"Mind can accept any boundary anywhere.But the reality is that,by its very nature,existence cannot have any boundary, because what will be beyond the boundary-again another sky.That's why I'm saying skies upon skies are available for your flight. Don't be content easily.Those who remain content easily remain small: small are their joys,small are their silences,small is their being.But there is no need! This smallness is your own imposition upon your freedom,upon your unlimited possibilities,upon your unlimited potential."Says OSHO-the Zen Master

Here are some simple and effective guidelines on how to live with MS

Try Laughter;

Laughter is one of the greatest therapies of all times. It may not cure your problems - but it helps you to accept them and live with them. Smile and the world smiles with you. A sense of humour helps in making it easier to accept your difficulties and it makes all those around you happy. Indian laughter therapy is a highly recomended process - learn it and use it - and the world will seem a much better place - and it will be make it to easier to deal with MS.

Talk and share your thoughts with all those around you. It always helps if you are candid and honest about your feelings and your pain and difficulties.Do not always put up a brave face - let those who care about you know how you are feeling. They are there to help and provide support to you.

Do not hesitate to ask for help, wherever you are and whoever you are with. Everybody does not know about MS, and therefore you require telling them; all the more when you have mood swings.

Do not despair, for tomorrow may be easier for you.

Living with MS is often difficult, complex and tormented. Most of the time you would only seek to grieve. This is a normal aspect of living with MS. However you need to learn to adapt with this new part of your life. You need to accept these changes and adjust to them. Above all, you need to learn how to live with MS with a certain equanimity and acceptance.

You will live a different life from what you have known before, but it is definitely not over for you. Divert your energies towards your well-being and and do this with complete determination. Not everyone with MS ends up in the wheelchair. Our family, in India, are our biggest support and strength. Build on these blocks of love and support. The biggest boon for us is that we have the joint-family system in India, and our families CARE. YOU ARE NEVER ALONE!

Your body should not be your problem. Listen to it. It’ll tell you when to do various tasks in order to adapt to your changed life-style; rest when required and set your schedule at the pace you are comfortable with. Do not hesitate to ask for help and do not needlessly overexert, for it could take a toll on your already fragile health.

The Multiple Sclerosis Society of India offers useful information, help and guidance. Do not hesitate to approach them. They are always there to answer any queries, provide any guidance needed and to be your constant friend.

Look good to feel good :
Life is a challenge Set yourself a challenge to achieve each day, however small. Try not to let MS rule your life, although this is easier said than done! Keep in touch with people who do not have MS and don’t allow yourself to be defined as an MS ‘sufferer’. You are a person who happens to have MS – it does not change the essence of who you are.

Don’t allow yourself to feel isolated. It is always helpful to talk to other people with MS, either face to face, on the phone or over the Internet.

Conserve your energy whenever possible. If you have to go upstairs to use the bathroom, save up other chores that need to be done upstairs, to avoid having to climb stairs again and again.

Never feel ashamed of having MS – it is a condition that you happen to have and not something you’ve brought on yourself

Be realistic and know your limitations, but don’t aim too low! MS is not an excuse for ducking out of life! Concentrate on what you can do, not what you can’t. Try to make chores simple - if you need to pick up a paper from the floor, wet your finger tips so as to make it easy.

Tell your family to provide you with a cordless phone or even better, a mobile which you can hang from your neck. When family and friends telephone, ask them to leave the phone ringing for longer than normal, to allow you time to answer. Also, if possible invest in an answering machine. One of the cheapest and effective alternatives is to keep a call bell next to you so as to draw the attention of your family members.

Select sensible clothes and footwear rather than fashionable clothing and footwear. Do wear clothes that make you look good - this will help to uplift your spirits. Purchase clothing that looks brigt and cheerful, and make you feel and look good. Make special efforts to look good - even if you are feeling low, it brightens your mood and alsothat of the care-givers around you.

