Chronic stress/anxiety as a trigger or risk factor?

[Why]

Hello, I’d appreciate your personal views on whether you think chronic psychological stress and anxiety (incl panic attacks, phobias etc) over years and years could trigger MND or be a risk factor for some MND sufferers knowing that MND likely has many causes?

- I searched all over this forum and the topic was not raised other than one member Halys making such a reference.

- there is very little research papers on it specifically:

… There is a 2009 Japan study that linked stress and type A personality;

… a 2018 paper from UK I believe (survey) that showed no link;

… a 2020 study that links chronic stress disorders with higher incidence of Neurodegeneratiive diseases but where ALS was not statistically significant but authors believe that may be due to the young cohort

- I’ve read or emailed a few MND experts and opinions are equally divided between yes; no; more research needed. I’m told it’s hard to study and has not received much attention.

- if you Google Dr. Gabor Mate and ALS you will find an excerpt where after being a palliative care doctor for 7 years saw a distinct link albeit anecdotal.

i know one cannot change past. It guts me truly to think.

But from your personal experiences or talking to other pwMND, do you believe extreme long term stress/anxiety could be a trigger or risk factor?

thank you

Jackie

ps. Not sure if this is the right forum.

[Ellie]

Do you have an MND diagnosis Jackie?

[Why]

Hi Ellie, sorry I should have mentioned. My partner does. 55 years old. Last year. Limb onset. Much stress due to work and other factors. It’s something we talk about maybe too much which may not be helpful but for some reason we needed to know even if only anecdotal for some strange closure (or not) of sorts.

[Ellie]

A warm welcome to the Jackie.

Honestly, you might get anecdotal agreement or disagreement but you know from your research, that you won't get a definitive answer.

Developing ALS is a multistep process comprising of genetic and environmental effects so, even if stress was identified as a causative factor, (which it isn't) it alone would not cause the onset of ALS - the accepted theory is that there are 6 steps/factors, the last one being the factor which pulls the trigger on developing ALS.

I don't know if that is enough for you and your partner to put that particular aspect of the 'Why' to bed, but I hope you can both understand that your partner did not do this to themselves...

What I will say that post-diagnosis, chronic stress and anxiety can have a negative impact on the overall outcome, symptoms and general quality of life of the person living with ALS and, by default, on their loved ones.

Hope you're both doing as well as possible.

Love Ellie.

[Why]

Thank you Ellie very much. We kinda knew what you write is the inevitable truth.

That we would probably see yes and no’s on forum and no definitive medical answers.

Many doctors say it hasn’t been studied much and hard to study. Yet we wonder then why it’s more studied in MS and Alzheimer’s. Funding we suspect.

We have also read as you very knowledgeably stated Dr. Al-Chalabi’s 6 step process.

I guess what is gutting that we can’t shake is “if” stress is one of them (and several clinicians anecdotally believe it is) could we have averted MND, averted one of the 6 steps over which at least we had some control (stress).

That is the part we are deeply struggling with.

Thank you for taking the time to respond.

Jackie

[Ellie]

I guess what is gutting that we can’t shake is “if” stress is one of them (and several clinicians anecdotally believe it is) could we have averted MND, averted one of the 6 steps over which at least we had some control (stress).

Being Devil's advocate: why put all the focus just on stress?

Would your partner get genetic testing?
Ever smoked?
Worked as a carpenter, with formaldehyde, job with repetitive movements?
Ever had a head injury?
Military service?

I have my diagnosis: the 'Why' is irrelevant, it's the 'What' can I do now which is important. Energy in ALS is in short supply, I can't waste it looking backwards... That's how I deal with it, look to the future.

But, everybody copes with it in their own way, so whatever works for your partner. xx

[Olivia H]

It is a very soul searching time, but as Ellie says, the myriad of possible things that may or may not have happened are rarely one or two obvious steps..stress and anxiety is felt by huge numbers of the population, most of whom don't develop mnd. I could say I worked in a stressful job when diagnosed, which I did, but it was very stressful for most of my colleagues too, and yet none of them, to date, have mnd. I think it is natural, and logical, to seek some sense and cause/effect explanation, but for most with mnd, as with most cancers, there are a random set of circumstances.
Scientifically, gut health and the harmful effects of inflammation on the body may be areas to look at more, as they are things we can perhaps take small measures in addressing.
Being in constant fight or flight stress mode is not good for anyone. That will not cause mnd, but nor will it help you managing it more effectively. Dagmar Munn in the US has lived well with ALS for many years and writes a very helpful blog, in which mindfullness is a tool she uses to keep well.
My own mnd consultant told me, at my first appointment, that in her long experience, those who 'let go' of the why and managed to focus on being as positive as they could (not easy of course) consistently did much better over the years. That doesn't mean you shouldn't do your own research, try things that help you such as supplements etc, take control of your future, but don't dwell too much on what happened before.
I wish you both well in dealing with a tough time x

[Why]

Thank you again Ellie. You’re thoughtful in suggesting devils advocate.

We have probably researched too much.

We looked at all you mentioned including genetic testing and all was no apart from second hand smoke from 0 to 21 years old (both parents) and policing for 5 years. No pesticide exposure, maybe chemicals at tiling plant for two summer jobs in teens, very low BMI all his life and intense bodybuilding from 16-25 years old.

