Emotional Lability insights [Archive]

halfin

11-02-2009, 07:30 PM

Emotional lability (EL) is the most interesting symptom of ALS that I've experienced. Weakness and stiffness are just frustrating, as are speech problems. But unusual emotional displays are quite unexpected in a disease which is said to not normally affect thinking. It seems odd that the same brain systems that when damaged produce muscle weakness can also somehow make you laugh and cry.

I had EL come on pretty suddenly about a month ago. There were some hints earlier, slight exaggerations of normal emotions, but then suddenly I was crying ten times a day, and had several episodes of laughter in sad situations. Fortunately the meds I am on have helped quite a bit, eliminated 80-90% of it. But I still feel it somewhat.

What I learned was very interesting. The emotions are actually real, or at least based in reality, but normally I completely suppress them. The case of laughter in sad or unhappy situations brought home the embarrassing realization that I actually do find something funny about them. In fact, if you look at what things people laugh at, especially low-brow, unsophisticated humor, it is often someone getting hurt or suffering some misfortune. Think of old movies like the Three Stooges or the Little Rascals. I'm sure young people can find plenty of examples on youtube. Sad but true, people laugh at the misfortunes of others. Normally we completely suppress it, so much that we are unaware of it. But with the EL, it comes out. That is how it seemed to me. (Note that I have not been even a little bit tempted to laugh at my own injuries!)

The tears are interesting as well. Conventionally, we say that people cry when they are sad, but that is not the whole truth. People also cry when they are happy. In fact I believe that tears are a common expression of a wide range of emotions, if they are sufficiently strong. Most of the time, when I get tears as a result of EL, I am neither happy nor sad. I am experiencing an emotion which is hard to describe. It is a common emotion, and in retrospect I can recognize that it has always given me a feeling of warmth that might cause a slight tendency for my eyes to moisten, but in the past I was always able to suppress it. Again, I was hardly aware of it.

This emotion is kind of a combination of happiness and sadness, and comes on when I think or talk about something amazing, surprising, inspiring, moving, or any combination of these. The closest word I can come up with for the emotion is awe. Usually we associate that emotion with strong feelings, but I find that I feel something like awe many times a day, to a small extent, and those are the things that make me cry when my EL is acting up.

In fact I do find myself quite amazed and awe-struck to find myself in the bizarre and unexpected situation we all share, going from the prime of life to the sudden realization that this disease will bring total disability in a relatively short time. It is sad but it is at the same time utterly amazing.

hopingforcure

11-02-2009, 07:34 PM

Wow, you are such a gifted writer, and have a way of really capturing what I feel. I really am grateful for your post, and think it is so true and so informative. The best post I have ever seen on EL. My husband did think I was serious when I called it Emotional Liability.

brooksea

11-02-2009, 07:48 PM

Very insightful and interesting! Makes a lot of sense! And you know what? When my husband laughed uncontrollably during a serious talk about funeral arrangements, I also began laughing as I could see the humor. But it was still startling and disturbing at first.

BethU

11-02-2009, 10:31 PM

The most interesting EL experiences for me have been the bouts of euphoria, which were mind-bending. (I say were, because unfortunately, my EL meds have eliminated them too.) They came about in situations where I felt I was seeing the world for the first time, and it was like the first day in Eden. These completely new, mind altering perceptions were extraordinary, and happened in the most mundane situations... the grocery store, riding in a car, etc. After a while I found that I could call up these altered perceptions, and that scared me a little, because I figured I'd get arrested if I stood in the store too long looking around me in amazement.

Another EL I've experienced is rage, and as Hal said, once it was triggered by a logical event. (Most of my breakdowns haven't been.) At the neuro clinic, during an EL drug trial, I was trying to tell the doctor that the latest issue of meds were different and were not working (must have been a bad batch), I got weepy, and she tried to sooth me ... "There, there, I know how it is." And I screamed "THE HELL YOU DO! YOU DON'T KNOW A GODDAMN THING ABOUT WHAT IT'S LIKE HAVING ALS ..." etc. And lunged at her. Of course, this was with 90% of my speech gone, but she got the message and ran for help with me still screaming. Then the emotion passed, but the screaming, weeping, shrieking, went on uncontrollably for about 20 minutes, while I typed "This is just EL and don't worry about it, it will stop by itself" as people stood around and stared at me.

