The most important step in caring for someone with multiple sclerosis is to learn about it.
Caring for someone with multiple sclerosis isn’t easy. You have to be wary of their mental, physical and emotional needs while supporting them all along.
When someone is first diagnosed with this condition, it can be quite scary for you and your family. Thus, the best thing to do is to learn about this problem as much as possible and continue your support towards the one suffering. This little guide will help you understand and train you for the same.
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Multiple sclerosis is an autoimmune disorder or condition in the central nervous system. In this condition, the body attacks the myelin sheath, a protective layer or membrane covering the spinal cord.
The sheath is responsible for sending and receiving signals to the brain and back to the body. A healthy myelin sheath allows efficient movement of the spine – the same is not possible for those with multiple sclerosis.
If it remains unchecked, the sheath gets thinner and starts breaking down with time, damaging the nerve fibers and eventually dying off. The body’s functions are thus, notably affected and lesions often grow on the brain.
The symptoms of multiple sclerosis relapse and remit from time to time. However, some of the most common and notable ones include –
The moment a person moves their hands, legs, or any other limb of their body, they feel tremors. Earthquakes also happen when someone is standing or even sitting. Many people also deal with muscle spasms, which is a symptom of this problem. Physical therapy, regular movements, and a good diet can help a person deal with them better.
Many people feel unexplainable discomfort or difficulty swallowing food and beverages in this condition. This condition, known as dysphagia, usually occurs in older adults but can happen to young people. Modified diet, as recommended and designed by the patient’s patient’s doctor, helps in coping with this symptom.
People dealing with multiple sclerosis are prone to feeling tired all the time. However, in some, fatigue can come and go, while in the case of others, it can be completely present most of the time. One can also experience depression, inflammation, anxiety, brain fog, overworked muscles, etc., as the side-effects of fatigue.
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One of the most noticeable symptoms of multiple sclerosis is a double or partial vision in one or both eyes, especially when multiple sclerosis flares up. Vision loss and Nystagmus tremors are also symptoms of this condition.
Trouble balancing the body
The coordination of the body is negatively impacted due to the problems in the spinal cord. It is worse in older people since their mobility and agility is already lower due to old age. It is essential to install tools like mobility aids and shower chairs to avoid falling. Dizziness can also be a part of this symptom, disrupting the body.
Some other symptoms of this problem include itching, burning, tingling in hands and legs, difficulty speaking, headaches, loss of bladder and bowel functions, etc.
Cause and Cure
The exact cause of this condition isn’t known. It is autoimmune, which means your own immune system attacks the brain and spinal cord. This is why there is no cure to heal multiple sclerosis in the scientific world.
However, the symptoms and discomfort can be controlled via medicines, physical therapy, healthy diet, proper sleep and rest, exercise, body movements, etc. Many people also opt for speech therapy and immunotherapy.
How To Care for Someone With Multiple Sclerosis
A diagnosis of multiple sclerosis can be devastating for the patient and their family. An uncertain future, regular mood swings, depression, and anxiety, together can be tough on the patient and thus, require a lot of patience and understanding on your part.
The good thing is that with a bit of experience and knowledge about multiple sclerosis, you can make it easier for your loved one to go through it.
People with multiple sclerosis suffer from a variety of body and facial pains. Trigeminal neuralgia, MS hug, and other debilitating pains accompanied by burning, twitching, tingling, and numbing sensations make it worse for such individuals to go through life usually. Even a light touch, temperature change, body postures, etc. can trigger these pains.
You can support them by accompanying them to the doctor’s office, therapy sessions, scheduling their medications, etc., to provide comfort to them.
You can also get them warm compresses, pressure stockings, and loose clothes which will soothe the pain. Identifying triggers and helping the patient avoid them can also help make things easier for them.
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Bladder and bowel problems
When the sheath membrane of the spinal cord is damaged, it affects the bladder and bowel movements of the person. The bladder can either become overactive or completely shut down in some cases.
You may lose control or have discomfort in passing urine. The same is true in bowel movements– you either lose possession or feel constipated.
A caregiver can help in many ways: medication and doctor visits, helping the patient balance their body while going and coming back from the toilet, getting adult diapers in case of incontinence, etc.
Movement and balance
Muscle tightness, spasms, dizziness, vertigo, etc., contribute to losing the balance of the body in multiple sclerosis. Thus, it is essential to be around the patients as much as possible, especially if they are old since their falling chances are higher.
The best way to support them is to provide them with tools like bathroom chairs, mobility aids, grab bars, etc.
Living With Someone With Multiple Sclerosis
The most comforting thing that a caregiver can do for a person who has multiple sclerosis is to stay with them, at least for a few months, even weeks.
Living with a patient will also help you understand what home modifications you need to do to comfort them. Building ramps, adding grab bars and handrails wherever possible, installing walk-in bathtubs and other such small modifications can help avoid major disasters such as falls and injuries.
