Self Guilt over ALS

[troy]

I am sorry if I have asked the stupid question on Lung Cancer/ALS earlier. I just wonder if there are any worse disease than this damn ALS.

I am recently diagnosed and is really devastated. I fear the unforgiving aspect of the disease. As it is, they are progressing on all fronts like a freight train.

But I have an additional psychological hurdle that makes it harder for me. Due to my carelessness and a slight lapse of concentration, I slipped and banged my head real bad. No concussion but I knew instantly something bad happened. My symptoms began just 2 weeks after that incident. Through discussion with my neuro, and through what I have researched, I am very sure that the CNS injury that I had was the trigger of my ALS.

Friends of the forum, I just couldn't forgive myself. My life was perfect just a couple of months ago. But through a careless incident which I am to take blame, my whole life changed in an instant. Why am I being punished so dearly with such a small mistake, such that I have to pay by torture till crippled and death? I mean, there are many more bad bad and ugly blunders that others have commited, but most escaped with just small health problems or even just financial loss. I really would have prefered that ALS has striked me at random without any fault on my own. I just couldn't get over this and it is a double blow to me. How I wished and dream every night that I could just turn the clock back to that instance and avert the fall. By the way, the fall was not any initial sign of weakness, as I was 100% fit. It was caused by a wet floor.

Tell me, how can I overcome this? What curse is cast on me such that I have to die slowly being crippled and finally death and knowing that I have caused all these to myself?

Sorry for the rambling...

[janf]

Troy Don't Blame Youself I Too Have Als That Could Of Been Caused From One Of My Falls Just Being Stubborn, Putting Up Christmas Decorations Or Riding My Bike In The Pitch Of Night. I Don't Understand Either But You Are Not To Blame . We Will Get Through This Together Ok Jan

[Al]

Hi Troy. I really have my doubts about whether a fall could cause your ALS so quickly. There are many people here that have suffered some form of trauma but I don't recall anyone having symptoms so quickly. I hate to disagree with a Doctor but I think this guy is wrong. Don't blame yourself. It's not your fault.
AL.

[quadbliss]

Hi Troy,

First let me say that no one knows what causes ALS. If your doctor told you your fall caused your ALS, you should think about seeing someone who specializes in the disease. Seek out an ALS clinic.

Second, guilt is a paralyzing emotion. It is just as harmful as anger, greed, or jealousy. It is certainly not your fault you got this disease. Bad things often happen to good people. It looks pretty random from where I sit.

Finally, you will have to grieve for a while. Everybody goes through this stage after diagnosis. When you finally grow to accept your circumstances, know that it doesn't have to be a miserable downward spiral. Many people live full, satisfying lives with ALS. I personally, have found a way to grow from this experience. I still enjoy life. This is not how everyone responds to ALS, but I want you to know it is possible if you look for the positive. You have a choice.

Mike
http://quadbliss.com/

[Peg B]

Hi Troy,

I fell many times after my finger started to curl in 2002. I thought I jamed it playing vollyball. Later I was taking Tae kwon Do at age of 51 and tore two maniscus in my knee - sparing with a young woman. (I won :-D and made in to a 1/2 blue belt) A few months later I fell on black ice off a porch and then my leg went numb a month later. This is all part of the same package and who knows - in 2003 I went to two neurologists who said my curling finger was a pinched nerve and not ALS or MS as I suggested . By 2006 I could not move my finger at all and got the first DX of ALS, which is not even a final DX. I may have MMN. I caused none of this and neither did you. Again I would venture to say humans like to think we have control over our lives but we only do to an extent. Taking blame for this makes it sound like you have more control than you really do. As others have said, see another doctor and count the blessings you have. You are not at fault. Sincerely, Peg

[jimercat]

troy,

Please don't beat yourself up with this idea that a fall caused your ALS. If we really knew that trauma to the CNS was the cause, then researchers would have something to reverse engineer and the cure would have been found by now. IMHO

As Al pointed out, symptoms coming on that fast just doesn't sound right. Are you seeing an ALS specialist?

