March 31st, 2021
“To say my world was turned upside-down that day in clinic is an understatement. I was expecting bad news, but the diagnosis came as a terrible shock. Some days, even now, I stop and ask myself has this actually happened,” ~ Person with MND
A diagnosis of motor neurone disease is life changing. For many people, it comes as a devastating blow, both to the person diagnosed and their loved ones. It’s normal to feel very distressed around the time of diagnosis. It brings shock and often profound sadness. For many, it comes at a time in life when they were preparing to enjoy retirement. For others, it arrives when they are in the middle of their working life and raising young families. Grief at the loss of the future you thought was ahead can hit like a tidal wave.
The shock of the initial diagnosis usually settles with time, and thankfully most people adjust so that they can focus on living as well as possible with the condition. MND is a moving target however, and the reality of dealing with change and new challenges can bring ongoing stress and pressure to adapt. In this piece I cover three areas:
- I name some of the challenges that can cause stress for people living with MND.
- I list some supports that are available to help with these challenges.
- I also discuss coping strategies that can be useful at difficult times.
- Sources of Stress
“There are so many things to deal with in MND. Sometimes it’s too much; I just want to bury my head in the sand and pretend it’s not happening,” ~ Person with MND
Stress presents differently for different people. It can show up as anxiety, causing physical symptoms such as increased heart rate, sweating, and upset stomach. It can be difficult to think clearly and solve problems when you’re under stress. Stress can also show up as low mood, with symptoms such as disturbed sleep and withdrawing from loved ones.
There are many different worries that can trigger stress for people with MND. Typical sources of stress include
- Worry about the future
- Financial worries
- Fear about how family will cope as the condition progresses
- Grief at the losses brought by MND
- Anxiety due to shortness of breath
- Fears of choking
- Stress caused by changes in thinking, attention, and behaviour
- Worries about changes to mood and memory
- Fears around death and dying
- Sources of Support
“You matter because you’re you, and you matter to the end of your life. We will do all we can not only to help you to die peacefully, but also to live until you die,” founder of hospice movement Dame Cicely Saunders
There are, of course, no easy solutions to these worries. They are valid and understandable concerns for anyone dealing with a condition as difficult as MND. There are, however, many supports available that can help you through. I tend to think of getting support as putting legs under a table; the more you access, the steadier you tend to feel. Supports such as the following can help:
- Talking to your MND team, your neurologist or nurse specialist; they may not be able to solve every problem but talking openly with your team will help clarify your concerns. Chances are they will have experience of dealing with the difficulty you describe. There may be options they can suggest that you hadn’t thought about.
- Linking with the IMNDA; the IMNDA will do everything possible to support you with information on financial and legal matters, specialist equipment, care hours and counselling for you and your family. Do pick up the phone and call. If they can’t help, they may be able to link you with someone who can.
- Talking to specialists on the MND team about specific worries
– The speech and language therapist can offer support with fears about choking, offering coping tips and if necessary, suggesting a modified diet.
– The physiotherapist can suggest ways of staying active and can assess your breathing. She can offer information and support, as well as assistive devices if necessary.
– The occupational therapist can talk about supports to help you stay as independent as possible for as long as possible, including specialist equipment and modifications to your home.
- Linking with palliative care; many people worry that a referral to palliative care means the end is near, but palliative care can be an important support from quite early on in MND, to help manage common symptoms such as pain, breathlessness and constipation. The hospice and palliative care team can also talk through any worries you have around end of life.
- Linking with a psychologist or neuropsychologist; psychologists offer assessment and support around changes in mood, thinking and behaviour.
