Messages to other families affected by inherited MND

People we spoke to had a wide range of experiences around inherited MND; some had been diagnosed with MND, some had an increased chance of developing symptoms in the future, and we also spoke to partners and family caregivers. We asked them what advice and messages they had for other people in a similar situation. This section covers messages on:

  • Family support and communication
  • Living with an increased genetic risk of MND
  • Pre-symptomatic genetic testing and genetic testing before or during pregnancy
  • Living with MND: attitudes to life, care and support
  • Research progress and hopes for the future

Family support and communication

Some people we spoke to emphasised that “it’s good to talk”. They encouraged other families affected by inherited MND to be open, talk about how they are feeling, and be there for each other.

For Adam, it is important to have open, honest and caring communication. MND brings enough challenges, so “you need the simple things to be simple”.

Kirsty has valued being able to share her fears and concerns around inherited MND with her sister. She emphasises having “somebody that you can just be scared with”.

Whilst people might choose to talk to relatives, others found support from people outside of the family, such as friends or colleagues. Liz Z said, “You don’t have to be brave all the time and there’s always someone out there for you to talk to, to listen to what you’re saying. Don’t feel that you’re alone”.

Living with an increased genetic risk of MND

People acknowledged that living with an increased risk of developing inherited MND is a tough thing to go through and wanted others to know that it was ok to be concerned. Kirsty said, “I’m sure everybody will have a moment where they will feel overwhelmed by it… and that’s completely normal and completely okay”.

Robyn’s message to other people who have an increased chance of developing inherited MND is “you can worry about everybody else, but it’s actually all right to worry about yourself as well”.

People shared strategies to manage their worries and attitudes that helped them cope. They encouraged others to:

  • Stay positive and make the most of life. Jade’s message was, “don’t dwell on it, live your life and enjoy every second”.
  • Remember that “it’s not a death sentence”. People highlighted that even if a person has inherited a gene variant associated with inherited MND, they will not necessarily develop symptoms in their lifetime.
  • Get professional help if needed. Lizbeth said, “if somebody is struggling with this knowledge… there are places and there are people that they can talk to, they’ve got to make it happen.… it’s a better experience if you can talk about it”.
  • Take whatever approach is right for them when seeking information. Whilst some people want to know as much as they can, others prefer not to know too much, which is ok too. Robyn emphasised, “if you want to educate yourself educate yourself, if you want to bury your head in the sand bury your head in the sand… it’s different things for different people”.
  • Find trustworthy sources of information. Lizbeth encouraged people to “find some good information from some people who you can trust and try not to go down these rabbit holes of the internet”. Liz Z reminded people that “there’s no stupid question”.

Louisa’s message was, “I would tell someone to try and be positive, distract yourself, look at the things that are important now in life…. I try and just think about how the best way to live my life is. And probably speak to someone if you feel like you need to speak to someone”.

Pre-symptomatic genetic testing and genetic testing before or during pregnancy

People who had an increased chance of developing inherited MND have different views on pre-symptomatic genetic testing. Some may choose to have pre-symptomatic genetic testing, and others may decide not to find out whether they carry the genetic variant of MND in their family. People had advice for others around pre-symptomatic genetic testing:

  • Pre-symptomatic genetic testing should be an individual decision. As Karen said, “it’s a personal choice, it really is, and I wouldn’t judge anybody who took a different view to me”.
  • It is important to think about the right time to make such decisions.
  • Talking to healthcare professionals like genetic counsellors or neurologists can “help guide that decision that’s right for that person”.

Georgia Y encourages others to do what is best for them and trust how they feel, including in decisions around pre-symptomatic genetic testing.

For people who do pursue genetic testing, Kelly feels that it is important to “face up to” any feelings and emotions over the process. She reminded people that “the process goes as fast or as slow as you want it to and the best thing the whole time you can ever do is to talk to your friends or family or your [genetic] counsellors because they’re there beside you”.

Maggie’s advice to people who have had genetic testing is to take all the time they need to process the results before sharing them with others.

Although people highlighted that “it has to be an individual decision”, some people encouraged others to consider genetic testing to guide options when having children.

Harriet also talked about pre-implantation genetic testing (genetic testing with IVF), which may be available to some people where an inherited condition has been identified in the family. She felt it was important to highlight that “there’s no right or wrong answer to that”.

Living with MND: attitudes to life, care and support

People with MND gave advice to others diagnosed with the disease. They encouraged them to:

  • Remember that “There’s plenty of life to be enjoyed while you’re going through the process” (John). Liz X said, “My message would be that, although it might seem like the end of the world when you’re given that diagnosis, that there is light at the end of the tunnel, and it’s not the end. It’s the start of one hell of a long fight, but you’ve just got to live each day and try, that you’re living with it and not dying from it”.
  • “Look at the good things in life”. Dani’s approach to living with MND is to remember there is nothing she can do to change her diagnosis. She says, “I’m not going to ruin the last few years of my life being miserable and bitter”.
  • Don’t be afraid to ask for or accept help. JW said, “Be pushy but try and do it with a sense of humour. Don’t take no for an answer if you know you’re right. Listen to the advice of the people who are trying to help because… if they’re good people, then they are very, very worth listening to”.
  • Respond in the way that feels best.

For David, it is important to “keep challenging” the disease. He encourages others to try and find something in themselves to keep going.

People who had provided care to family members had advice for others in a similar situation.

  • Maggie’s advice to other carers is to “be kind to yourself”, “you will always come away from there thinking, ‘Oh maybe I could have done that differently’. Don’t beat yourself up about it… none of us are perfect, and we can only do the best that we can”.

Sheenagh encourages other carers to “look on it as a privilege and not a chore, because you’re only going to get one shot at it”.

Although it comes with many emotions, Niki feels that caring brings out inner strength. She recommends finding something to smile about each day.

Family members of people with MND had messages for other families where a relative had been diagnosed.

  • Paul emphasised the “tight timeframe” after diagnosis. His advice was to “make the most of the experiences that you can have”.

Lexi encourages people to make the most of the time they have after a family member is diagnosed; it is important to “create as many amazing memories as you can”.

Research progress and hopes for the future

Some people we spoke to felt hopeful that treatments to manage or prevent MND would be developed in the coming years. They felt positive that future generations especially might benefit from research progress. Helen said, “It feels like a lot is happening and things are changing quite quickly and there are good people out there working on it… So things will change”.

Research around MND has progressed in recent years, and there is a lot of work going towards trying to find treatments for people with inherited forms. Lillian’s message is, “it’s coming”.

Harriet also saw a hopeful future for families affected by inherited forms of the disease, “If we have to be in this club, we’re in a club that is privileged that it’s known about and it can be targeted and there is hope, and I think that’s really important”.

Volunteering, raising awareness and fundraising

People talked about getting involved in raising awareness and fundraising for MND-related causes, as well as volunteering. This section covers: Fundraising and raising awareness Volunteering...