Living with an increased genetic risk: Preparing for the future

For some people, knowing they have an increased chance of developing MND may prompt them to think about putting things in place to prepare for their future and ‘get their house in order’. Not everyone wanted to think ahead in this way, and preferred to deal with things as they arose, but others found ‘making a plan’ reassuring. This section covers:

  • Lifestyle changes and staying healthy
  • Insurance and financial planning
  • Housing and adaptations
  • Putting things in place for existing children
  • Care and end of life planning

Lifestyle changes and staying healthy

Some people we spoke to talked about trying to look after their health and making lifestyle changes, which they hoped might delay the potential onset of symptoms. This sometimes meant changing their diet (including avoiding certain things, like monosodium glutamate (MSG) or alcohol), and for others, doing exercise, taking vitamins and supplements and avoiding stress.

Anthony hopes that taking vitamins, eating a varied diet and drinking less will delay the onset of MND. Looking after his health is also about creating a “positive mindset”.

Harriet has also prioritised diet and fitness since finding out she carries the C9orf72 gene variant. She said, “you feel more capable to deal with things when you’re fit and well”. Adam has focused on his health since finding out about inherited MND in his family. He said, “I definitely have cleaned up my diet, I definitely don’t drink as much, I definitely take care of my body a lot more… I just I try to optimise it even more because you feel like you need to get that edge on everything”.

Whilst people often appreciated that there wasn’t clear evidence on whether certain lifestyle changes could reduce their chance of developing symptoms, some took the attitude of “it can’t hurt, can it?”. Lizbeth said, “I do look after myself a lot better. I take a bunch of vitamins every day and have done for ten years. Do I think that they’ll stop MND? Probably not, but in my mind it helps”.

Louisa asked her mum’s neurologist about lifestyle factors that could impact disease onset, “I did ask him ‘So what can I do…? Like if I go and drink two bottles of prosecco this weekend, is it going to… make me worse off?’ And he said, ‘No… just live your life how you’re going to live your life… if that includes two bottles of prosecco at the weekend then it does’”.

Sometimes people found it difficult to know whether to act on advice they had heard about, especially where it was quite “extreme” or went against things they considered essential for their physical and mental health. This included some reported links between high levels of physical fitness or exercise and MND, even though these remain far from proven. Georgia said, “that [exercise] is my stress-reliever, that is my outlet, that’s what I enjoy, and that is more important to me at the time than this like unknown maybe risk”. On the other hand, Lizbeth explained to friends that she was not keen to take part in a mountain running challenge now she knew she had an increased chance of developing MND.

Louisa has looked into lifestyle factors that could affect the onset of MND, but until there is “high quality evidence” she doesn’t feel it is justified to make any extreme changes.

Liz Z said, “when I hit 50 and I started to put weight on, one of the things that crossed my mind was, ‘Well, I need to put a bit more weight on anyway, because if I do get MND and I can’t eat, I’m going to lose weight’”.

Insurance and financial planning

Putting in place life insurance and other financial planning, like health insurance or writing a will, was a common topic in our interviews. Although some individuals do this as a matter of course, others decided to do it after finding out about inherited MND in their family or after their own pre-symptomatic genetic test result. One person organised life insurance for her children before her partner was given an official diagnosis of MND.

However, doing these things was not always easy, both from an emotional and practical point of view, particularly for younger people who never thought they’d need to consider financial planning so soon. Calum said having to think about it made him “feel like a 20 year old that’s been robbed of my years”, and that he felt too young to make a bucket list.

Calum feels it is important to put things in place, like life insurance and critical care cover, but isn’t sure when to do this. He says, “Something’s holding me back.”

Although she sometimes finds herself “panicking” about not having life insurance or having written a will, Mary isn’t sure how best to go about these things.

Karen planned to organise a Power of Attorney but hadn’t started the process. Although “I try not to think about any of this”, she feels that she would put such things in place if she noticed symptoms; she wouldn’t wait for a diagnosis.

There was a lot of uncertainty about whether having inherited MND in the family or having a pre-symptomatic genetic test could affect insurance policies. This put some people off taking out or updating existing policies; they felt they needed more information, including on what they had to disclose, the implications of this, and the benefits of having such policies. However, others had been told through genetic counselling that they were not required to share the results of a pre-symptomatic test for inherited MND with insurance companies, though it is important to be honest about family medical history. Information on insurance and genetic conditions can be found on the Genetic Alliance UK website.

For some people, knowing they had an increased chance of developing inherited MND impacted their career choices and plans for retirement (See ‘Attitudes to life‘).

Housing and adaptations

Sometimes ‘getting your house in order’ literally meant thinking about future housing needs and home adaptations.

When doing up the house, Angi put in an accessible bathroom and step-free access. Even if she doesn’t develop MND, she sees this as a sensible decision as she and her husband get older.

