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Living with MND

“Perseverance is not a long race; it is many short races one after the other.” – Walter Elliot


Who is a Caregiver?

newly-diagnosedThis can be an official or unofficial role. Even if one is a close family member such as the spouse, parent, or children of the diagnosed person- you can be considered the caregiver if you provide support to them. Alternatively, families may choose to hire someone to take on caregiving as well.

This is a role that keeps evolving based on the needs of the diagnosed.

Some key points must be considered such as whether:

1. The caregiver can cope well with the role.

2. They get regular breaks from caring.

3. They develop better knowledge about their role and the needs of the person they’re caring for.

4. When the caregiver is provided support and is valued and listened to.

Sharing happy moments with family

These pointers have been written using the following pdf by Motor Neuron Disease New Zealand. Please do give it a read if you would like more information on the same.

There is an element of planning required for caregiving. Not only will they have to foresee the progression of the disease and the needs that arise with it, but sharing responsibilities is also vital. This reduces the over-reliance on a single person. However, it is important that all the primary caregivers are involved as early as possible as it will be a learning curve for them and they will become better experienced over time. Sharing and dividing responsibilities can also reduce the stress on the carer- especially if they are an older person. Many caregivers deal with “burnout” where they get emotionally exhausted and physically drained. Thus, self-care is important for the carer with adequate breaks. This division of responsibilities can be achieved through friends and family. Having someone help out with household chores once in a while or in cooking meals etc. can help ease the burden on the  caregiver.

Dr. Alexander Thomas | President, AHPI

As President of AHPI and National Board Accredited Institutions (ANBAI), Founder-President (2012-2017) and Patron of the Consortium of Accredited Healthcare Organizations (CAHO), Dr. Thomas has effected far-reaching policy changes within the healthcare landscape, including incorporating healthcare communication among the NABH accreditation standards and in the Indian medical curricula, leading the expert group on medical education for the National Education Policy 2019 headed by Dr. Kasturirangan, and creating a national network of healthcare associations with the IMA, CII, FICCI , NATHEALTH and ASSOCHAM, a think tank on health (with NLSUI), and liaising between government and health stakeholders during the COVID-19 pandemic.

He has developed major initiatives at the State level, especially in Karnataka, and served on committees of the Union Health Ministry, NABH, HSSC, CII, FICCI, UNESCO, PHFI, and NBE.

He is a Visiting Faculty at IIM-B and NLSIU, pioneering several healthcare training initiatives.

His recent publications include books on healthcare communication and healthcare quality, and white papers submitted to the Government of India.

He was awarded the Emeritus Teacher Award by NBE (2014), the National Distinguished Services Award by the IMA (2016), and the Lifetime Achievement Award by CAHO (2018).

AHPI Founders page:

AHPI India

Online biodata:

Dr. Alexander Thomas President, AHPI


Dr. Alexander Thomas – President – Association of Healthcare Providers – AHPI (India)

Zoom Link:

NIMHANS & Dr. Shyama Narang Foundation is inviting you to a scheduled Zoom meeting.

Topic: Second International Conference on ALS/MND – “Breaking Barriers in the Treatment of MND/ALS”
Time: Jun 21st & 22nd 2023 09:15 AM India

Join Zoom Meeting

Meeting ID: 825 0849 4791
Passcode: 626500

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