Tips for care givers of multiple sclerosis

Rajkumari Sharma Tankha

You know that brain is a master organ. Physical body does what brain tells it to do but do you know there is a medical condition wherein the physical body just cannot listen to the brain? The nervous system and brain do not communicate well with each other and the effect can be seen on any body organ in its failure to receive the command given by the brain.

Doctors call it multiple sclerosis — a potentially disabling disease of the brain and spinal cord. “In MS, the immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication problems between the brain and the rest of the body. Eventually, the disease can cause the nerves themselves to deteriorate or become permanently damaged,” says orthopedician Dr Raju Vaishaya. “No one knows how it happens and we have not yet found the cure for it though a lot of research is going on, on this,” he adds, “though timely detection can slow the progress of the disease and also help patient manage his/ her life better.”

Dr Vaishya also informs that MS is an auto-immune disease and usually people from young adults to middle-aged ones are seen to be affected by it.

I am sure many of you reading this are unaware of this disease. I too wasn’t till a friend approached me. Her husband was showing MS symptoms. My first reaction was fear. Yes, I felt scared to even listen to what she had to say, not because I didn’t empathise with her, I did, but because it chilled my bones to know that something like this can also happen, and that it can happen to anyone.

But after the initial fear, came the compassion for the woman. She has been a care giver for her husband for quite some time now. I tried getting into her mind, what all she must be going through, how must she be living her life? And then it occurred to me, the only way I can help her is by writing about it. But what? I am not a health care professional so I cannot write about the disease and patient management. There are nth number of qualified doctors who can do this much, much better than what I will write after googling about the disease.

Then it occurred to me — I must write something for the caregivers. How can an MS care giver maintain his/ her sanity? After all they are all humans, prone to human fallacies. No care giver can be a smiling angel all the time. There must be times when anger and frustration takes over their better senses. Aren’t care givers prone to psychological issues, stress, depression et al?

That was when I decided to delve deep. I spoke to a number of spiritual healers. Spirituality is my new-found love. Thanks to an ex-Army Major Dalbir Singh who enrolled me as a member of his spiritual group Beings of Light (BOL). In our monthly meetings, I learn newer things, and I must say, it has helped me become a better person.

So, what I am going to write now is about all of you care givers for the MS patients. Do not put your own needs on the back burner as doing so will lead to depression and resentment. It may make you even bitter.

Begin your day with mediation
A regular meditation practice can keep you stay relaxed and grounded throughout the day.

Exercise or do yoga
Exercise and yoga are both especially good for fostering your own health and reducing stress.

Listen to music
Music is a great stress buster. Switch on the radio and listen to songs, or instrumental music, whatever is your choice. It can change mood, manage stress and stimulate positive interactions.

Adopt a pet
Spending time with a pet does a lot of good.

Keep some time for prayers
Take some time out for praying every day. Doing so will not only relax your mind, but also take your mind off the problems at hand so that you come back to deal with those with renewed vigour.

Educate yourself
Gather all the information you can, about the disease. Knowledge empowers and can make you fully equipped to deal with the task at hand.

Connect With Others
Join the Multiple Sclerosis Society Of India. It works towards the welfare of the MS patients in India.
Network with other care givers. Hold regular meeting; physical meetings are always better, but you can also have online meets. Make whatspp groups to help each other. Talking with others can also help you see the situation from different angle.

Seek help
There is nothing wrong in asking your family and friends for help. Having a support group makes your life easy. Remember, most people are good and genuine want to help but they don’t know how to. Your seeking help will make them feel important and strengthen the bond.

Live your life
You only have one life to live. While I am not saying that you neglect the patient who is literally at your mercy but don’t also stop living your life. Go out meet your friends, enjoy a movie, and indulge in shopping — do everything that rejuvenates your life. These things will make you happy and when you are happy with yourself you can share that happiness with the patient. There is nothing worse for a patient than seeing a sullen care giver.

Don’t ignore your feelings
If you feel like crying, do so. It is cathartic. When gloom envelops you, seek professional help.

Promote Independence
Science and technology are very advanced these days. Look for technologies and ideas that can help make your loved one as independent as possible. It is good not just for you but is an ample morale booster for the patient as well.