What I have experienced is that the EXPRESSION of emotion is completely unnatural, to me, at least, and that's what I was told by my neuro happens. Feeling emotions and expressing them happen at two different places in the brain, and the part that is messed up is the expression. I've walked through stores and parking lots shrieking the most gawdawful sounds and sobbing uncontrollably because the bag boy remembered that I take paper and plastic, and I was so touched, I broke down and the EL just took off.

I've never had the laughter, but the sounds I make crying and in anger scare the heck out of me. It's like something pre-human. If I didn't have meds, I'd never leave the house, as there is no warning and it's so humiliating.

Zaphoon

11-03-2009, 12:21 AM

Hal and Beth, those were two very insightful posts on EL. Thank you!

I'm just going mad. No EL, just mad and I think it has to do with the constant crappy feely from continual cramps and spasticity. I get annoyed by people doing stupid things where as before, I'd hardly notice stupid people. In fact, stupid people were my friends! Now I even call them names (names I wouldn't have called them before). I also mutter things under my breath.

We had company over recently - my wife had to have these folks from church over for lunch on
Thursday. This couple came over with their kids and there wasn't enough room for everyone at the table. I wanted to get the card table out but couldn't find it and uttered that four letter "S" word under my breath. The dear, saintly church mother must have heard me because she had this look of shock on her face.

What do you do? Are you suppose to confirm your suspicions that you've been heard muttering a slight nasty. "Excuse me, sainted person, but did you just hear me utter what I think you heard me utter?"

With me, my subconscious is overwhelmed by what my conscious mind is supressing, that being the constant, nagging muscle cramps and stiffness. Suddenly, things flood into my conscious from my subconscious and I say things I ought not, mainly to myself.

In my case, I don't think I have true EL, just a worn and frazzled mind from trying to ignore all of the "discomfort".

Zaphoon

paleshia

11-03-2009, 05:24 AM

so i have been wondering about the whole EL thing for a couple of days, thanks for your post Hal.....i do laugh a lot, uncontrollably even, but at funny stuff...like i had an idea on halloween that was (to me) so funny i couldn't even share it until the laughing passed. we stopped in for the free black jack tacos they were giving away at taco bell and i thought; wouldn't it be funny to go home and print off coupons for free black jack tacos (expiring that day, of course) to give out to trick or treaters. ok, maybe i do have EL, because that just struck me as hilarious.

so for the serious side, i can't really talk about my ALS, how I am doing, about how my kids are doing without crying...but is that EL or just that the whole darn thing is just plain old sad. It really is cry worthy, but if i can't share with people, is the disease robbing me of more and am i missing some kind of purpose? is it time for meds? but i am really afraid of not being me on the meds, i don't want to miss out on things i need my emotions for...like the other day when my 6 year old and i watched leaves fall off the trees and just marveled at how they seemed to dance all the way down.

John1

11-03-2009, 08:47 AM

Some really thoughtful and insightful posts here. Thank you.

I think that I have a mild case of EL. My responses to situations are exaggerated but generally appropriate in a conventional sense. It tends to move me more toward tears than laughter but at both sad and happy events. And I think even when I laugh at "inappropriate" situations, there really is an underlying humorous cause but normally I would have suppressed it for convention's sake.

Overall, I rather enjoy my EL because it puts me more in touch with my feelings.

tajmom

11-03-2009, 10:28 AM

I just started meds for EL and I am looking forward to a lessening of symptoms. Parenting is difficult when you laugh at your kids when you are upset with them. :-) I also laugh when my kids cry which makes them feel bad. Doc tells me I will see results within days!

Erica

11-03-2009, 10:55 AM

Hal and Beth, thank you very much for such insightful and thoughtful posts.
My EL is more geared toward crying: I cry numerous times thru out the day. I starded Lexapro 10 days ago, but so far no results.

pvale

11-03-2009, 11:43 AM

I think I also had a mild case, but I would laugh or cry at the stupidest things. The Amitriptiline Hydroxide the Dr has prescribed me seems to put a stop to most of it. I don't know how to write my feelings as well as some in earlier posts, but it's one of the most confounded symptoms of ALS there is.

Perry

Zaphoon

11-03-2009, 11:54 AM

My last post on this thread probably wasn't as insightful as those of Hal or Beth - my apologies for lack of introspection.

Is anyone else willing to confess (gotta love that word) that your emotions have been altered not by EL but maybe by just becoming tired of the constant crappy feeling. Anyone else get worn to the bone like this?

The cramps have picked up a notch, really bad in the mornings with my leg muscles shape shifting. Oh joy!