[hope]

Troy,

I am sorry that you have ALS. It is a devastating illness and it hurts. I believe no question is stupid, at the time this is how you were feeling and you asked the question. You were probably going through many emotions at the time and this site here is a place where one can express how they feel. We may not all agree on what someone else says but we have to respect that we are all different and it is okay.

I do not think it is your fault that you got this disease. No one knows what causes this illness. Your fall may not have had anything to do with this. I know I have asked myself many times over and over what causes this. There are no answers, but some day hopefully they will know what does and find a cure which we all want so desperately. It is truly heartbreaking to be in this. I have watched what this disease can do and there are no words to describe the pain my loved one is in. We hold each other close, we hold on to the hope of a cure. Yes cancer is a very devastating illness as well, all diseases that change one's life can be very painful to live with. The one thing we do know about cancer is there is a hope and there is a possibility for some to be cured but with the als we do not see the rainbows that we need to see. I hope I have helped you a little bit today, we all asked questions, we are human.

hope.

[MtPockets]

Troy, even the most gifted scientists in the world do not know what causes ALS. You are wrong to make this assumption and blame yourself. ALL of us who have a dx of ALS go through mixed emotions for a period of time, this is normal for the process. ALL of us look for reasons,
WHY?
WHY ME?
What did I do to deserve this?

Understand, you are not along. We are here to help you along the way. And to answer any questions you may have to help support and encourage you in any way possible.

God Bless
Capt AL

[hboyajian]

Troy, It may be that the initial symptoms of ALS, not noticeable to you, began before you fell, and that your instability was really the beginning of the disease, which resulted in the fall, rather than the other way around. In any event, neither ALS nor the accident were your fault. Feelings of distress are totally understandable, but try to take a deep breath, let them flow through you, and be kind to yourself. Holly

[paula-jane]

Troy...
I'm so sorry to hear that you have to go through this.. ALS is the worst disease I have seen. I try to help my mum (Diagnosed 03/07) see that no matter how bad we think we have it.. that somewhere out there.. someone else has it worse. It would appear to some on this forum that their signs of mnd seemed to be obvious after a trauma... who knows what triggers some forms of ALS.. who knows why.. or how. All we can do is live and love one day at a time. It will take some time to come to terms with your diagnosis. There will be periods of grief and you may never get the answers to your questions. There will be bad days and believe it or not.. there will also be really great days. Try to stop beating yourself up over your slip on the floor.. that part is over and done with. We can't change our path.. but, we can try to make the most out of everyday. I have an incredible issue with guilt.. I would feel guilty for everything, even if I had nothing to do with the situation.. I have learned over my mum's 9 month struggle with ALS that guilt is pretty useless.. ALS is crippling enough.. there isn't room for both.. so guilt has to take the back seat. When I do struggle with my guilt and my mum's illness.. friends and family are quick to remind me that: There will never, ever be enough I can do for my mum and therefore I will always feel badly because I can't change what is happening to her. The people on this forum are wonderful and you will get support anytime you need it. The people on this forum are touched by an MND one way or another and their experience is second to none.

[pmbenb83]

Troy ~ When I read your first post, I sincerely hoped and prayed that you did not have either disease. I'm so sorry that you are having such problems. I agree with the other posts that you really should get another opinion, specifically from an ALS specialist. My husband is having severe issues, which could be ALS, but we aren't giving up hope that it may be Lyme disease or some other disease that mimics ALS.

Also, I just remembered reading an article at one of my husband's appointments about our soldiers who are coming home with traumatic brain injuries from the blasts of IEDs. They look absolutely healthy some without a scratch, but the explosion caused an internal brain injury. Maybe your fall caused something more like this instead of ALS. It sounds too soon for a head trauma to cause ALS. A second or even third opinion is definitely warranted.

Take care and keep in touch to let us know how you are doing.

Pam B in Va

[janf]

Peg b SO STRANGE MY FINGER CURLED FIRST AND I GOT CLUMSEY . i FELL MANY TIMES ALSO HMMMMMMMMMM WHO KNOWS MY DR SAID I HAD SPURS ON MY NECK. JANF

[Peg B]

Hi Janf,

Wow! I was just on the MMN website and I came back here and saw your note. It's like a validation of some random things making sense. I can't explain it but your note makes me very happy and less confused. It is all such a big puzzle. Thanks, Peg

[emjoi]

I know my father at times wondered if he had done something wrong and God was punishing him. Considering he was an extremely kindhearted man, and whatever failures he may have had were minor in the Grand Scheme of things.

