How did your ALS begin? Please read.

[Timbo]

Hello. I do not have ALS, but I know someone who does. This person's father died of ALS, and he always knew he could be stricken with the same condition. But, he had never worried about it.

Recently, he has been diagnosed with the disease. However, it started after a serious fight in the family. Emotions ran high, panic attacks, etc. It was a pretty serious situation. But, once things started to calm down a bit, we realized he wasn't the same. He blamed it on 'nerves' from the fight, but family members urged him to go to the hospital for his speech condition. (it was almost as if he was a little drunk or medicated - speaking slowly)

Now, either this is one hell of a coincidence, or his nerves played a part in the onset of his condition. Perhaps pushing his nerves to the limit caused some sort of adverse reaction to the "dormant" state, which has now accelerated faster than I care to think about.

Anyway, I was wondering. Can anyone pinpoint a time of their life where their ALS started to show? A traumatic experience, or anything of the sort? Anything at all that you could bet on that might have started the symptoms?

I'm very curious to know what everyone has to say, ...or to point me to a link where this has already been discussed.

Thank you.

 

[irismarie]

My AlS only showed in the last year but I have been convinced that my very very stressful life, STARTING 1978 with the death of my son and going on and on with pretty major issues , has played a part, if not THE causal part.

 

[Timbo]

My AlS only showed in the last year but I have been convinced that my very very stressful life, STARTING 1978 with the death of my son and going on and on with pretty major issues , has played a part, if not THE causal part.

Thank you for your response.

The only reason I ask is because I understand that there has been very little progress with treating ALS and other such conditions.

Now, my mother has an unrelated medical condition that also has researchers and specialists baffled as to a cause and how to fix it. However, there has been recent progress when asking patients if they have ever been sexually molested as a child. A whopping 60%+ answered "yes", bringing researchers closer to what may be triggering this condition (mental anguish, traumatic experience, etc.) Obviously, patients would never start off when telling their doctors treating them that, "What I was five, my father...". But when asked directly, the majority of the group raised their hands.

I figure, if ALS is hereditary, perhaps it would be good practice to medicate the patient's children with nerve medication to ensure they "keep cool" as to not trigger the condition.

Obviously a long shot, but I'm trying to see if there's any such connection with people suffering from this disease. ...there's a lot of things going through my head right now, and I'm just shooting in the dark right now. I hate to see this family member suffering in any way from ALS, but worse yet would be seeing his children suffer later on.

I'm hoping there can be a way to prevent it.

So, if anyone can think of anything even remotely related to some kind of mental trauma/stress that occurred some time before any symptoms of ALS, I urge you to share.

Likewise, I would like to know if there was no trauma/stress at all. If symptoms just happened to come forward 'out of the blue', I would be interested to know that as well.

Thank you.

 

[jimmyian]

I am a new member.Hope to share a good time.

 

[Timbo]

I am a new member.Hope to share a good time.

I'm a new member too. For what it's worth, 'WELCOME!'

Please stay on topic though. I'm sure that's a rule here somewhere.

 

[indigosd]

jimmyian, please pardon me if I read your post incorrectly but personally, in light of what Timbo posted about STRESS and sexual abuse I feel like your comment is very strange and your signature ... "inflatable bed-folding lawnchair" "hope to share a good time"?! is really very offensive. This is your first post and you put that on our forum? ALS IS NOT FUN!

timbo, "I figure, if ALS is hereditary, perhaps it would be good practice to medicate the patient's children with nerve medication to ensure they "keep cool" as to not trigger the condition." WHAT? How about protecting the children from sexual predators?! How about healthy families with healthy boundaries! I am so sorry but that is just over the top crazy.

I am STRESSED now.

 

[Timbo]

timbo, "I figure, if ALS is hereditary, perhaps it would be good practice to medicate the patient's children with nerve medication to ensure they "keep cool" as to not trigger the condition." WHAT? How about protecting the children from sexual predators?! How about healthy families with healthy boundaries! I am so sorry but that is just over the top crazy.

I am STRESSED now.

I'm sorry you misunderstood my post. I was just trying to give a real life example of a tramatic event triggering an illness. I, by no means, meant that 'we need a pill to help children deal with sexual abuse'. That's absurd. I can't believe I would even need to explain myself here but here goes.

Traumatic events come in many forms. A car crash, a cheating spouse, and even something as bad as sexual abuse. Heck, I know a few people whos worlds would crumble if the learned they failed university!

Events like this have been known to trigger certain conditions of anything from hair turning gray or falling out, night terrors, motility disorder, etc. ...perhaps even ALS?

