MS Home Care Guide
Multiple Sclerosis care at home is a life-changing service for both those suffering from MS and those already caring for someone with multiple sclerosis. Live in care specialists are able to support family members while allowing the client to maintain their independence.
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MS can affect both the elderly and the young. Here at the Live in Care Company, we provide various forms of specialist MS care for those of any age or condition.
Read more about how live in care can help with certain health conditions by clicking here.
What is Multiple Sclerosis?
Multiple Sclerosis (also known as MS) is a neurological, lifelong condition that is connected to a diverse group of symptoms, such as issues with movement, balance, vision, or sensation. It can develop at any age but is typically diagnosed in people in their 20s to 40s. In fact, MS is one of the most common causes of disability in young adults.
MS is an autoimmune disease, meaning that the immune system will attack healthy parts of the body. In this case, it’s the protective covering over the brain and spinal cord’s nerves and fibres. Damage can be found throughout the whole central nervous system, causing significant communication problems between the brain and the rest of your body.
What does living with MS mean?
The experiences of those living with MS can vary greatly. It’s possible to work, go to school, and continue with your lifestyle after a diagnosis. MS live in care, or respite home care can help those impacted by MS continue to live life as normally as possible. Some aspects of the disease are predictable, and learning what to expect can be helpful.
The damage caused by multiple sclerosis may lead to reduced capacity in many day-to-day functions. The main symptoms of Multiple Sclerosis are:
- Difficulties with walking
- Issues with vision, such as blurred vision
- Incontinence or issues with bladder control
- Tingling sensations or numbness in different parts of the body
- Cognitive problems, such as issues with thinking, learning, and planning
- Issues with balance
- Poor coordination
- Muscle spasms and stiffness
Is MS curable if caught early?
There is no cure for Multiple Sclerosis. However, catching it early can still be helpful, and early treatment is the best way to slow MS progression. Treatment can reduce inflammation, prevent some damage, and help you manage symptoms in the future. There are disease-modifying treatments that can reduce the frequency and severity of a relapse, and supportive services such as live in care can make living with MS much easier.
What are the four stages of MS?
MS can vary in its symptoms and severity and there are four main stages that the disease tends to follow: CIS, RRMS, SPMS, and PPMS.
Clinically Isolated Syndrome (CIS)
CIS is the first episode of symptoms a person with MS will experience. It is a neurological symptom that can’t be associated with any other cause and lasts for at least 24 hours. This may be seen as a tingling or shock sensation that goes down the back and neck, numbness and weakness, or blurred vision due to an inflamed optic nerve.
A CIS doesn’t necessarily lead to MS, but it is an early sign. An MRI may show that there have been other episodes in the past. If that is the case, MS may be diagnosed.
Relapsing-remitting MS (RRMS)
RRMS is the most common next step in MS. It affects about 75 to 85% of people who are diagnosed and follows a pattern of symptoms worsening and improving. Those with RRMS will experience periods of relapse and remission.
A relapse occurs with a flare-up of symptoms that will worsen over the period of a few days to a few months. Then, gradually, the symptoms will recede. These moments between the relapses are known as remissions and they may last for years at a time. Over the course of decades of relapses and remissions, MS may change and become more complicated.
Secondary-progressive MS (SPMS)
It is likely, though not certain, that those with RRMS will eventually progress to SPMS, normally within ten years of the initial diagnosis. SPMS is a more aggressive form of MS. Symptoms will still be experienced in cycles of relapses and partial remission, but they will be more infrequent and less obvious. Instead, the disease will steadily and gradually worsen.
Primary-progressive MS (PPMS)
This type of MS is much rarer, and only about 15% of people diagnosed with MS will experience PPMS. Those who are diagnosed will experience a gradual worsening of symptoms from the start. Issues will grow and accumulate. While there will be no remission period, there may be moments of stabilisation.
Disabilities from MS will vary depending on the person, but they can be especially difficult for elderly people. Services such as live-in care can be very helpful and make symptoms much more manageable.
Can MS symptoms come and go hourly?
A common MS experience is fluctuating symptoms and periods of relapse and remission. However, it is possible to experience symptoms suddenly and quickly, lasting only a few seconds or minutes before disappearing. This can happen once, a few times in a day, or maybe even hourly.
These sudden bursts of symptoms are sometimes referred to as attacks, episodes, clusters, and surges. However, symptoms that come and go in this manner are commonly known as paroxysmal symptoms. They may be more painful than normal and are caused by damaged nerves sending sudden and inappropriate electrical signals.
Only around 3 in 100 people with MS will experience paroxysmal symptoms, and they tend to manifest in the earlier stages. However, if you are suffering from them, it’s thought that making a symptom diary can help you identify triggers that you can avoid in the future.