Lillian has also considered the practicalities of housing. She said, “it’s only human nature to think, ‘What would I need to do? How would I get into that conservatory over that step? How would I get upstairs?’”. She has decided to stay in her current house because it is well located for services and suitable for adapting if she does develop symptoms. Jade has moved house to be closer to her mother and mother-law, so her husband and children would have their support if she became ill.

Although she didn’t discuss this with others, Maggie couldn’t stop thinking about practical things like housing and adaptations after finding out about inherited MND in the family. She said, “When we were getting rid of my eldest brother’s bits and pieces, we kept saying, ‘Well look, don’t get rid of his wheelchair, don’t get rid of his rollators, somebody’s going to need them’. And in my head, it was me, I was going to need them… I used to be looking around the house thinking, ‘Well no way are we going to be able to get hoists into this house, or ramps… we’d have to move’”. Since finding out she doesn’t carry the C9orf72 gene variant, “all those thoughts have gone, I don’t have to worry about that anymore”.

Having seen his father struggle with unsuitable accommodation over his illness, Calum sees it as an advantage to know that he carries the C9orf72 gene variant, “by knowing now I can plan for my future to be disabled friendly”.

Putting things in place for existing children

Some people mentioned putting things in place for their children and grandchildren in case they were to become ill. Louisa, who doesn’t know if she carries the C9orf72 genetic variant, has started to record memories for her daughter, such as writing in a journal and taking more photos and videos of them together. Although she sometimes found this upsetting, she wanted her daughter to have these things to look back on.

As she has not yet talked to her children about inherited MND in the family, Helen has prepared information for a family member to pass on in case of an accident.

Helen has prepared a pack of information about inherited MND for her sister to give to the children if something were to happen to her and her husband.

Helen has also thought about what would happen if her husband were to become ill for another reason. In that scenario, she would want to find out if he carried the C9orf72 gene variant to have that information for their children. They have planned to look into how to put this in place.

Care and end of life planning

Thinking about the kind of care they would want if they did develop MND was another common topic, both for people who carried a genetic variant associated with inherited MND, and those who didn’t know if they did or not. A few people questioned whether care had improved since a family member had been affected, though others were reassured to know about advances made in care and support in MND over the years.

Having taken on care roles themselves or seen relatives affected by MND, people sometimes felt worried about the impact on partners and children if they were to become ill. A few people felt strongly that they wouldn’t want their children to care for them, and others planned to manage their own care for as long as possible or have professional carers.

Jade and William felt worried about their children seeing them if they became unwell, though William said, “I don’t know if there’s much you can do about that”. Jade discussed the possibility of developing frontotemporal dementia (FTD) with her husband, “I said to my husband, ‘Just stick me in a nice little home and only visit me if I’m pleased to see you. If I’m horrible, then don’t even bother… Don’t put the kids through it’”.

Thinking about the possibility of taking on a care role could be difficult for family members too. Helen said, “I have this fear that it would be just awful… I would get really frustrated… I don’t think I would be the best nurse…But I would never not do it”. She pointed out that even if her husband did not develop MND, “we’re going to be carers for each other at some point in time… so we’ll just have to deal with it as and when it happens”. Another individual found it helpful to “play out the hypotheticals” and plan how she would support her family member if they did become ill.

Liz Z doesn’t know if she has inherited a genetic variant associated with inherited MND, but her approach to the future is “plan for the worst, hope for the best”. She has thought about her wishes for end of life care, which she has recorded in a legal document called an Advance Decision. This is also known as an Advance Decision to Refuse Treatment and allows people to record any treatments they don’t want to have in the future, in case they can no longer make or communicate such decisions for themselves. In Scotland, this is often called an Advance Directive. This is different from an Advance Statement, which is not legally binding. An Advance Statement enables people to write down their wishes, feelings, beliefs and values in case they need care or medical treatment in the future. These documents are also separate from an Advance Care Plan, which is normally made together with a person’s healthcare team when they are nearing the end of life. People might also consider putting in place a ReSPECT plan and Lasting Power of Attorney. More information on these options is available on the Compassion in Dying and NHS websites.

Liz Z emphasises quality of life at the end of life. Although she has put in place an Advance Decision to Refuse Treatment, this document is “not set in stone”.

Assisted dying is not currently legal in the UK, but several people we talked to wanted to be able to choose their time of death and supported a change in UK law to allow assisted dying. This included Karen and her daughter Georgia Y, who had discussed her wishes.

Karen believes that people should have the right to choose at what point to end their lives. If she develops MND she would consider assisted dying; she would not want to live to the end stages of the disease.

Like Karen, other people felt that they would not want to live to the stage their relative had with MND. Mary said, “me and my sister have talked about we don’t want to go through what my dad did… we don’t know what our options are there”.