Has someone important to you been diagnosed with multiple sclerosis (MS)? This disease can be hard for patients — as well as their family and friends — to live with. Here are some important things to remember if you love someone with this disease.
1. They Value Their Independence
Many MS patients, as the diseases progresses, can have problems with muscle control and mobility — and everyday tasks like preparing a meal, walking or going to the bathroom can become a challenge. But they want to maintain their independence and do for themselves for as long as they possibly can. It is an important part of their dignity.
2. They Live in Hope
MS is a progressive disease and there is no cure for it. However, they do have hope that this might change. And research is underway around the world to help find eventually find a cure for this difficult disease. And in the meantime, new MS treatments are offering the hope for a better quality of life.
3. They Want to be Acknowledged
As the MS advances, many patients will often become confined to a wheelchair and may have difficulty speaking and some short term memory loss. Oftentimes, other people will feel uncomfortable about this and talk to relatives or doctors as though the patient is not there. People with MS want to be acknowledged and spoken to directly: their IQ is not affected by this disease and they want to be able to communicate just like everyone else.
4. They are Not Helpless
People with MS can be empowered to take control of managing their disease through many lifestyle choices. Diet, for instance, can play an important role in MS management and although it cannot cure the disease, it can help with the health of the immune system and the body in general.
5. They are Not Alone
Over 2.5 million people all around the world live with multiple sclerosis every day. There are 400,000 in the United States alone and around 200 new people are diagnosed with this disease each week. Because of its prevalence, there are MS support groups all over the country and many people find that joining a support group and getting connected with other who also struggle with this disease is emotionally helpful.
6. They Have Choices
Many patients with MS are choosing the route of complementary and alternative medicines to help manage with condition. Some will do this along with traditional treatments and some in place of them. These alternatives include herbal therapy, acupuncture and massage therapy, among others.
7. They Do Not All Have the Same Signs and Symptoms
Multiple sclerosis is not a “one size fits all” disease! It is different for each person who experiences it. There are four types of multiple sclerosis and each one can be mild, moderate or severe. Not all people with MS will wind up with walkers or wheelchairs. Not all will have vision or memory problems, either.
8. They Do Not Have a Fatal Disease
Multiple sclerosis is not considered to be a fatal disease. The life expectancy of someone with MS is only 5-10 years less than that of the general population and with new treatments and better understanding of the disease, even that gap is beginning to close. It is important to note, however, that somecomplications from MS, like pneumonia, can become life-threatening.
9. They have the Same Interests as Everyone Else
People with MS enjoying going out to eat with friends, visiting a park or museum or going to a place of worship — in short, they have much the same interests as everyone else! While it can take more planning and preparation to do these things with MS, it is still possible and still an enjoyable experience to get out and live life as fully as possible.
10. They Like to Be Active
Don’t assume that because someone has to use a walker or a wheelchair that they have to “rest” or “take it easy” all the time. Even as the disease progresses, exercise within reason is considered to be beneficial for MS patients and activity in general can help to keep to boost the immune system and help with symptoms like depression.
11. They Can Struggle with Depression
Because multiple sclerosis can lead to a loss of independence as the diseases progresses and because this disease has no cure, people with MS can struggle with feelings of depression. It is important to talk to the doctor about these feelings and seek therapy and/or medications — but loving support from family and friends can really help them, too.
12. They Can Have Vision Problems, Too
Multiple sclerosis affects nerves throughout the body — including the optic nerve which controls vision. As a result of this, people with MS can struggle with vision at times and have symptoms like blurred or double vision, difficulty controlling the movements of their eyes or even blindness (this is usually in just one eye and usually temporary).
13. They Might have Periods of Remission
Depending upon the type of MS a person has, they can have periods of remission, where the signs and symptoms of the disease seem to get better. This does not mean that they are cured of the disease, however, and these times should be enjoyed as a sort of reprieve when it is possible to get out and do more. Keep in mind, though, that sooner or later, the MS symptoms will return.
14. They are Sexual Beings like Everyone Else
Even in an age of rights for the disabled, many people are uncomfortable with the idea that people with disabilities have sexual thoughts and feelings — and are capable of sexual expression. While sex with MS can be more challenging, it is still possible for a couple to have a intimate and satisfying sex life even with this disease. Good communication between the sexual partners is very important — just as it is in any relationship!
15. They Can Still Have Children
Women who get MS are often diagnosed in their 20’s or 30’s — when they are still of childbearing age. And many women with this disease go on to have healthy pregnancies and give birth to healthy children — though often they must deliver by Caesarian section (C-section). Don’t assume that because a young woman has MS that she is infertile and not interested in having children.
So if someone you love has MS, keep these things in mind. Because as with many chronic diseases, the loving support of family and friends is vital for emotional health and a good quality of life.