That's my question.

 

[indigosd]

STRESS in and of itself is not bad. It is the homeostasis of life and is constant-both good and bad. The hormones that are released are the same regardless of whether it is POSITIVE or NEGATIVE STRESS! It is how we perceive it, internalize it and choose to respond/react to it that determines if it will be positive or negative and the impact that it will have on our lives, our health. You know, the glass is half full idea. Individuals need to learn better coping patterns to deal with stress :] Of course, it is possible and reasonable that an individuals perception and response to stress is a precursor to ALS just as it is implicated in most disease processess.

 

[Pidge]

My sons ALS kicked in after a very traumatic breakup W/ his girlfriend of many years they had planned to be married then out of the blue things happened & they broke up no one seen it coming anyway my son went into a deep depression stopped eating & taking care of himself. A few months after that his ALS symptoms started. It is not the fault of the break up it did not cause the ALS it was already there so no one is to blame but I do believe if you have the factors for ALS stress will get it started. I have also heard of people who have under gone surgery or had an intence illnes & their ALS symptoms started shortly after do to the stress. To much stress will also accelerate ALS so help your friend avoid stress as much as possible..

 

[handinhand]

I just have to share that I had been going through a very very hard time and I did have the twitching around my mouth start at that time. I did start to slir just once in a while. I even told Richard that My nerves were so bad. So I to thought I was just so stressed out. Well, it went on too long so 5 months after these events i went to the Dr. I was diagnosed in 3 days..... I have often wondered it these events didn't trigger this whole thing which was lurking inside me? Just a thought.. Linda

 

[rose]

I had a stalker, my home was invaded, there was a long time of unrelenting stress surrounding this whole situation. I agree that maybe my illness was lurking, and stress was what brought it out. Perhaps it was not inevitable, but, maybe it was...

There have been studies linking how people process stress (good and bad) to disease. Its been discussed previously on the forum how PALS seem almost invariably to be "nice" people. And what makes someone behave nicely? Part of the definition is how they react under pressure.

 

[halfin]

I was not having mental stress when my symptoms began, but I had started training for my first marathon, so the physical strains on my body were enormous. Now I had bulbar (mouth) onset though, not an area particularly working hard when running. So I don't know about the connection.

I do know that many of us have found that stress makes our symptoms worse. I was super busy and stressed in September, and had significant progression at that time. One thing about ALS is that it generally is going on for some time before you notice it. The body compensates for the initial nerve damage and you can't even tell. So it could be that someone already has ALS and doesn't know it yet, they get stressed and it speeds up the progression, so shortly afterwards it is bad enough that they start to notice symptoms.

 

[Al]

We've had lots of discussion about head trauma, surgeries ,metal fillings, radon etc. possibly triggering ALS. Use the search feature above. Lots of theories but nothing convincing.

AL.

 

[Timbo]

I really appreciate all of your honesty and insight. It's very interesting to hear that ALS seems to happen to 'nice people', because my family member suffering from this is also very nice. Remarkably so. He's also very fit and outgoing, and it seems much of the users here are as well. It always seems to be the selfless people in the world that end up with the most medical complications.

It's also interesting to hear that all of the people who have replied so far had undergone an unusual amount of stress some time before symptoms began. I will be searching more about the connection between stress as a trigger to ALS. If people would like to share more stories about their experience, please do. Even a simple "yes" or "no" will do.

I'm really hoping a way is found to prevent the onset. Even though no cure is known now, I'm hoping it can be prevented or delayed as long as possible for the children of those suffering (as I understand it to be about a 50% chance of the disease to be inherited).

I know this might sound crazy, but my goal is this:

Let's say stress is measured on a scale from 1 to 10 (1 being zombie-like; completely detached from the world, and 10 being completely overcome by doom, pain, pleasure or euphoria). Let's also say that regular every-day life can fluctuate a person's stress level to anywhere from a 3 to 5. ...if it seems that the majority of ALS cases started once a stress level of 8 or more was reached. Then, would it be wrong for me to want to prevent a person, with a 50% chance of having the disease, to never be able to achieve a level of stress of 7 or more?

Perhaps medicate offspring with a dopamine inhibitor or something of the sort. ...to medicate with anti-depressants even though no depression is present currently. A safeguard. ...perhaps something as simple as taking classes to learn how to deal with stress as a preventative measure, similar to those for people wanting to control high blood-pressure.

I will be doing a lot more research in this direction, but I wanted to ask the forums first.

 

[handinhand]

I think that would be a very good study. Go for it... Linda