And maybe writing on the wall started appearing in 2016 but who knows if these are part of 6 steps (cause) or very early signs that from literature seem to be “associated”

- alopecia in 2016 of arms legs eyebrows and some male pattern balding

- losing 15-20 pounds in 2017 from a constant 155 lbs most of life to 140 in 2017 despite eating well and a lot. Hypermetobolic.

- really low bmi 2017-2019

- high cholesterol as of 2017 despite good diet and walking daily


- afflicted with ulcerative colitis in 2018 which is also “associated”

- bad gut microbiome due to yearly sinus infections where yearly antibiotics needed for 10+ years.

- sleep apnea untreated which apparently is seen in military Vets who go on to develop ALS/MND

- late Mom with MS which one study showed an association and late aunt with schizophrenia where studies show 14% genetic association.

We will never know. Did stress cause all of the above that triggered MND or were those early signs of MND?

We do understand your caring advice and also appreciate how you say we all deal differently.

With a young child at home and as one of the most loving and present Dads I guess he feels that if stress was not such factor then it wouldn’t be easier per se but the lingering question and guilt wouldn’t be over his head and heart.

Stress is the one thing that could have been better managed. The other factors are more chance and circumstance with as much emotional pain attached to them but less guilt.

If that makes sense. He can’t let go of the guilt of stress because of our young child and humbly one of the most loving, present, devoted, nurturing, self sacrificing and playful Dads a child could dream of.

it’s heart breaking. And we know we are not the only ones. We understand that. But you can feel his inconsolable pain. Although very successful at work and very sociable with a large circle of friends who are like family, his only true single dream was to raise our child for years to come.

I didn’t mention but it’s now also bulbar dysphagia and breathing so we understand the odds.

as it was for all if you we imagine. It’s surreal. 2 out of 100,000. His beloved Mom stricken with MS at the exact same age. Her too under lots of stress, makes us wonder and breaks his heart of guilt.

Thank you again Ellie. I am sorry for posting our pain so openly when we realize we are not the only ones.

He says had he raised our child and he was older maybe just maybe it could be different. As they are both relatively young, his heart is shattered and soul broken.

with love Jackie

[Why]

Thank you Olivia. I apologize, I missed your response at first.

Like, Ellie you raise caring thoughtful reflections.

What we will have to overcome is his feeling that, as you aptly explain, your colleagues were stressed but didn’t get MND.

My partner of course knows that is true but says if one is predisposed to MND could stress be one of the 6 steps.

After researching stress, he now believes it can be a factor to contribute to whatever susceptibility one may have given that stress heightens inflammation which wreaks havoc.

That we will have to work on overcoming that sentiment.

Physically his major problem is thick mucus pooling in throat.

Thank you for taking the time Olivia to share your kind supportive words.

Jackie

[Why]

Olivia, I just wanted to relate a thought about Dagmar.

My partner was very sociable and life at work. He’d get emails when travelling that it was boring without him there. He was a great listener too and caring to colleagues. Positive

and so lovingly positive with our child.

but mnd has rattled that positivity. He read about Ed Rapp USA from Stay Strong and Answer ALS. Ed Rapp is impressive. He was on with world renown Dr. Rothstein from John Hopkins. Ed had stayed well for 5 years and has a protocol but he did quickly admit while co speaking that his Dr (Dr Rothstein) would say he is simply a slow progresser. My partner says same about Dagmar.

that said I did see studies that do seem to indicate, as you say, that poor emotional well being leads to poorer outcomes.

it may sound silly, I don’t know, but his heavy mucus problems are so distressing more so than anything else. Constant need to try to consciously swallow unsuccessfully thick mucus.

that adds to his despair.

thank you again for your support

J

[LindaB]

Hi Jackie really sorry to hear of your partner's diagnosis, devastating.

I'm someone who decided not to look too much into research...just because initially I felt it more important to care for my emotional health and well being.

Whatever 'caused' me to develop MND has happened and here I am. Really irrelevant to me if a scientist said oh it's because you had a lot of stress in your life...because that wouldn't change the diagnosis. I can't unfortunately turn back the clock.

I fully understand that some people feel a need to be able to 'blame' (for want of a better word)something or anything for causing the diagnosis. Really that in itself can be counter productive & damaging to psychological health, in my opinion.

Feeling guilt over a diagnosis must be awful to manage and my only suggestion, for what it's worth, would be counselling. Loss in any form can be difficult to process and overwhelming.

Take care and I hope you'll keep posting in the forum.

[EvelynMW]

Only noticed this thread today (28th Nov). Not been on here for a while. I assumed my mother got MND from mental difficulties as she'd seen her father abuse her brother, and had other difficult things in her childhood (born in Vienna, father nasty and later in Dachau). We read something about a particular nut or seed causing problems in our bodies. However, I now know that my MND is one of the few familial types; perhaps the physical and mental difficulties acted as her 'trigger'. No idea how mine got triggered! Will certainly look up the '6 steps' mentioned.
My mum also had severe mental issues, and was given shock treatment in the mental hospitals she attended. My father ended up refusing to allow these. Again, we wondered if that was another trigger.

My sister is 5 and a half years older than me, has suffered long term with bi-polar, until recent medications. Following my diagnosis of the C9Orf blah blah gene, she got tested for it too. Both of us sibings have the gene; her daughter is trying to get a genetic test as she recently gave birth. I think she is much more worried than us. Haven't told my dad about me, he will be 98 in December, and although he has short term memory problems, we decided it was better not to tell him.

Apologies! Have rambled on too long!

[Why]

Thank you LindaB