What care does a person with MS need?
Providing the right care and support for those suffering from MS can significantly boost their quality of life, helping them live the best life and live with their condition. For example, self-care is incredibly important for both the physical and mental health of someone living with MS. If someone with MS is losing the ability to carry out personal care, housework and cooking, the support of a home carer can be the perfect way to manage the illness effectively without too much disruption.
Do you need a carer if you have MS?
Not all people with MS will need the support of a carer. However, most people with MS will eventually need the support of family or friends. Its possible disability equipment or home adaptations may be better suited for those whose balance and coordination are being affected. You can request a care needs assessment to find the best form of care for you or your loved one.
MS care for children
Multiple Sclerosis commonly develops in younger people, and although it is rare, it can develop in children and teens. Although the symptoms and warning signs will be similar to the ones in adults, there are some differences. For example, mood disorders are much more frequent in children with MS, and they may experience severe depression, anxiety, and fatigue.
An MS diagnosis for a child can be difficult to adjust to. However, it’s important that, as far as possible, they keep up the same activities, hobbies, and friendships as normal. Most children with MS will not experience significant physical disabilities for at least 20 years after their diagnosis. However, they may need to learn how to do things differently and receive special support from a health professional like an occupational therapist.
It can sometimes be overwhelming for parents to care for children with MS. Respite home care is an incredibly helpful service that can mean that family members and primary carers of children with MS can take a well earned break. For more information on respite care, see our blog, How Respite Care at Home Works and Why It’s Important.
MS home care for young adults
A diagnosis of Multiple Sclerosis can be quite isolating for young adults, especially if they require more advanced forms of care. For example, care homes are often designed with elderly people in mind. If you have MS in your 20s, you will have significantly different social and psychological needs. Living in this kind of space will negatively impact the mental health and quality of life of young adults.
Live-in care is much more appropriate for MS in your 20s. It allows young people to continue on with their lives through a personalised care plan. They can have more control and focus on maintaining relationships, continuing with school or work, and having their own hobbies or activities.
MS in adults and elderly people
Multiple sclerosis can be as equally life-changing for older adults as it is for those in their 20s and younger. It can put a strain on you, your job, and your relationships. Dealing with worsening symptoms and the deterioration of your strength can be frustrating for you and your family, spouse, or partner. It’s important to be honest with those closest to you and to ask for support when it is needed.
Can you work if you have MS?
Many people with MS are able to continue working. In fact, making big life changes, like quitting your job after a diagnosis, could make your symptoms worse. That being said, your work-life balance may have to look a little different and you should take care to look after yourself to avoid potential problems. For example, you may:
- Ensure to never skip a lunch break.
- Avoid travelling during times of heavy traffic.
- Do the most important work when you are strongest.
You may also need to start working part-time, change roles, or stop working altogether if your symptoms become unmanageable.
What is included in MS home care for adults and the elderly?
Multiple sclerosis can be more dangerous in elderly people as they are more prone to complications like pneumonia, urinary tract infections, blood infections, and bacterial skin infections. The increase in age also makes recovery from a relapse more difficult. Older people with MS will need much more support, and a live in carer for the elderly can be very helpful.
Multiple sclerosis care at home can assist with:
- Meal preparation
- Personal care
- Keeping the home clean and safe
- Helping with shopping
- Transport to doctors appointments/ hospital
- Help taking medication
MS live-in care allows elderly people to live in the comfort of their own homes and enjoy the highest quality of life possible. They will be supported to live in their own communities and safely enjoy their hobbies. Our relative’s guide to live-in care will provide more information on how to know if your elderly loved one needs live-in care.
How much does MS home care cost?
The cost of an MS live-in carer can vary depending on the level of care that you require. On average it may be about £950 a week. However, there are resources and financial aid available for those diagnosed with MS from the NHS, charities and even your local council.
See our Elderly live-in care cost guide for more information on help with funding, and cost-effective options.
Multiple Sclerosis resources and help
Even if you are receiving support from a live-in carer, reaching out to charities and support groups can be helpful. There are many resources specifically geared toward helping those diagnosed with MS. The two main MS charities in the UK are the MS Society and the MS Trust.
These charities offer advice, support, and guides on their website covering various topics on life with MS such as:
- How to upkeep your working life with MS
- Completing your education with MS
- Tips for children with MS
- And MS resources for young people
There are also online communities, such as Shift.ms, which provide talking spaces for young people with MS.
For more information on live-in care and other supportive services for people with MS, see our care guides and our live in care guide. If you have any questions, feel free to contact us at firstname.lastname@example.org or call: 0118 449 2373.