example, help getting groceries every couple of weeks). Asking for support can enable you to be more functional, by freeing up more energy, time, or emotions for other priorities.
Consider group support
Talking about MS with others can offer you the support you need to get through difficult times. It can also connect you to a huge network of people who are coping with MS. By getting involved with support groups, you not only increase your network of knowledge, but you may find others that can relate to your struggles, and who may help you to uncover resources (both inner and outer) that can improve your situation. The MS Society of Canada has many self-help groups. Check programs and services to see if there is a group near you.
Educate yourself about MS. The MS Society of Canada offers accurate and up-to-date information related to programs and services, disease management and MS research.
Call toll-free in Canada: 1-800-268-7582
Surround yourself with people and things that give you pleasure and energy
Happiness can come from something very simple like a conversation with people you love, enjoying a new craft or hobby, laughing with a friend, listening to music, or being outdoors.