Velcro fastenings are much easier to manage than buttons, zips and laces. If you use a wheelchair, a Kaftan/Kimono or wrap around gown or a short kurta /t-shirt/Shirt with Velcro with sarong/shorts! – can be some sensible alternatives to Salwar - Kameez, Saree - blouse, Kurta - Pajamas or Shirt - trousers making it easier to go to the loo or change. Keep yourself cool by wearing soft cotton wrinkle free fabric. We live in a hot country so learn to remain cool always.

Use simple and light back packs rather than hand-held bags – they leave both hands free and don’t throw you off balance Enter contact details of friends and neighbours onto your mobile phone and diary so that you can call for help if the need arises.

Don’t be embarrassed to go to the front of the queue for the disabled toilet. Make use of “Dabba” System – packed fresh hot food delivery – it’s not just for elderly or single working people!

If you are net savvy, shop online for food and clothes or get your family and friends to help you in doing this.

The Internet can be a lifeline for anyone who is feeling isolated or who needs access to information or services. Ability Net can help if your hands are weak An electric toothbrush is now easily available in India and is often easier to use than a manual one.

When you take a bath or shower, start with luke warm water and reduce the heat gradually. If you have loss of feeling in your hands, tell a member of the house to check the temperature of water. While shampooing tell someone to pour water for you or use a shower so that it does not tire you.

When you have a condition like MS, your independence, becomes even more precious. Make the most of the support that is available and plan ahead to avoid the unexpected.

Learn to drive if you don’t already do so. You may not become disabled ever but it is better to be independent. All cars can be converted into simple hand controlled cars with hand accelerators and clutches - contact your nearest MSSI-chapter for help. Having access to a car, powered wheelchair or scooter can give you far greater freedom than you ever visuakised. A plastic flat cushion on the car seat can make it easier to turn round.

As India is a warm country always keep a water sprayer in the car and in your room to cool you down or keep sponging your hands and face with cool wet towel from time to time.

Wheelchair mobility training is available in big cities. Make it a point to go for training to make yourself independent - to know more contact you nearest MSSI - Chapter. In some big cities of India you can borrow electric wheelchairs, making it easier for you to move around to your heart’s content!

Plan ahead before you go out: find out about accessible WCs, ramps and lifts etc to avoid unpleasant surprises.

All airports and stations should have ramps available to help you to get on and off planes and trains. Let the airport or railway staff know in advance if you will require assistance. Once they are informed the railways and airport authorities can allocate a seat with extra leg room and closer to the toilet and entrance.

If you have a disability certificate, do not forget to avail of discounts for you and the attendant.

If you are going somewhere special such as a restaurant or concert, phone ahead to see whether they can offer priority parking or special seating arrangements Since MS is an erratic condition. Symptoms can come and go, be prepared to adapt to changing circumstances

Be honest with your doctors and specialists about your symptoms. If you are having a good day when you see the doctor, describe your symptoms on a bad day. Don’t forget to tell them how you feel.

Develop a positive relationship with your GP, who can ensure that you receive the best possible care.

Ask your local MSSI representatives if there is a MS specialist nurse in your area and, if so, ask to be referred.

Note down any questions you have before your appointment and take a pad of paper so that you can make notes. It also helps to take somebody along with you. You may disagree with your GP or neurologist, be open with your opinion! You are the person who knows his or her body the best and you are the person who knows about your MS situation intimately.

It is not necessary that you go in for professional counselling but if there is a friendly person willing to spare the time to talkand listen to you, talk to him or her to your hearts content. A shared problem or load is always a lighter load. MS is often ‘invisible’, ie it is not obvious to others, so don’t give up if somebody in authority doesn’t believe that you need help. Keep fighting for your rights. If you have someone you depend on for help, make sure they also have access to the support they need.

MSSI assists people with disabilities to make adaptations to their home . Regular physiotherapy can often be helpful. Most of the MSSI Chapters provides physiotherapists either free or at a nominal cost, two to three times a week at your home. Do not hesitate to take their help.

