30th May is World Multiple Sclerosis (MS) Day.
More than 100,000 people in the UK have MS. Most are diagnosed with MS in their 40s and 50s, many notice symptoms years before they get their diagnosis. MS affects almost three times as many women as men.
A substance called myelin protects the nerve fibres in the central nervous system, which helps messages travel quickly and smoothly between the brain and the rest of the body. In MS, your immune system, which normally helps to fight off infections, mistakes myelin for a foreign body and attacks it. This damages the myelin and strips it off the nerve fibres, either slightly or completely, leaving scars known as lesions or plaques.
This damage disrupts messages travelling along nerve fibres. As well as losing the myelin, there can sometimes be damage to the actual nerve fibres too. It’s this nerve damage that causes the increase in disability that can occur over time.
MS is a life long condition but treatments and specialists can help to manage the condition and its symptoms. The cause is not yet known and as yet no cure has been found but research is progressing fast.
The central nervous system links everything your body does, so MS can cause many different types of symptoms. The specific symptoms that appear depend on which part of your central nervous system has been affected, and the job of the damaged nerve. That’s why MS is different for everyone.
Types of MS
Care and support
Living with advanced MS is very complicated for everyone involved, including carers and family. It’s essential that everyone involved has the support they need, and a complete care package is provided by the various services available.
Such a care package should take care of physical symptoms, psychological difficulties, as well as delivering financial and practical help.
In reality, not everyone finds they can access all the specialists they need, but that shouldn’t prevent you from pushing for access to what is available in your area. Ask for a referral from your GP or another specialist.
Community based services provide support in your home and can also be a great help to people severely affected. such services may include district nurses, health visitors and GPs.
Social care is a particularly important source of practical help. It can provide aids and adaptations to the home, personal care services to help with daily tasks and needs, day care and respite care or residential care.
Respite care is short-term complete care designed to give both carers and service users a break from the usual routine of caring and being cared for.
People who are severely affected by MS often say that their quality of life is greatly reduced. Depending on others for care can mean life becomes isolated and hobbies and interests are sidelined. Families, carers and friends can also find that stress and frustration increase. These problems can be minimised if everyone makes an effort to make sure that quality of life is maintained. It’s important to keep up interests and social networks.
Day care centres also often provide activities, as well as opening up new social networks, while also providing care on site. Your local MS Society group should be able to advise on what is available in your area. Looking after your social life can also keep you connected to relationships outside your immediate family and carers, as well as helping to . prevent feelings of isolation and depression.
Perhaps Gardiner’s can help you or a loved one living with MS?