- Coping Strategies: Having your feeling without your feeling having you
|Name it to tame it||Research has shown that simply naming your experience e.g. “I’m feeling sad because so much has changed”, is often enough shift your brain from panic mode into a more helpful frame of mind. Name your experience, then take three slow breaths, focussing on one breath at a time.|
|Sensory anchors||For some people, the senses are easier than the breath to help connect them to the present moment. List out what you can see, hear, smell, taste right now. Use sensory comforts such as massage, music, a soft scarf around your neck.|
|Stay moving||Exercise is a great stress buster but staying active is a real challenge as your condition progresses. Ask your physiotherapist for advice. Try creative approaches to movement such as using music to help motivate you.|
|Self-soothing||Self-compassion is easy to talk about but hard to do, especially when you’re stressed. Try placing a hand over your heart and deliberately offering yourself words of kindness; “I’m here for you. You’re doing your best in this. This is a difficult time.”|
|Beat the negativity bias||Research has shown that we’re hardwired to notice the negative, such as mistakes we feel we’ve made. This bias helped our ancestors to survive, but nowadays it adds to our stress. Beat this bias by paying attention to what you’ve done well, listing the things you’re grateful for, actively remembering the good times in your life.|
|Catch the grasshoppers||Another form of biased thinking is jumping to conclusions. When we’re stressed, we can leap like a grasshopper from one thought to another e.g. “My voice is gone” therefore “I’m not great company anymore” therefore “there’s no point meeting people”. You can see how this thinking can lead to all sorts of unhelpful conclusions.|
|Think Ahead||Discuss your concerns about the future with your family and care team; sort out the practical challenges (such as additional care options) and legal issues. Document your care preferences. These are very difficult conversations to have but having them can really take a weight off your mind. Documents such as Think Ahead can support you to do this (see links below).|
|Make lasting memories||Reflect on what matters to you. Seek out experiences with family and friends that will provide lasting memories. Record them in some way. Put them in a “hope box” or a folder on your phone that you can pull out at difficult times.|
I tend to think of stress, anxiety and depression as different places along the same road. Any of the coping strategies I’ve described can help with all three. It’s important to talk to your doctor, however, if you feel you’re suffering from depression or need help with anxiety. This is especially important if you’re feeling overwhelmed a lot of the time or are having thoughts that life is not worth living. Consider linking with a counsellor or psychologist. Working with difficult thoughts and feelings is often too much to manage on your own. Your doctor or a trusted health professional can assist you to get the help you need. The IMNDA can offer financial support with the cost. Don’t suffer in silence.
Finally, I want to wish you well in your path, may you stay connected to what sustains you. There are links below that offer ideas and support if you wish to look further.
Dr. Ailín O’Dea is a Senior Clinical Psychologist at Beaumont Hospital. She is a member of Professor Orla Hardiman’s Team. Ailín works on a study looking at online groups for families and caregivers of people with MND. She is interested in what helps people with MND and their families live as well as possible with the condition. She is contactable at firstname.lastname@example.org
Links to Support Coping, Mental Health and Memory
- One practice that can be useful to help connect with inner stillness and strength, even if you can’t move about, is the mountain meditation. Here’s a link to one I like, but there are lots of different ones available online https://soundcloud.com/ucsdmindfulness/15-min-mountain-meditation-by-lois-howland?in=ucsdmindfulness/sets/short-meditation-sessions
- The excellent stress control programme offers great tips and ideas; the booklets are always free and the sessions with Jim White are regularly offered by the HSE ; keep an eye on the website for upcoming live stream dates and free downloads https://stresscontrol.ie/
- Beaumont Mindfulness and Relaxation Centre; lots of free exercises and sound advice beaumont.ie/marc
- San Diego Mindfulness Center; lots of great exercises based on the Mindfulness Based Stress Reduction Programme. I particularly like Marta Patterson’s guidance. https://medschool.ucsd.edu/som/fmph/research/mindfulness/programs/mindfulness-programs/MBSR-programs/Pages/audio.aspx
- The Alzheimer’s society have a very useful booklet on technology that can help for anyone with memory difficulties https://alzheimer.ie/wp-content/uploads/2018/11/ASI-Assistive-Technologies-Brochure-Nov-2019-website.pdf
- You might prefer to use a folder on your phone, but there’s an app Virtual Hope Box https://play.google.com/store/apps/details?id=com.t2.vhb&hl=en_IE&gl=US that includes distraction and support for difficult times and you can add your own media under Distract Me- Photo Puzzle.
- Pieta house provide 24 hour support for people in acute distress or at risk of self-harm https://www.pieta.ie/
End of Life Care and Planning Information
- Information on palliative and hospice care https://hospicefoundation.ie/i-need-help/i-am-seriously-ill/about-palliative-care/
- The Think Ahead form, for anyone who wishes to record their end of life care preferences https://hospicefoundation.ie/i-need-help/i-want-to-plan-ahead/think-ahead/
- Information on advance care planning in Ireland https://www.citizensinformation.ie/en/health/legal_matters_and_health/advance_care_directives.html#
- Information on legal arrangements for incapacity in Ireland https://www.citizensinformation.ie/en/health/legal_matters_and_health/legal_arrangements_for_incapacity.html
End of life guide for people with MND from UK: lots of very useful information in here but bear in mind the legal issues apply to the UK, ask locally for Irish information www.mndassociation.org/support-and-information/information-resources/information-for-people-with-or-affected-by-mnd/end-of-life-a-guide-for-people-with-motor-neurone-disease/