If you have double vision, wear glasses (plain glass is fine) and cover one lens with tape or ask about plastic prisms for your glasses. Fatigue is a common symptom of MS and not just a sign of feeling low. If you experienced bladder or bowel problems, ask for a continence expert – these problems can be successfully managed and a Urologist can provide a great deal of valuable advice and support. Learn singing, it can help relieve the symptoms of choking and it is also good therapy for your speech and spirit.

Doctors are very busy, so in order to make sure that you get the most out of your appointment jot down all the points you need to know. Take a family member along with you for an appointment with your doctor or nurse, do not feel pressurised or rushed.

Do not get nervous if some new symptoms appears which you are not familiar with. Every new symptom is not caused by MS. Keep a record of when these symptoms appear and how long they last. If you have swollen feet and legs, put your feet on a table or keep a foot rest upto your waist level, use pillows under your feet while lying on the bed.

Yoga helps MS people tremendously. Spasticity can also be controlled by changing position and posture. Bolster pillows could be kept under your knees when you sleep sideways .

Do a few simple stretching exercises in bed before you get up in the mornings. Done regularly, these will make a real difference. Learn “Mudra Yoga” , you can do it very easily and it is very beneficial. Regular Yogic breathing exercises can do wonders for your body. Rhythmic breathing also helps you to control mind and body.

Specific therapies suggested which may be helpful for some MSPs include:

• Yoga
• Acupuncture
• Aromatherapy
• Homoeopathy
• Hyperbaric oxygen
• Massage
• Meditation
• Reflexology
• Reiki
• Music Therapy
• Chanting

The above alternative therapy may work differently in each case, some practices may suit some and some practices may not, so you should try as many as possible to find which one suits you the most. Always learn from an expert after sharing your medical record with him. In India many of these therapies such as Yoga are easily available and at very low costs.

There is no diet that will treat or cure multiple sclerosis, however there may be some connections between MS and diet. People who eat too much saturated fat, processed lunch meats and sausages or have low levels of vitamin B12 or vitamin D may be at a higher risk for multiple sclerosis.

Ask your doctor or qualified dietician if you should follow a particular diet. Whenever you cut down on dairy products, you will need to replace it with some other food so as to ensure that you obtain calcium from other sources Extra body weight tells on your legs and knees, so follow a healthy lifestyle and exercises to keep you in shape. To increase nutritional value, eat fresh food wherever possible and cook vegetables lightly or eat them raw. Avoid excessive tea or coffee, particularly if you experience bladder problems, and replace tea or coffee with fresh cool lime juice. Ginger and mint are known to help relieve nausea.

For a balanced diet include items from all five food groups: carbohydrates (Chapati, Rice and potatoes); fruit and vegetables; dairy products; meat, fish and alternatives; fat and sugar. Eat lots of dark leafy vegetable; reduce intake of sweets and saturated fat; eating 5 Almonds and “Tulsi” (Holy Basil leaves) every morning is good for your nerves. Vitamin B12 is found in animal products such as meats, fish, dairy products and eggs. Vitamin D is found in fortified milk and cereals, but your body can make most of the vitamin D you need when your skin is exposed to sunlight. Both vitamins can be taken as dietary supplements as well.

There is some evidence that reducing saturated fats and increasing polyunsaturated fatty acids may be of some benefit to people with multiple sclerosis. You can do this by eating more fish, lean poultry, fruits and vegetables and less fatty red meat and processed meat. Be sure to eat at least five servings of fruits and vegetables every day and choose whole grains whenever possible.

A generally healthy diet helps MS people a lot though there is no proven connection between MS and a Healthy Diet.

Managing Yourself :
"In tough times you will always find two hands eagerly waiting to help you and those hands will be at the end of your own arms."-John F Kennedy.

There are numerous sources of advice and information. Ask your closest MSSI Chapter, they can be very helpful in terms of supplying information and assisting you with adapting your home.