While some of these alterations can be expensive, there are things that you can do for them for free. Some days, they will need more of your help, support, and assistance, while other days, they will feel healthy and happy.
You have to be in charge of noticing even the subtle changes and triggers in their body and mood, respectively.
You must learn to adjust to the new environment and ways to deal with their condition. If you do not want to be present around them 24/7, you can perhaps get another apartment in the vicinity of the patient.
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Be there for them but give them space.
A note or suggestion for those moving in with multiple sclerosis patients is that the physical changes in their body can get quite uncomfortable.
So, even if you want to be supportive and of their assistance, it can get on their nerves. It can be seen as intrusive by people who have multiple sclerosis and can thus affect your relationship, even if you mean good.
Trying to perform all their tasks and run their chores makes them feel like they aren’t enough for themselves and steals away their sense of accomplishment. Give it time and do the things they ask you initially. You will both learn to adjust to this new role with time.
Studies have shown that good communication and caregivers knowing where to step back are the key ways to settle into this new relationship.
Be organized in your tasks
Below are some ways to organize your tasks to make it easier for you and your loved one both to take care of them –
- Keep medication rack or log to reel in the schedules, symptoms, changes in the body, mood swings, etc.
- Keep the medical and legal documents in one place, so you do not have to struggle at the time of visiting the doctor.
- Mark the calendar with all important dates, such as check-ups, appointments, medicine changes, etc.
- Save significant contact numbers, emails, and hospital addresses on your phone, just if you need them.
- Write down the individual’s daily routine to not skip any of the essential activities. Make it a day-to-day activity.
- Keep a list of all the changes and essential questions and doubts you want and clear on your next appointment with the doctor.
Supporting People With Multiple Sclerosis
The number one thing to do to support them after moving in their house or close to their apartment is to educate yourself about their education and your role as a caregiver. You can join related groups, research online, and read books about the same.
An essential part of your education on multiple sclerosis is learning about all things you should avoid saying to them. Some of the phrases that you shouldn’t bring forward can look like, “It is nothing, you are fine,” or “I completely forgot that you are sick, you look so good,” or “I know people who are living a normal life with multiple sclerosis, it is no big deal.”
While your intentions are good, the affected individual might not take it that well. Thus, instead of saying the above sentences, you can replace them with, “How are you feeling”, “MS is different for everyone; you should work with it the way you want to,” or “Let me know how I can help to lessen your discomfort.”
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Showing love to someone with multiple sclerosis
There are several ways to show your loved ones that you are with them to fight their unfortunate condition. From keeping track of their medicines and vitals to managing incontinence and depression, you can show them your love and support in multiple, non-offensive ways.
Group therapies and professional counseling
It is exhausting to deal with the physical, mental, and emotional pressure of a disease that has no cure as yet. Thus, it is essential to keep one’s mind and heart open and light when fighting an unwanted bodily condition.
This is where the role of therapy and counseling steps in since these activities make us connect with ourselves deeper. Apart from setting up a strong connection with oneself, counseling and sitting with people who are going through something similar gives us courage, even better, when there are success stories.
It is preferred to connect with a good therapist or join online counseling groups to connect with like-minded people. This works both ways, and the caregiver and the individual can join these resources to learn their condition better. Some of the best online places to find such groups and therapists include the Caregiver Action Network and the National Multiple Sclerosis Society.
Take care of yourself
You cannot be there for your friend or family dealing with this mental condition until and unless you take care of yourself. It can be very hectic and exhausting on every level to be a caregiver.
Thus, you must notify the signs of burnout in your body – exhaustion, feeling sick, upset stomach, unexplainable sadness, anger, irritability, feeling anxiety, depressed thoughts, stuck energy, etc. are signs that you are on the verge of a breakout and need to take a break.
If you are afraid of the condition of your friend or family member who has multiple sclerosis, you can hire a professional for the time you will be absent. You can even ask a family member or a friend to look after the person for a while until you are rejuvenated and recharged to return with total energy.
During your break, you should indulge in the following activities to help yourself recover faster.
- Creating art
- Massage therapy
- Water therapy
- Playing or being around pets
- Music therapy
- Good diet
- Enough sleep and rest
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The bottom line is that living with multiple sclerosis can be challenging, not only for the individual but also for their caregiver. Thus, it is the responsibility of both to work their way through it and live happily and with acceptance.
Yes, it will be physically, mentally, and emotionally exhausting. Still, the only way out of it is to remain strong and do everything in your hands to be as healthy as possible. Rest assured, both the caregiver and the individual will see positive changes in the condition.
We hope this article gave you useful information in the fight against MS. If you have any questions or queries, please drop us a mail or a comment and we will quickly get back to you. And if you liked the content, please share it as much as possible on your social media handle and groups.