But he also had a much better philosophy of "It Is What It Is", which I liked a whole lot better. There was no Reason or Punishment or Blame to be laid. It just was something that happened.

I think that falls and bumps get you into the eyes of the doctors. Problems may have been slowly developing for a while unnoticed, then an accident occurs and for some mysterious reason you aren't healing like you should...

[Mary Helen Barr]

When my father was diagnosed 6.5 years ago, I read so much on the disease. I remember reading that by the time the symptoms start showing up, you've had the disease already for quite a while. A lot of nerve damage has to have already happened by the time you notice symptoms (so I've read). A fall two weeks before onset of noticable symptoms is much too recent. My father fell, too, and hurt his shoulder around a month before he noticed arm/hand weakness. He blamed my mother (and probably still does at some level) for the ALS since he tripped over her suitcase while they were on a trip. The neurologist says that a fall is absolutely not the cause. Don't beat yourself up, because your "carelessness" did not cause your ALS.

[MtPockets]

There is some minor evidence for head trauma in men over the age of 55 to have a higher chance to develop ALS. In my case I had a head injury about 15 years before I developed any symptoms of ALS. I'm now 60. This type of ALS onset takes a long time, not just a few weeks or months.

So there is no way you could have gotten ALS that quick from a fall. There is no one listed in all the studies of head related injury and ALS that has an onset of symptoms that fast. It just does not happen, so be at peace my friend.

You can relax about your fall causing ALS. You need to look at other diseases and get the tests that will make you feel comfortable about what is going on with your body.

I hope you find out soon what is going on and get some help.

God Bless
Capt AL

[Peg B]

HI Troy,

I hope I have not been too hard or cold with your cancer question. It is a terrible blow - this DX. At first DX, I did ask the same question in your later post. = "Is this the worst disease?" So I went on the website ask.com = "The worst diseases" ALS was not even listed. If you want - try it. In a twisted sort of way it made me feel grateful. I never heard of any of the diseases listed and they are super awful.

I did ask my sister about your question re:cancer vs. ALS. She is a 10 year suvivor of breast cancer. She quickly responded "It depends on who has it." I think it was a wise answer as it all depends what we do with what we got.

In my family the motto is: "be grateful for you have as it can always get worse." I know that sounds pessimistic but it really isn't. I hope you feel more peaceful soon. Did I help or make it worse? Sincerely, Peg

[troy]

Thanks to everyone who took the time to console me. I am sorry to say that, as much as I would like to believe you that this is really not my fault, I cannot write it off my mind. I know the link can't be so coincidental. I mean, what are the chances of getting ALS? Probably 3 out 0f 100,000. There has to be a trigger and the head bang is it. I might have gone a bit too far in saying that the symptoms started 2 weeks after the fall. It was my speculation that it probably started around there as I get beginning symptoms about 2 months after the fall. I tried to trace back the build-up and arrived at 2 weeks. I probably should have said it started about 1 - 2 months after the fall. And, I have read quite a number of posts of others' onset about that time range after trauma too. I read about a guy who seemed to get it a few months after a bang on the head after a slip in the wet pool during a sunny outing.

Another case involved trauma when forehead smashed into windsreen and ALS developed months after that.

This is about an officer who got ALS after head injuries sustained in a fight with criminals.
http://www.abbotsfordpolice.org/nm/publish/news_414.html

I really feel the guilt so much that the first thing that strike my mind when I wake up is a sense of utter despair on my ALS diagnosis, and then followed by overwheling guilt on my role in causing all this. I hate myself for being so careless. I would scream to allow me to turn back the clock. I repeatedly ask why punish me so much for a small mistake? How do people live with such guilt? I remember reading the news of how Cristopher Reeve was completedly paralysed from a riding incident, and asked if I could forgive myself if I was in his shoes. I remember sympathising with him so much because he had such great future and a great wife for him and an able body to enjoy all he can, and all it took was a fall for him to be a quadriplegic instantly. Little did I know then that I would face with such mental torture years later.