Use gloves to protect your hands if you use a wheelchair. Cycle gloves are cheaper and last longer than wheelchair gloves. In warm countries, one can get special cotton gloves made for the purpose. Fix a holder for crutches or walking stick to your wheelchair so that they are on hand whenever you need them You may wish to consider a four-wheeled walker with a seat. These are portable, light and help you to sit down wherever you are. Install a shower seat if standing for long periods of time is a problem. If getting in or out of the bath is a problem, get a bath seat to sit on. Put anti-slip mats in the bathroom and bathing areas. Though most equipment is standard rather than being custom-made to suit an individual’s needs, in India you can sometimes customise the seats according to your requirement. Occupational therapists can be a useful source of information and can provide practical advice on ways to adapt your home to make it easier to manage.

In case you use a wheelchair, make sure it is suitable for your current needs. Don’t put up with one that you were given years ago – your needs may well have changed and it is likely that new, easier to manage models may now be available. MSSI generally provides free or subsidised wheelchairs to MSPs on request.

Having MS does not mean that you cannot pursue your studies, although you may need to adjust your plans to your condition.

Find a range of universities/colleges/schools to assess their attitude towards and facilities for students with disabilities – most are extremely positive.

If you are already studying, explain your situation to your tutors as soon as possible, particularly your personal tutor. In case of difficulty in writing or remembering, the school or college, on prior notice and application, provides you with extra time, facility or special writers during your exam.

This will help if you need to arrange coursework extensions or have to take time off for appointments or due to ill health. The Open University can be a good choice for people with disabilities and has a comprehensive website with a separate section for people with disabilities

Whatever type of study you undertake, pace yourself and work around your MS. Try to study during your ‘best’ time of the day. If lectures/seminars take place at a time of day when you tend to feel particularly tired, see if someone can record them for you.Loans for degree study are available for Disabled Students. These can be used for study-related costs such as special keyboards, cassette recorders, printers and additional travel costs.

When MS affects you, make sure you make the most of your abilities.

Do Yoga, Meditation and some regular exercise if you are able to. Swimming is a good option, spending time in water can be beneficial and relaxing. Sit in the garden/balcony each day - fresh air does wonders for depression Try not to sit still for long periods of time. If possible, stand up and take a walk ever so often, to prevent stiffness in your legs.

Exercising with a friend can be fun and can help to keep you motivated. If you are able to use a gym, consider investing in a few sessions with a personal trainer who can focus on your condition and devise exercises that suit your abilities.

If you are less mobile, keep your mind active; Concentrate on anything that interests you, whether it is painting, sketching, crosswords, books, knitting, crocheting or chatting on the internet.

Get together with your friends as often as you can and chat about anything other than MS to keep your horizons open. If you look at holiday option there are many holiday choices for people with disabilities.

Try not to give up working just because you have MS. Gather together as much information as possible to educate your employer and reassure them that you can continue to be an asset to the company. Explore the possibility of working from home or cutting down your hours to part-time work. If you have had to stop working and miss it, try something else such as voluntary work.

Make sure that those around you, including family and friends, have a good understanding of what MS is and what it means. This will help them to provide appropriate support when you need it. There is no point hiding anything, people help only if they are aware.

Be prepared to do your own research and try and keep up to date with the latest findings about MS. It is encouraging to see that progress is being made.

Contact MS organisations – find out, in additional to your own knowledge, what they can offer. Other people with MS are often the best source of information and support. Join the programmes of MS Society near you and meet others who are also in similar condition and understand you, share with them, they know a lot. If you have access to the Internet, join a chat room or forum.

It is alright if everyone does not want to know everything about MS – seek information when you feel ready to deal with it You can have control over situation only if you have proper knowledge. Learning about MS can help you to understand why you experience particular symptoms and allow you to make more informed decisions about treatment

Get a Velcro put in your purse or buy a wallet with Velcro. Keep everything in drawers with channels so that they open smoothly. If you tend to be forgetful, pin a list to your coat or bag to remind you of what you need when you go out or what work you need to do during the day.