On top of that, (another confession here folks) I'm guilty of holding back the mini Hershey bars from the trick or treaters and handing out the mini tootsie rolls instead. The Hershey bars wound up in my freezer for "you know who".

I'm just really bad lately. I would like to apologize to all of the kids I cheated on Halloween night.

Zaphoon

rose

11-03-2009, 12:06 PM

Like John, I'm in the "mild" category. At first, before diagnosis, I thought maybe it was approaching menopause. Some things that trigger it, always seem to trigger it. Like, if I'm remembering back about what it was that upset me, it will do it all over again. (for a while)

I remember the very last trip I worked, (although at the time I didn't know it was my last trip) I was standing in the hotel lobby, waiting to be picked up in the crew van and taken to the airport, and there were these little stuffed animal cats in the window of the gift shop in various poses, and they started me to crying - what it touched in me emotionally I'm not so sure, I like cats, but come on! Anyway, that's when I thought to myself that no way that it was menopause doing it.

I can go a long while without episodes, but when I have one, it takes me a period of time before I can put it past me. Music, especially touchy feely songs, or ones that have special meaning to me are triggers.

BethU

11-03-2009, 01:47 PM

PZ ... Absolutely, we all get upset, angry, depressed at the whole condition with its frustrations and feeling lousy, and many things bring on anger and weepies.

What distinguishes EL for me is the uncontrollable and unnatural expression of the emotions.

As Rose said, looking at a stuffed animal may make normal people go "aaaahhhh, how cute/touching/sweet" but when you find yourself crying hysterically over it, that's EL. Or, when a dear friend tells you they have cancer, and you burst out laughing, that's EL. Or, when you find yourself lunging and screaming at your neuro, (hopefully) that's EL. :lol:

It's not having normal emotional reactions to a scary, frustrating, maddening disease. It's having abnormal emotional reactions, or out-of-control, unnatural emotional expressions in everyday situations. There really is a big difference.

Here is a link that shows exactly how I get in a "rage storm." The episodes leave me exhausted for a day or so. This was a woman missing her plane in a Hong Kong airport, and is from Youtube. And all the time your brain is saying, "OMG, what is wrong with me? Why can't I stop this?" Your body is completely out of control AND YOU CAN'T STOP YOURSELF FROM DOING WHAT YOU'RE DOING. It's like a seizure.

Another medical term for the condition is "emotional incontinence," which maybe makes it clearer.

YouTube- Hong Kong woman's airport hysterics

John1

11-03-2009, 05:49 PM

Rose I'd forgotten about music. I've spent a small fortune in recent months buying CDs. Mostly female vocalists and mostly love songs and string and piano classical music from the romantic period. Listening to them offers a whole new intensity level. My daughter once told me that a Chinese friend of hers can't listen to Western classical music because it is too emotional. Now I understand what she meant but I love it.

GlenBrittle

11-03-2009, 06:07 PM

Wow , look at all of that information. I have to ask "Where did you hide the spycams in my house ?"

I confess that the emotions are a little on edge lately. Anger, which usually takes a lot to surface, has been turning on like a switch. I have had to guard against it.

I am on meds for the EL and they are working well. I was crying at little kids , the bad guys getting shot , stupid commercials , and anything that would even come close to touch your heart. I am glad to be not doing that anymore.

brooksea

11-03-2009, 08:34 PM

Hey Glen - That was my husband! Crying at commercials about kids that need cancer treatment or some such.

However, he started being angry, I mean really angry, at our own son for having a spat with his little friend - but my husband would not have patience to get the full story. My son was really starting to show the negative side affects of this and that's when I told my husband he HAD to take something to help this problem.

Lexapro has helped.

chefdeborah

11-03-2009, 09:10 PM

I am having problems with EL, but I didn't know what to call it! Since I was just dx a week or so ago, I haven't had much experience with this. I know I have been having problems with crying at anything. I told the doc I could read a grocery list and cry. I haven't had the problems with laughing. I can't laugh anymore, really! Has anyone else had this problem? I can't for the life of me, laugh. And I really can't cry, as one poster said, I sound like a dying cow in a hail storm! My little doggie was barking at me the other day when I had a breakdown. What do I ask for when I go to the doctor? I don't have another appointment until the latter part of this month.

I don't know what to do. I am so new to this. I am having problems speaking....swallowing and breathing. I am not so sure I will be able to speak by Christmas. It is getting worse by the day! I don't know what to do! Do you ask for antidepressants or is that something you don't want to take? I don't want to do anything that will make it worse!