I probably should have at least 30 - 40 years of productive years ahead of me. Just when things look so good, and I am at a stage of prime of my life, my kids and wife are wonderful. Thing could not have been better. And all it takes, is just a slip of attention, and the rest, they say, is history......

I feel like dropping from the top of heaven straight into the bottom of hell..in an instant.. the superman way....

And feeling like that does not help me with the uphill battle ahead. I know. But I couldn't help it. Sometimes, I feel like blowing my brains off, to turn it into a real blunder, a real blunder that deserves grave punishment like crippling and death..

I just cannot accept or rationalise how one's life can change in one second...

Tell me, how do I deal with? Should I just take it as my own fault and move on? Can you do it? How can I forgive myself?

[puzzled36]

Troy,

I think you need to put things in perspective. have you ever smoked or been around a smoker? If yes, your at risk for cancer. Ever drive a car? You could have wrecked. Life is full of risks, if you tried to avoid all of them, you would not have lived - only existed in fear. You are at the right age for ALS. You are a male, making you higher risk. There are lots of people who can think back to a head injury (I myself had a machine fall of the shelf in the closet) before their symptoms began. Thats because bonking your head isnt uncommon. There are hundreds of thousands of people who suffer minor head trauma and dont get ALS - why not? Because its not the link.

Get past 'why did I get this' and get on to 'how am i going to make the best of it'.
Good luck.

Gina

[MtPockets]

Ok, it's all your fault. I'll join your little pity party. "There has to be a trigger and the head bang is it."

How could you have been so stupid as to "slip" and fall? Yes anyone who does something stupid, like go through an intersection and get hit by a drunk driver, running the red light, deserves to be injured for life.

Maybe they are stupid enough to go to the mailbox in the rain and get struck by lightening, yes it's ALL their fault. I guess they too can never forgive themselves. I guess if a meteorite fell from the sky and hit you, it too would be your fault. I think not, because no matter what we say, you are determined to blame yourself for something that you did not and cannot control. I could go on and on, but do you get the picture?

As if the possibility of ALS is not enough now you speak of considering suicide, now that would be your fault.
I have read everything I could find about the cause of ALS and after years of researching, I do not find one piece of evidence where any doctor or scientist knows what causes ALS. But you know more than any of the scientists and doctors, right? Because you have decided to be miserable and blame yourself for your condition.

It does not matter what any of us say, because you are happy being miserable, or else you would consider other possibilities.

Now, I'm leaving your pity party. I hope you enjoyed the company.


Back to reality.
Been there done that does not even come close to what we all have experienced when we learned we had ALS. We have gone through all these weird emotions, and learned to live one day at a time with our bodies just the way they are. You have a choice to make.
Do I focus on the past?
Or do you focus on the future?
Which do you chose?

I know it's not easy, but you will be surprised what you are capable of doing if you will focus on living life to it's fullest, while you have the time. Get your mind off your illness by traveling, doing something that you have always wanted to do, but never took the time. Think about how your attitude is affecting your family.

Yes, this is an awful disease, but there is nothing you can do about that except, change your outlook on life. Be thankful your not dead from a heart attack, car crash, or shot by a mugger. Many people never get time to prepare for the future. To spend quality time with their family. Use the time you have left wisely, not sitting around feeling sorry for yourself.

I would not have been so blunt with you, but I care about you and want to see you enjoy the time you have left with your loved ones. Please do not make their lives miserable by continuing to live in the past. You cannot change the past, but you do control how you face the future.

God Bless
Capt AL

[liz]

Amen!

"It's random."

[CindyM]

You cannot change the past, but you do control how you face the future.


Ditto, AL and Liz. Cindy

[Peg B]

Thanks Captain Al. You said it well.

Troy,

It does not sound like you have much support. Get yourself to a good therapist to help you with this. Your wife and kids don't deserve to be punished either and your ideas are not helping them. Stop now and get some psychological help to deal with this crisis please. Peg

[troy]

Let's assume that my head bang has led me to developing ALS. It's not proven and it can never me proven, but let's assume that head trauma leads to ALS for argument sake.

