Supporting Someone With Multiple Sclerosis
Life can look very different for those living with multiple sclerosis, but everyone’s journey will be unique. As a loved one, your priority will likely be prioritising their emotional, physical, social and practical needs as they cope with their diagnosis.
Supporting someone with multiple sclerosis can be challenging. It can include learning as much as possible about the disease, keeping them active and doing things they love, helping them with daily activities, accompanying them to doctors appointments, listening and being patient, and making life as normal as possible for them.
Whether you have just learned of a multiple sclerosis diagnosis of someone you love or you have been providing a patient with MS support for a long time, there are a lot of important factors to consider. The good news is there are treatment options, such as supported independent living in Sydney, to manage the symptoms of MS, and accessible options like NDIS transport to assist with appointments and activities. The support and care from loved ones will make the difficulties of the illness that much easier to digest.
What is Multiple Sclerosis?
Multiple Sclerosis, usually abbreviated as MS, is an unpredictable, chronic disease that affects the central nervous system (consisting of the brain and spinal cord). The disease presents itself when the immune system attacks nerve fibres and the myelin sheathing. (Myelin sheathing is the fatty substance that surrounds our nerve fibres.) The attack causes inflammation, which in turn affects nerve cell processes and alters electrical messages to the brain. Eventually, the disease can cause permanent damage and deterioration of nerve function.
MS affects each patient differently and can present with a wide range of symptoms depending on the location of the affected nerve fibres. Your loved one may find themselves mildly affected while others may lose their ability to write, speak or walk. Symptoms may include numbness or weakness in one or more limbs at a time, typically on the same side of your body, tremors, a lack of coordination, or problems with your bowels or bladder. Some patients also experience an electric shock sensation when bending the neck forward.
MS is a neurodegenerative disease with many different subtypes:
- Relapsing-remitting MS – the most common type of MS which can come and go with different symptoms for periods of time.
- Secondary progressive MS – relapsing-remitting MS can develop into this, where symptoms accumulate and worsen without any remission.
- Primary progressive MS – usually diagnosed later in life and presents with symptoms such as difficulties with walking and balance.
- Progressive relapsing MS – the least common type of MS, where symptoms can vary depending on the area affected.
- Benign MS – When someone has experienced MS for at least 15 years with no evidence of it worsening.
- Balo’s disease – this has been connected to MS and may be a rare form of the disease.
- MS in children – MS usually occurs in adults, but children are being diagnosed with MS more frequently.
What is Everyday Life Like for Someone with MS?
Some people can remain symptom free with MS for years. However when symptoms develop they can be both physically and mentally overwhelming. People with multiple sclerosis often experience constant fatigue which can affect all aspects of their life. Including brain function, reduced productivity and the ability to partake in activities.
A lot of people with MS experience a high prevalence of chronic pain which may stem from damaged nerves, poor gait mechanics or other structural abnormalities such as arthritis or spasticity. Pain is an often unrecognised symptom of MS, however it has the ability to cause major disruptions in daily living. It can lead to debilitating psychological functioning, low mood, lack of sleep and cognition, all of which can affect the mental health of someone living with MS.
How To Support Someone With MS
Finding out a loved one has received a multiple sclerosis diagnosis can be scary for everyone involved. You may both find yourselves in a position of not knowing what to say, what to do and how to move forward with this diagnosis.
Information is key
One of the most important things you can do is to research MS as much as possible and find out as much as you can about the disease. Listening to them, understanding more about what they are going through, speaking to experts and family doctors, as well as hearing from other people living with the disease can put you in the best position to support your loved one with MS.
Be available for them
You may find your loved one needs space to process their diagnosis, especially if their physical symptoms affect the way they would normally live their life. The best thing you can do in these circumstances is to hold a space for them when they are ready to reach out to you. Make sure they know how much your relationship means to you and that you’ll be there for them when they need you.
Adjust to a more comfortable lifestyle
If going out and partaking in your usual activities is no longer conducive to your loved ones symptoms, you could arrange to have a meal at home, watch a film, have a board games night or find other less strenuous or pain inducing activities.
What to expect when caring for someone with MS?
Multiple sclerosis symptoms can vary greatly from person to person and at different periods throughout the disease. Some types of MS may include periods of remittance and relapse so it’s important to be aware of how your loved one is feeling at any given time and to communicate with you the amount of support they may require.
Somedays you may need to help with everyday tasks such as household chores, child care, grocery shopping and meal preparation. Other periods of chronic symptoms may see your loved one require some help with basic care such as dressing, feeding and bathing.
Making adjustments in the home can help your loved one to be more independent which will be best for both of you in the long run. Adjustments such as ramps, wider doorways, bathroom equipment, lower kitchen cabinets and stair railing may help your loved one to move around and partake in daily activities easier. Speak to an occupational therapist about recommendations for specialised equipment in the home.
A healthy lifestyle such as cooking and eating well, exercising, meditation and good sleeping habits can promote the easement of symptoms in many illnesses and MS is no exception. As a caregiver this is something you can join and encourage. Thankfully, we can all benefit from healthier habits and it’s easier to commit when the whole household is encouraging each other.
Your loved one may need your help keeping track of medical appointments, driving to visit physicians and other professionals. Consider yourself part of the medical team, research all you can about MS, ask for guidance and tips from the doctors to use at home.
Expect the unexpected
The course of MS is unpredictable for everyone and the uncertainty of it often presents as the biggest challenge. One day your loved one may feel perfectly ok and the next day they may be experiencing extreme fatigue. Creating routines is important but communication and creating the ability to be flexible is key to managing this unpredictable disease.
What is the life expectancy of someone with MS?
In most cases multiple sclerosis is a chronic but not a fatal condition, however there is no cure for the disease. Many people with MS experience symptoms that cause pain, discomfort and fatigue however, most are likely to not experience extreme disability in their lifetime.
People with MS tend to have a shorter life expectancy of around 7 years than those who don’t. Some people with MS may succumb to complications associated with the disease such as infections, cardiovascular disease and accidents. Treating these complications, the symptoms associated with MS and living a healthy lifestyle has been shown to greatly increase the life expectancy of someone with MS.