Please help me!

chefdeborah

BarryG

11-03-2009, 09:14 PM

Ok, this really sucks when I can't watch Saving Private Ryan without a whole box of kleenex. Or see an A&W bacon double cheeseburger commercial without breaking down into sobbing. I am going to have to avoid the Remembrance Day (Veteran's Day) programs cause I will be a wreck. Not the emotional lability that Beth describes, more like emotional volatility. Think EV not EL.

Zaphoon

11-03-2009, 09:33 PM

Barry,

I love "Saving Private Ryan"! One of the best WWII themed movies I've seen. You don't have to have EL to weep during that one. Too many good guys get butchered.

PZ

BethU

11-03-2009, 10:02 PM

ChefDeborah ... call your doctor and see if he/she will prescribe something to help. Many people take anti-depressants and that controls it very well for most people.

There are also other meds that can control this. Most importantly ... don't panic about it. EL can be successfully controlled, and other ALS symptoms can be managed (or worked around) too. There are speech devices that help, and breathing assists, too.

I don't think your speech will deteriorate that quickly. You are under enormous stress right now, coping with the dx. That knocks all of us for a loop, but when you come out of your shock, your symptoms will probably seem severe.

Try (I know, it's impossible at this stage) to take it one day at a time. You will get on track and feel more in control soon. You are going through the hardest part right now. This may sound odd, but it does get easier.

Hang on. You're not alone in this.

GlenBrittle

11-03-2009, 10:43 PM

Barry, why did you mention the cheeseburger ads ? I am the same way , and I can taste them. Did you ever toss one in the blender ?

ChefDeb, Have you contacted your local ALS Rehab clinic yet ? There will be someone on your team that can help you get the EL under control. Paxil is working for me. As far as that overwhelming feeling , you are still in shock. Hang tight , we are here to help you.

Glen

KeeKer

11-04-2009, 01:29 AM

I totally understand you all and I don't have ALS. Just my stupid hormones going wacky! Cry at anything and everything. And yes, Rose, I cry at stuffed cats! Was getting angry before, now just cry alot! Every Monday and Thursday. Definately can't go to the Rememberance Day ceremonies!Or watch commercials, or read sad stories or watch sad movies (or any commercials or movies, come to think of it) Guys, welcome to menopause!lol

chefdeborah

11-04-2009, 09:28 AM

I have already tried several antidepressants, and they all make me want to throw up. I will keep on trying though. My speech is getting worse and the people around me have made mention of it. I can take the loss of speech, but the swallowing thing is a bit more than I can take. I love to eat! I was a chef! I have written about food, made food for important people, I LOVE cooking and EATING! This is going to be hard for me. I just don't know what to do next...

paleshia

11-04-2009, 09:40 AM

so sorry chef, my deepest understanding, and prayers for your strength......i wonder, too, how i will be able to handle all this...and worse, how my kids are going to handle it...they don't deserve this...none of us do......stay strong, you are not alone.

one of the hardest things things is letting go of all the dreams i had... i thought i would just be started the next part of my life, now that my baby is in 1st grade, full day. i wanted to open a bakery...i love to cook too. i also wanted to learn to play the harp my whole life, not gonna happen...unless you've ever heard of a one handed harpist...oh wait, the other hand is gonna go too, shucks:(

chefdeborah

11-04-2009, 09:55 AM

I always wanted to learn to play the banjo..yep, the banjo! I love Bluegrass music and the banjo just sings out to me. I am 57, so I have lived a great life, but had a lot of things I wanted to do too. I am so sorry that you are young and have this disease.

My children are grown, but they are still not handling it well. My hubby is not talking about it yet. He will listen to me talk about it, but he hasn't made any stab at telling me how he is handling it.

halfin

11-04-2009, 11:17 AM

Deborah, I know how hard it is right at first. I was diagnosed 3 months ago and in retrospect, that whole first month I was kind of in a daze. My mind was whirling as I tried to find some way to accept this and go forward. I am still struggling with it but I feel steadier now, and I am sure that you and your family will find their own way in the weeks to come.

The situation for your husband is a tough one. We guys tend to expect our ladies to take care of us! That works out OK for me, my wife is all over this situation, researching possible treatments, helping me out. She gives me a whole body massage every day which helps my muscles relax. But at the same time I think the emotional impact has been harder on her than me; for her the thought of being left alone is just unbearable.

