Information and Resources

There's a lot of research going on into the various mechanisms of multiple sclerosis and research is looking promising for various new treatments in the future. There are considered to be many potential causes for MS alone. There are no definite causes known, there are potential genetic causes, environmental causes and lifestyle causes. Genetic causes are related to the genes that we all carry and they are known to be many different alterations in your genes which may predispose you to develop MS. For people with MS, their children do have a slightly higher risk of developing MS than children of the general population. To be able to develop MS, however, you have to meet what we would call a trigger factor and that is something either in the environment or an infection. There is also a link between vitamin D deficiency and developing MS. The further you live away from the equator, the more chance you do have of developing MS and the incidence of MS is much higher in Scotland than in the south of England.

Recently research has shown that two factors of lifestyle do contribute to the development of MS. Being obese, particularly in childhood, increases the risk of developing MS. Smoking increases the risk of developing MS and also the rate at which disability can be accrued. However, if a person with MS stops smoking, then that risk is greatly reduced. MS symptoms are caused by damage to the coating of the nerve, the myelin sheath, which means that the nerve impulses do not conduct properly. The nerves in the central nervous system are covered by a fatty coating and when the coating is attacked or damaged as a result of the MS, the impulses are not able to conduct properly. The areas of damage are known as lesions or plaques and occur in different areas of the brain, depending upon where the damage occurs, depends on the symptoms that will result.

Somebody who's been recently diagnosed I would say is very important to join a society so you can gain information about other people's experiences. For example, the MS Society has been particularly useful. I was put in contact with them by the MS nurses and I was then able to converse with people who've had similar experiences and of course, experience similar long-term problems with mobility or speech or cognition, emotional difficulties.

Personally, I would advise them to read as much as they can all about it. Be kind to themselves, allow themselves to get used to the idea and go through the different stages of anger, grief, all those kind of things, that they'll have to go through to kind of get to acceptance. But my personal view is that you go out there and you live your life to the best that you possibly can within the constraints of your illness.

I would say it is important for healthcare professionals to engage the patient in their own treatment, so they can gain ownership of it. Not only to answer questions as much as possible but to inform the patient that they don't know the answer to everything. My own GP was incredibly supportive upon my diagnosis, but she herself said, "We don't know much about it. As a GP, I don't know much about it." But subsequently, she's been more proactive about finding out about the disease and about the different types of MS and the possible long-term effects that it might have on me.

And see me as a person behind this label of MS really. I think that's really important across all aspects of healthcare. I don't think that the wider general public have a really good understanding about MS. They don't really understand what it is and they see you, for example, I can still drive. They see you driving and getting out of the car and if you look okay, they say, "Well, you look fine." And I think that's the general misconception that you might look fine and you might be able to walk a bit with a stick and drive a car, but they don't really understand what it is, not really.

With my wife's role, I personally don't see her as a carer. And we compromised on what we have to do. I was retired from work some years ago, and in doing so, I'm now at home a lot more. And so, for example, with cooking, I can manage to do somethings which are essential to the running of our household, for example, cook meals for the children, I can do shopping. But again, it very much depends. Certain days I'll be in bed for hours because I don't have the energy or I'm in too much pain to be able to move. It's important to have realistic expectations of what I am able to do, and I am lucky because our children are not very young so they can help me as well. I think the important thing is to be adaptable.