My question is: if you were in my shoes, or you actually had a head trauma, and subsequently developed ALS and your neuro told you that you have caused the ALS upon yourself by being careless, ignorant, whatever...

How do you reconcile your emotion? How do you accept that your slip of attention for 1 second, rob you of at least 30 more years of good life? Can you forgive yourself? Please think of the question seriously before you answer. Can you still carry on? You know that, had you been more careful and averted the fall, you are out there enjoying life right now without even knowing that disease like ALS even exists. I always thought to myself......"what if I had averted the fall......" It's the severity of the consequence of this fall that I can't accept. A naive and simple mistake, but GRAVE deadly consequence.

I am still very disturbed by this whole thing. I hope for sincere help. I thought of seeking psychological help from professionals, but I would like to hear from forumers here, as we have first hand experience of ASL.

I do accept the views of some of your posts that accidents do happen. I know, shit happens. But I just find it hard to accept. There is no sense in the punishment.

[Icanmanz]

Hi everyone! I am having problems replying to posts when using "Quick Reply" I wonder why. I could still reply to posts by clicking on "quote," but when I click on "quick reply" it does nothing. It just started doing that tonight. Has anybody had this problem before? Thanks!

Irma

[Al]

Some of our software was changed tonight. There may be a few days of glitches to be ironed out. Bear with us.
AL.

[John1]

Some of our software was changed tonight. There may be a few days of glitches to be ironed out. Bear with us.
AL.Al,

I noticed that sometime during the past day all the locations of members have disappeared. I guess this is one of the glitches. I find the locations the single-most helpful information when trying to respond to queries. I think it should be mandatory to include this when becoming a member. At the very least identify your country of residence.

John

[Saubier]

Troy,
Don't think of it as a punishment; it may be the gift that gets you living in the present instead of the future or the past. Above all, don't let the people who love and respect you see you falling apart. One day they may need the strength that you can show them now.
Pappy

[emjoi]

Troy,
Don't think of it as a punishment; it may be the gift that gets you living in the present instead of the future or the past. Above all, don't let the people who love and respect you see you falling apart. One day they may need the strength that you can show them now.
Pappy

Yeah. I've got agree with this.
You have a choice how things proceed from here. Positive or Negative.
This sickness can wreck your family, if you choose that path. Anger and guilt and blame and frustration.
Or it can help bind your family together. Bring them together to spend time with you, help you out.

Increase the Love or destroy the Love.

[emjoi]

As for the Question....

Okay, so you know you are just the victim of random crap.
Logically that makes sense.

Just in your heart, you wish you could rewind the tape, do things differently, take a different path. Everyone wishes that... unsay cruel words said to someone we love, say "Yes" to a job offer that we rejected... but of course that aint the way things work.

I don't know how you slap down the "I wish I had..." moments in your head. Maybe even literally slap yourself, tell yourself to "Oh stop it!", and find something else to think about and do.

Lame advice. Sorry.

[MtPockets]

There is an old saying when you "assume" anything, you make an ass out of you and me. ASS U ME. I know it's crude, but I find it very hard in this day and age that any certified Neurologist is going to tell you that a hit on your head caused you to develop ALS in just a few weeks or months. IT DOES NOT HAPPEN, MUCH LESS IN A COUPLE OF MONTHS.

At the very least I would go to an ALS clinic where Docotrs who deal with ALS patients every day have the expertise to test you and see if you even have the disease.

If you do,,,,,,How can you be so selfish as to ignore any family and loved ones and their needs during such a time as this. You have never discussed them on the forum. Why? ALL you keep saying is, me, I, Is that the focus of your life?

Or maybe you are just here to pull our chains and see how far we will jump. I don't know about you man. You have gotten answers from us about all your questions and keep on with the same questions as if you want to justify being miserable or something. What is your REAL problem. Why are you here.

Capt AL



Let's assume that my head bang has led me to developing ALS. It's not proven and it can never me proven, but let's assume that head trauma leads to ALS for argument sake.

