Living With Motor Neurone Disease


I had the pleasure of meeting Dr Hemangi Sane and her mother at the MND conference in Dublin. She was diagnosed with MND in 2004 during her medical practice in New York and then went on to start a non-profit organisation called ‘Asha Ek Hope‘ foundation for MND/ALS in Mumbai. She was honoured with International Women’s Day Award in the year 2013 by the Mayor of Mumbai city for treating and empowering patients with ALS/MND and research for a cure.

She has spoken of what it is like living with MND :

“MND is a physical condition which psychologically breakdowns the affected person and the family members. But we have to try to come out of this slump and live as full life as we can, coping with the shortcomings. Here are some helpful tips that I used to come in terms with MND and start living again”.

  1. Positive attitude – It is difficult but definitely possible. Positive attitude attracts positive energy in our lives which helps us to face MND with a strong mind demeaning its ill-effects. Surround yourself with positive people, enthusiastic songs, inspiring movies, books etc. Make your environment pleasant, energetic and peaceful. Focus on the half full glass and not on the half empty portion. Pay attention on how we can keep on doing the activities that are possible for longest period. Forget disappointments and Think about your dreams. Positive thinking brings about favorable changes as the universal forces always responds in the direction of our mind’s signals. The real power lies not in the muscles but in our mind.
  2. Self-belief – ‘Yes I can ‘. Say this to yourself repeatedly even if you don’t feel like it. You will realize that by giving these positive commands to your mind eventually it builds up self-confidence. And you will believe in yourself that you can cope with this problem.
  3. Importance to life – Remember ‘Life is beautiful, no matter what’. Look at innocent smiling face of kids, delicate peaceful newborn, beautiful mother nature – rivers, mountains, green trees, chirping birds, refreshing flowers, vibrant rainbow and open sky. May be in busy life these things were ignored so take this chance to enjoy and appreciate the beauty of life. Give importance to living and not the disease.
  4. Acceptance – It is difficult in the beginning but sooner we accept that we have to cope, we will find ways to work around the situation earlier. Explain the mind that ‘it’s ok and I can tackle it. Everything will be alright’.
  5. Get back to work & To- do list of life – Try to get back into your profession or any work you enjoy. Get involved in a cause close to your heart or social work. Take a helper along and actively participate in tasks you like e.g. cooking, household work, work on computer or telephone, become an advisor or counselor, teaching etc. There are many ways you can contribute and always remember you are needed. Make a to-do list of things which you always dreamt of doing and start working on it to fulfill it. Make your dreams a reality.
  6. Socialize – Have no fear and face the world [people] with confidence and dignity. Join online communities, school or college groups..Get out of home even if it means taking your helper along. Meet friends, relatives, neighbors etc. Go for movies, eat at restaurants, go to mall, visit places you enjoy. Don’t bother about people staring at you; just think they are appreciating your high spirits.
  7. Share feelings – Find some people in your life [family or friends or acquaintance on internet] with whom you can share your feelings and express your emotions. Sharing can be verbal face to face or on phone and can also be written on paper or email. Basically, you should take out your emotions as it acts like a catharsis which calms down your body and mind. Appreciate supportive people around.
  8. Self-entertainment – Enjoy life and remember its your responsibility to entertain yourself. Play games with family, friends and if nobody is available play on computer. Hobbies have to be retained. If the hobby is something that you are unable to do then watch someone else doing it. As it will give you immense pleasure to be connected with your hobby.
  9. Peace of mind – Forgive all and don’t blame others or yourself for the problem. Everyone has problems in life and this disease can happen to anybody at anytime. You have done nothing wrong. The renowned scientist Stephen Hawking is also living with MND. There are many doctors, nurses, engineers, and farmers etc who develop this disease. Try to achieve peaceful mind which will increase your inner strength. Meditation, prayers, religious books, enchanting ‘OM’ and inspirational stories are some of the ways which offer peace of mind.
  10. Keep smiling – ‘Laughter is the best medicine’. Smile and the whole world smiles back at you. Even if you don’t feel like it – smile and you’ll feel good when you get a smile in return. Watch comedy movies, shows, funny videos, cartoons or read funny books. Laughter stimulates positive chemicals in our body which relieves stress. Always keep smiling.


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