As MND awareness month is approaching we have created a short video to raise awareness.

I was honoured to be invited by Brent Sikh Centre Gurdwara (Temple) to address the congregation and raise awareness about Motor Neurone Disease within the Asian community. I felt this was a great opportunity to make a real difference for those people living with and affected by MND. I had discovered through my research that very few Asian people used the services provided by the Motor Neurone Disease Association. Through further discussions my belief was validated that there is a very real stigma attached to those from the community who have been diagnosed with any neurological disorder. They talked about how they hide their loved ones from the world as they fear judgment by others in their community and this stigma leads to additional stress thus resulting in depression. By the end of the session people were still shy to take leaflets in front of others and only did so by taking me aside individually to tell me their story.

This has now led me to give further talks in other temples.

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.

In its early stage MND (also known as ALS and Lou Gerigh’s disease) can show similar symptoms as Parkinson’s disease, which is also a neurological disease.

Commonalities between MND and Parkinson’s disease allow researchers to develop more effective treatments for both diseases.

Difference between Parkinson’s and MND

Parkinson’s disease typically begins with problem writing followed by tremors, muscle stiffness, difficulty standing or walking, changes in speech, slow movements, impaired posture and balance, and loss of automatic movements.

Signs and symptoms of MND include slurred speech, hoarseness, difficulty swallowing, emotional liability (involuntary laughing or crying), loss of tongue muscle contour, excess saliva, difficulty breathing, limp muscles or flaccid weakness, muscle wasting, and twitching.

In the early stages of the disease, MND patients may notice that performing regular everyday tasks has become more challenging. For example, they may experience difficulty climbing steps or getting up from a chair. Symptoms may first begin on one side of the body, but as the condition progresses, they spread to both sides.

MND and Parkinson’s disease share symptoms associated with the negative impact of both conditions on movement and muscle function.

Parkinson’s UK have recently partnered with artificial intelligence experts, BenevolentAI, in the hope to find a cure by using technology to help researchers find new and better treatment.

More information on – Could artificial intelligence find a cure for Parkinson’s? 

MND is the abbreviation for Motor Neurone Disease, also known as ALS (Amyotrophic Lateral Sclerosis) and Lou Gehrig’s Disease.

Motor Neurone Disease Association have produced a short animated video to help explain what MND is….

Please click here.

Here are some facts about motor neurone disease which clearly shows that over 80% of people suffering from this disease will have communication difficulties, including for some, a complete loss of voice.