There is a medicine called Riluzole which helps in slowing down the progression of the disease in some patients. But there is no definitive treatment for cure of MND as yet. Supportive measures are available for symptomatic relief.
Riluzole is available for free in India from Sun pharma.
Riluzole in some patients may cause side effects like dizziness, vertigo, nausea, vomiting, fatigue, drowsiness, stomach pain etc. Monitor your liver and kidney function periodically. Consult your doctor for medical advice about side effects.
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Rehab therapy has been shown to help patients to retain their functional activities for a longer period. Regular exercise program is a must for all patients of MND. It enhances mobility and independent activities. It is, many times, discouraging to see deterioration despite exercise, but remind yourself that exercise helps to slow down the rate of downfall. We have to maintain as much strength as possible so that we can avail the cure found in future.
While performing exercises maintain safety, don’t get over-exhausted, do it with frequent rest-pauses, maintain hydration and give commands to your body.
There are different therapies that may be required in MND.
- Occupational therapy – special therapy focusing on functions of upper limbs
- Speech and swallow therapy – helps person to learn swallowing techniques and improve speech.
- Psychological counseling – to avoid depression.
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- to maintain strength of weak muscles for as long as possible
- postural correction
- guidance regarding proper support aids eg. calipers, walkers, crutches, wheelchair
- to maintain respiratory capacity
- functional re-education
- to prevent contractures deformities
Physiotherapist incorporates different types of exercises to achieve the above goals.
Types of exercises are
- Passive exercises: To maintain full movement (range of motion) of different joints.
- Person’s muscles are relaxed and therapist puts all the efforts and strength to move that part.
- Active assisted exercises: To maintain strength of weak muscles
- Person makes all efforts to move a part and therapist only supports it.
- Stretching exercises: To stretch tight muscles and prevent muscle contractures, deformities
- Breathing exercises: To maintain clear chest & respiratory capacity
- Balancing exercises: To maintain & improve balance in sitting, standing, walking.
Therapist uses the exercises in the context of a “functional activity”. This refers to performing meaningful activities while simultaneously working on increasing function and mobility. It also deals in training the activities of daily living such as writing, eating, grooming, dressing, and wheelchair skills within the limits of disability enabling the patient to lead an independent life.
Home modification and environmental modification plays a vital role in the successful rehabilitation of the person with ALS. Environment is a place where the individual has to carry out his ADL activities or work includes natural as well as artificial objects. So, the environment includes individuals home, workplace, neighborhood, community.
Home and Environmental Modifications:
It deals with the mechanics of producing words, such as articulation, pitch, fluency, and volume which is affected in MND. Therapist teaches exercises to improve clarity of speech and strengthen the voice.
They also teach techniques to improve swallowing and avoid choking spells.
MND affects not only the person but the whole family. Their world crashes down like a pack of cards in a moment when diagnosis is done. More than anything, it is the hopeless and helpless feeling that drags them into depression. It is very difficult for the family to see their loved one deteriorating. The person affected starts feeling worthless, unwanted, burdensome and unneeded. These negative feelings cause more harm to physical health. So psychological counseling of the person and family plays an important beneficial role.
Psychological counselors are trained in modern psychological methods to help you resolve fears, panics and anxieties, and to help you break through depression. They guide you to open up to new possibilities and take control of your lifestyle. Rediscover yourself and be yourself. Psychological Counseling can help enable you to renew a sense of purpose in your life, find paths to self-discovery and feel happier & peaceful within yourself.
- Take a multivitamin tablet once a day. Make sure it contains calcium with vitamin D.
- Drink a cup of milk with 1 spoon of protein powder daily.
- Do breathing exercises daily even if your respiratory muscles are good. E.g deep breathing, blowing a straw, playing flute or mouth organ, pranayam.
- Sing a song daily. It’s good for speech, lungs and mood. Get some fresh air outside daily.
- Exercise all muscles of body daily without over exertion.
- Appreciate people who help and support you in this tough time. And remember to Smile.
Things to avoid
- Avoid MSG i.e. ajinomoto in food as it damages the nerves. So please don’t eat Chinese food which contains ajinomoto. [ If you have to eat Chinese food then order it without MSG ]
- Avoid ayurvedic medicines which contain heavy metals which are harmful to nerves especially in MND
- Avoid homeopathy meds which contain steroids as they can sometimes increase muscle weakness.
- Avoid fatty and oily food which causes fatty weight gain resulting in decreased mobility.
- Avoid mercury dental fillings, exposure to lead or other heavy metals and toxic fumes or gases.
- Avoid anger, frustration, tantrums, sadness and isolation.
Tips for family and friends
- Always instill positive attitude in the patient and the family. Encourage and give hope of life. Be optimistic and focus on life rather than the disease. Keep the environment cheerful and peaceful.
- Don’t repeatedly discuss about the disease or its course or prognosis of the disease in front of the patient.
- Help the patient in the ways he wants as he knows his body the best. Learn his ways and don’t make him ask for help everytime. Respect his body.
- Treat him as a normal individual. Give love and affection but don’t over sympathize or show pity. Be compassionate. Make him feel he is needed.
- Don’t stare at him while he is walking or eating with help.
- Don’t take to heart if patient takes out the anger or frustration on you. As a family member it can be hard on you but be strong and don’t give up on the patient. Your moral support means a world to them. You too can share your feelings with friends or take professional counseling. Take help to take care of the patient. And remember to take care of yourself too.