Wear rubber gloves if you have trouble opening jars and bottles. Wind thick rubber bands round pens, pencils and door handles to make them easier to grip.Sit on a stool while you do chores in the kitchen and attach a plastic bag for food rubbish to avoid repeated trips to the dustbin.

Buy small cartons of fruit juice with straws attached. They are easy to carry from the fridge if you use crutches. Keep a bell in the kitchen and your living space in case you need to call out for someone.

A good “Quality of Life” and good understanding with family members makes a huge difference to people who live with MS

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A Report by a Multiple Sclerosis Person who attended International MS Conference held on 22nd October '08 at Habitat Centre-Delhi

I felt unsure of myself, unsure of what to expect and yet somewhat privileged to be asked to attend the MS workshop on the 22nd of October this year.

My fears were put to rest by the warm welcome and being told all I had to do was listen. I sat quietly listening to the doctors’ dissertations and in the process learnt that BBB stands for blood brain barrier, that CIS stands for Clinically Isolated Syndrome and CDMS stands for Clinically Definite MS, I learnt of axonal damage…I didn’t realise that anything got past the BBB or the extent to which damage can occur if untreated... well it seems Interferon$ sees to it that none of that happens! Next, a doctor from England told us what could happen to a person with extensive lesions in the frontal lobe. Following which the doctors presented some case studies…I was at a loss at first because what looked to me like a poor attempt at tie and dye was in fact the image of a brain biopsy. Through this segment I sat very still and observed so that no one would guess at my ignorance. But I couldn’t help feeling that the doctors around me were fascinated and reminded me of children trying to put together the pieces of a jigsaw puzzle or breaking apart a new toy curious to learn how it works…they really wanted to get to the bottom of things and that was heartening.

But what I really learnt (and still carry with me) was that in India MS mainly affects the spinal chord and optic nerve; that one must get a proper diagnosis for things that trouble us and not just assume that it is a complication related to MS…it could be very different and very treatable; that testing for vitamin B12 and D3 deficiency is a must; that yoga has been voted as the most effective of treatments by patients in a study conducted in the US, patients present at the workshop too vouched for the effectiveness of physiotherapy and yoga; that there are dietary recommendations along with omega3 Dr Swank’s diet was mentioned, he outlines a diet low in saturated fat and among other things the use of cod liver oil (1 tsp. or equivalent capsules) and a multi-vitamin and mineral supplement are recommended daily; it was heartening for me to learn that most people with MS had trouble standing suddenly I didn’t feel alone in this; I learnt that MRI’s are of different types and to know different things different sequences are to be used but an MRI report has to go hand in hand with/ be supported by the doctors examination.

Further, Dr. A Noronha explained very nicely how heat affects us by likening it to his recent visit to Mumbai, Dr. BO Khatri showed us film clips of patients he had successfully treated in Boston using Plasmapheresis. The clips were indeed very heartening we also learnt from the doctor from GB Pant hospital that the equipment and treatment could be had free of charge at his hospital. But what we didn’t really learn was what kind of patient it was best suited to. The panellists spoke very freely of cases that they had personally examined but weren’t comfortable saying anything to us without first examining us.
What was most surprising to all of us was that ‘we have MS specialists in India’! At the time I just got one name that of one of the panellists, Dr. Singhal, but I’m sure should anyone be interested MSSI will be able to provide you with a list.
I could also sense the pain and frustration of the caregivers and made myself a solemn promise to go easy on those who care for me (except my doctor of course!). It was particularly sad to see a wheelchair bound patient not because he had lost the ability to walk but because he had lost the ability to fight the disease. We learnt to be wary of quacks…since MS has no cure people will promise us the moon but to what cost. We must use our common sense and not go in for heat treatment for example…it emerged that homoeopathy was the safest bet we mustn’t stop our conventional treatment and use alternate therapy as a supplement.

As I write this, I realise I’ve let my health slip and work has once again become my number one priority…my place of work will find others to do the job but I won’t  find another body!...gotta make this one last in a workable state for as long as I can!!

 Written by-Ragnee Bath-Delhi