My question is: if you were in my shoes, or you actually had a head trauma, and subsequently developed ALS and your neuro told you that you have caused the ALS upon yourself by being careless, ignorant, whatever...

[Peg B]

Dear Troy,

For the record, I am giving you my last response on this issue. Go to an ALS clinic as Captain Al said. And seek psychiatric help for this obsession that makes no sense and is doing no one, especially you, any good. Sincerely, Peg

[jimercat]

I don't even know if I should reply because you are really making me...a...I guess...angry!!!

TROY GET A GRIP!!!

Can you explain to me why my mother has fallen approx. 30 times in the past year, and recently bashed her head on the bedside table ( and I mean really bad ), yet she has no neurological probs? I know, cuz i took her to get the tests.

Trauma could possibly contribute to the onset of ALS if you perhaps (and researchers don't know) are predispositioned by some genetic makeup.

Is this the only trauma you have ever gone through??????

If so, you must have a very fragile body.

Let me tell you a story about a man named Don,
the poor old soul couldn't get his job done.
He went up a tree with a chain saw in hand,
next thing you now he was thinking he was dead!
Low and behold the neighbor was a doc
took him to surgery made sure he didn't lose his co*k!
Later down the road Don married him a girl,
then he felt sure he could conquer all the world!
Next thing you know he broke his two feet,
landed on his head but didn't skip a beat.
Then shortly later he spiral broke the leg,
well that didn't stop him til he really had to gag!

Couldn't swallow dear..... not even tea!


( OK I don't want any of you critiquing me on the take off on Beverly Hillbillies song )


The above is my husband's experience over many years, because he is a damned clutz. so just a simple slip and fall and bang of the head is really far fetched and if your neuro told you that the he needs to be flogged!!!


What I'm trying to say is all of this trauma happened to my husband over lots of years and last year he was dx with ALS. You just can't slip and fall and suddenly get "ALS."

You could've had ALS and didn't realize it when you were so clumsy!!! Just like my husband!

[Pythia]

... I am sorry ... this is really not my fault ... I might have gone a bit too far ... It was my speculation ... I tried ... I probably should have said ....

I really feel the guilt .... I hate myself ...if I could forgive myself .... I remember sympathising ...

I probably should have ...Just when things look so good...Thing could not have been better........

*************************
Troy,

Please look at the selected words taken from your post above. Go to your wife or a trusted friend and start a sentence with each of these phrases. Be honest with yourself - let out your anger, frustration, and rage. I hope that if you can acknowledge some things really are not your fault and others may be, but all things can be forgiven and everything is not dark.

Please keep posting! This is the one of the only outlets that I have to be honest; I appreciate that you have opened up to strangers on a forum. No matter the responses to your posts, please continue to vent your anger and frustration here rather than taking it out on yourself.

Pythia

[bala80]

Hi,

I'm one person that can directly relate to what Troy is going through psychologically and physically. I can trace back to a careless incident on my behalf, that in retrospect was definitely the trigger of my ALS symptoms, and the guilt is unbearable. I know it may sound absurd to most, so I'm not going to get into specifics as I doubt anyone will be genuinely interested. I've noticed Troy has not posted for a while, therefore I was hoping to get in touch with him in some way. Is it possible to obtain his email address from the moderators of this site? Al?

[hboyajian]

It is quite possible that ALS affects a person's sense of balance. For some people this can be the initial symptom apparent. I was sure my dad's spinal curvature-due to ALS-was caused by a head injury he suffered (tripped over a hose a neighbor had left out and hit his head on a brick wall). He also had an arm injury just prior to that when he lost his balance and fell on his shoulder. I now believe both these accidents were caused by the ALS induced balance problem. He wasn't able to respond normally in a situation where he would have ordinarily been able to regain his balance fairly easily--because he already had the beginning of ALS. Please consider this before assigning yourself a crippling load of self blame. Another piece of the puzzle is that he experienced terrible sea-sickness when on a boat ride about this same time, and he had never been sea sick or ever had any kind of motion sickness before in his life.

[CindyM]

Hi there. If you send a PM to a member, their private email notifies them that a message is waiting on this fourm. At least it works that way for me. Cindy