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”.

I wondered if you had any advice or messages for other people or families who are in a similar situation, who have been affected by inherited forms of MND?

Just to communicate openly, honestly and caringly. And if you don’t do all of those things, if you do one or the other more than the other, I think you’re going to have more hurdles than you need to have. It’s a challenging time enough, and I think without that communication, it’s going to become a lot more difficult and you really need things to be easy. You need the simple things to be simple because the difficult things, such as the MND and the way it, you know, affects people, they’re always going to be difficult. So if you make the simple things complicated then you’ve got, you know, you’ve got dozens more problems to have to deal with before you even get to the largest one, the scariest one.

So just to simplify by communicating very openly, I think because, you know… talk about feelings, talk about what you fear, what you want to happen. Speak about hope as much as you can because you don’t always, you don’t really feel that a lot. That would be, that would be probably my advice.

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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”.

I feel like there’s no right or wrong way to feel. And to find people or a person, you need to be able to talk to somebody, and if that’s not within your family who are immediately affected, you know… it’s not something that you can just brave through, I think. As practical as you might be, or as you can be, you try to be really positive about things, but I think there will definitely be, I’m sure everybody will have a moment where they will feel overwhelmed by it, by the enormity of it and that’s completely normal and completely okay.
 
I think it’s important that you have somebody that you can just be scared with, if that makes sense, that you can just be really honest about how you’re feeling, because I think, especially when you’re the person, it’s actually happening to your family member and not to you, I think there’s a sense that you feel you need to be strong because it’s not happening to you, it’s happening to them.
 
So, I certainly felt like I always needed to be strong for my mum, around my mum. But I had my boyfriend, I had my sister who I could then say, “I’m not feeling strong at all, I’m actually, I’m terrified” and if I hadn’t had that then those sorts of emotions probably would’ve imploded.
 

 

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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”.

I feel sorry for anyone who has to go through this to be honest and anyone that’s seen anybody or cares for anybody die of MND. I don’t have, I don’t think there’s anything that I could say that could support anybody because it, it might happen, but it might not happen. I, I honestly don’t… I just, I just would like people to see that maybe what they’re feeling, they’re not the only one that feels that way and actually it’s okay to be selfish when thinking about things like this. It’s okay to be selfish and worry about you because, because you can worry about everybody else but it’s actually all right to worry about yourself as well.

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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.

I guess my advice to them is to just do what’s best for you and what they think. And obviously again, it’s a situation where we don’t know whether, you know, it is going to affect us or it isn’t, and everybody deals with things differently and I don’t think people should, you know, get angry or upset with themselves or second-guess their thoughts if they do want to get tested or if they don’t want to get tested. I think that ultimately, we could be faced with something that’s like really, really terrible, and therefore you should just do all that you can that’s going to kind of help you manage that. Whether that’s being like me and just not thinking about it, or whether that’s, it’s going to help you to get as much information as possible, to speak to as many people as possible, then I think it’s just knowing that it’s a really individual thing and just going with what you feel.

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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.

I think you just have to go with your own gut instinct and do what you feel is right. I don’t think there is a right or a wrong thing on this one. But the, the advice that my brother abroad gave me about taking your time passing on the information was a good one, because nobody would be any the wiser if it took you a couple of days or a couple of weeks to get round to processing the result in your own mind so that you’re clear how you feel about it before you then pass it on. I’m really talking about bad news stuff now; good news is, as I say, very simple to pass on.

But some people would want to do it quietly themselves, other people want to share the grief, so… It is a grief, you know, you once you get that bad news, it would be losing a part of yourself forever, you know. That, that hope would have gone. And you can only do how you feel is right for yourself. But that, that advice that I had to say “Just take your time, you don’t have to do it all at once” made sense to me.

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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.

But you know, if you have a, some sort of terminal disease, don’t think it’s going to kill you straightaway, and it’s not suddenly appeared and suddenly you’re dead, it’s progressive and there are things we can do that might slow its progress. And other things we can do like drinking two, work it out, three pints of extremely strong cider don’t help us [laughs]. So you know, make your choices and live with the consequences and don’t just think, “This is a terminal disease, woe is me, I’m going to fall over and die”. Keep challenging it, you know.

I keep challenging myself to go back on my exercise bike and rowing machine and cycle, you know, and I’m resisting getting an electric, an electric bike. My wife’s saying, “Buy an electric bike”, “No, if I can pedal, I’ll pedal as long as I can”. So, it’s just I think… but we all respond differently, but I would just encourage people, don’t fall over and think, “That’s it”, and collapse and spend the rest of your life in bed, try and find something in you to say, “As long as I can, I will keep going”.

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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”.

As far as the caring is concerned, try and look on it as a privilege and not a chore, because you’re only going to get one shot at it. And I definitely think it was a privilege to be able to do that, I was lucky that I was healthy enough to do it, and I was lucky that my relationship was strong enough to get us both through it, and I wouldn’t give it over to full-time carers at all, unless I physically couldn’t do it by myself. Because you just, each bit that you give away to someone else is something that you’re losing, and I know that a lot of people maybe can’t give up work, but there is financial help there, a lot of financial help, you just need to get it. So I would say that if you are in that position and you love the person, then for that little period of time, give up everything else and be with them and look after them. That’s the way I would say.

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

I think the message would be it hurts, it’s horrible, it’s painful, you’re going to be angry, you’re going to be frustrated, you’re going to be lost. But you’re going to have, you’re going to discover your own inner strength, just sort of stick with it and literally every day, find or do something that just makes you smile, you know? Even if it is just silly things really, and try and keep the lines of communication open with your family and your friends, because people are going to be coming at it from such different angles, you’re going to feel torn in lots and lots of different ways. And try not to take on everybody’s angst and emotions because you sure as hell are going to have enough of your own [laughs].

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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”.

I mean at the end of the day this disease is I think probably one of the worst you can potentially have as a diagnosis, and you know, when you receive the news that one of your loved ones has that it’s bad enough to then go on to find out that it’s hereditary is just another blow. But you know I just think try and you know, find out as much as you can and make the decision, obviously you know, your loved one is going to go through a horrendous time, stay strong, I mean goodness, it sounds so, so simple but you know, be there for them and listen, enjoy every minute you have with them, gosh, make the most of you know, as soon as they’re diagnosed make the most of the time they have of being relatively healthy.  It moves very fast typically, average life is one to two years so you know, as soon as you have that diagnosis book yourself an amazing holiday and create as many amazing memories as you can. And yeah, just continue afterwards if, if that person’s passed away get any help you need, whether that be counselling, talk to other people.

And yeah, make the decision whether you want to get tested or not. In my case I didn’t, but that might not be for everyone, everyone’s different. It’s, it’s a tough, it’s a tough you know, thing to, to go through, and I won’t say it’s easy because it’s, it’s certainly not, but we all just hope and pray that there is a cure sooner rather than later.

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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”.

If anybody doesn’t know about the trials that are going on, I think there is a really, there is a big hope for the future. Things are happening in terms of medical trials. It may not be soon enough for my generation, but the future generations have got a real hope, a real, real hope. We’ve got a slim hope, but the future generations have got a massive chance of science being able to stop them developing the symptoms. If you think that when my dad died in 2003 they didn’t even know what C9orf was, and now they’re trying to do gene silencing on it. And I think the only message I would say to people is, it’s coming.

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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...