Coping during COVID 19: Support for People Living with MND and their Families - IMNDA

Coping during COVID 19: Support for People Living with MND and their Families

June 18th, 2020

Coping during COVID 19

Support for People Living with MND and their Families

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We are living through extraordinary times.  The last few months have brought huge change and pressure to adapt in everyone’s lives.  For people living with MND and their families, these changes come on top of dealing with the moving target that is the illness.  This piece talks about some of the added stress that COVID 19 has brought.  There are no quick fixes to these challenges, but I explore some simple things that have been shown to support wellbeing and coping in times of difficulty.  I also list some resources that you may want to access, now or in the future.

The first and perhaps most obvious thing to state is that it’s okay to feel stressed right now.  You and your family are already coping with the changes that MND has brought into your lives.  It’s normal to feel overwhelmed and distressed at times.  On top of this pressure, the COVID 19 pandemic has added pressures such as:

  • Fear of contracting the virus
  • Worry about decline in health and wellbeing of the person with MND during lockdown
  • Loss of key supports such as home care, because of fear of contracting the virus
  • Loneliness; missing physical contact with family

For many people, these pressures feel manageable.  Chances are, however, that the pandemic has added stress in some way for you or your family.  There is no magic wand that can transform stress.  Individuals and families living with MND know this better than most.

There are some simple things, however, that can support people through difficult times.  These are things we often forget to do when we’re stressed.  I like to think about these supports as putting legs under a table; the more you add the better supported you’re likely to feel.

The 5 C’s of Self-Care During Covid 19
1.     COMPASSION It’s okay not to feel okay, especially with all the uncertainty at the moment. Be gentle with yourself. You’re always doing your best, even if it doesn’t always feel good enough.
2.     CALM Stop and breathe. Count to 5 on the in-breath, 5 on the outbreath; it slows the stress cycle and helps you think clearly. Try a mindfulness app. Exercise; even a ten-minute walk or a seated routine helps support body and mind.
3.     CONNECT Stay in touch with loved ones in whatever way you can.  Connect with what matters to you.  For caregivers, remember it’s ok to look for help, now more than ever.
4.     CONTROL THE CONTROLLABLE Set a small, manageable goal each day. Something simple that helps to sustain your spirit. Praise yourself for achieving your goal.
5.     CONFIDENCE/ HOPE Remember, this too will pass. Try keeping a gratitude journal; one small thing you enjoyed each day. With practice, it can actually help nurture a happier mindset.

(Adapted from Stress First Aid model developed by Patricia J. Watson and colleagues.)

While this has been a time of huge loss and challenge, there have been some opportunities, some silver lining.  This was captured in Róisín Duffy’s comments on the IMNDA website;

“Many are scared, very scared and rightly so, but many have told us that they are using this time to appreciate their loves ones, appreciate nature and be grateful for everything that they still have in their lives.”     (Róisín Duffy, CEO of IMNDA)

I sometimes think of Jon Kabat’s Zinn’s comment; “You only have moments to live.”  It’s a reminder to us to try to live in the present moment as much as we can; savouring the taste of our food, the sound of birdsong, or the company of a loved one.  The experience of living through a pandemic, as well as dealing with MND, makes the goal of living in the moment ever more challenging, but perhaps ever more urgent.

 Online Group Support


Dr. Ailín O’Dea is a Clinical Psychologist working in Beaumont Hospital as part of Prof. Orla Hardiman’s team.  Along with her colleague Caroline Wheeler, is involved in a study that looks at the impact of online groups for families and caregivers of people with MND.  The groups are structured and run over six to eight weeks.  They offer a chance to meet others in a similar position and learn new skills.

These online groups first started in early July with participants from all over the country.  There have Caroline Wheelerbeen wonderful moments of sharing and support between group participants, despite the very challenging nature of their situation for many caregivers. The challenge has been exacerbated by the pandemic.

They are currently recruiting for the next round of groups, that will be starting in October 2020*. If you, or anyone you know, may be interested in attending these online groups, please check out the link below or contact Caroline on email or phone number 089 480 4173 (Mon – Fri, 9am-5pm).


Other Resources and Supports 

  • Great mental health advice and links to lots of supports.
  • Smiling Mind is a fully free meditation app.
  • Meditation apps such as Calm and Headspace can be really useful. They charge for a full service but offer some free material (the Breathe Bubble on Calm is a great support for mindful breathing! Go to “more”, “Breathing Exercises” and set your time).
  • IMNDA Link up by phone or on the website with any queries around help or support you or your family may be able to access including counselling, MND Specialist Nursing support etc.

Resources for Caregivers


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