Your husband has to deal with the same fears, along with the realization that he is going to have to step up to the role of caregiver, that you are going to be totally dependent on him in the near future. Adjusting to that reality is a real challenge for a guy. It doesn't help that men don't feel comfortable expressing emotions. But again I am sure that you both need to just give yourselves time to learn more about what is involved, and to adjust.

Do you know if there are any support groups meeting in your area? You might meet other couples and families who have been through this. However I must note that in our own support group, there is not a single case of a husband who is caregiver for his wife. In fact almost all the PALS are men, there is one woman but she is a widow. Maybe you will be luckier and can find a family who is in more of a similar situation to yours.

chefdeborah

11-04-2009, 01:51 PM

Thanks Hal for your inspirational reply. I have called and asked about a support group in our area, but I haven't found one yet. The lady told me that when I got my information from the MDA there would be some info in there. I hope so. I didn't think much of support groups until our daughter had brain cancer. When we attended them, we found out how much they helped. I hope there is one nearby and that I will find someone I can identify with.

Yep, you named it right, a daze. I am trying my best to remain strong for my family, but I have my times when I am alone. I have a hard time talking on the phone and that really puts me over the top. Hubby has been doing some research, but I think now that we have a dx he has stopped most of it.

Thanks for your post.
deborah

Erica

11-04-2009, 01:59 PM

Deborah,
Just to let you know that I'm thinking of you.Erica

chefdeborah

11-04-2009, 02:04 PM

Thank you Erica. I am trying to get to know most of the people here. I wish they had chat....
deborah

GlenBrittle

11-04-2009, 07:46 PM

Hey Deborah,

I think you need a bucket list. Put Banjo lessons on it.

Glen

rowland's wife

11-06-2009, 09:37 AM

Bethu

when you say you have bouts of euphoria like your seeing the world for the first time, it makes me wonder a couple weeks ago my husband had several bad days said he was going to stop eating, he was having almost panick like attacks of not being able to breath, and he does not need oxygen yet, then the next day he cried uncontrolably for about 30 min. then the next day he started saying I don't have als i'm going to get better im going to start walking and talking and go back to work, this was a very scary few days for me, I thought maybe when he was panicking that he couldn't breath it scared him into finally standing up to als and start fighting back, which he had not been doing before, since all this happened he has started to eat better he is a little stronger eating helps alot. But when I started reading these posts about emotional Liability, I now wonder if that is what happened,like he woke up and saw the world for the first time.

GlenBrittle

11-06-2009, 09:54 AM

Hi Rowlands Wife ,

Yeah , it does sound like EL . I am using 10mg of Paxil in the morning every day and it has helped a lot. I still have grumpy moments , but I think that is to be expected. If you start a drug treatment for EL , it is important to understand that it can take a week or two for the real effects to show up. IE: it doesnt work overnight.

Glen

chefdeborah

11-07-2009, 03:17 PM

I need a bucket list? I need several buckets for all I want to do before this )#$%#)&$ disease makes me where I can't do anything! I just got my MDA packet yesterday and where I thought I was doing okay, when I opened it and read all that stuff, I fell about ten stories!

I just don't know about all this. I am just not sure I want to live through all this stuff. I might try for a while, but when it gets tough, I might just check out to keep people from having to take care of me. I have always been the caretaker...not the "taken care of". I am just not sure I can do that!

I just dont' know.....

deborah

paleshia

11-07-2009, 03:35 PM

deborah, have all those same thoughts myself...there are many times i think "i just don't think i can do this," and there are other times when i want to cram in as much life as i can and teach my kids everything i can and figure i haven't really been given another choice but to handle it. as for life sustaining decisions, ie trach/vent....i can't even go there yet

we will have to listen to our more experienced forum members on how to learn to let others take care of us...i haven't got a clue

joelc

11-07-2009, 04:57 PM

GlenBrittle

11-07-2009, 07:29 PM

chefdeborah

11-08-2009, 08:34 PM

GlenBrittle

11-08-2009, 09:04 PM

Okay...who is Gordon Ramsay????? Is he someone who can cheer me up? Send him right over! I can't laugh, but I can take a stab at it! Is there anyone else here who can't laugh anymore? That makes me so angry!

deborah

Hell's Kitchen tv show. This guy has a real fowl mouth, but he knows his stuff.

Can you laugh on the inside ? I just smile and jiggle a bit .

Glen

peter57

11-08-2009, 11:03 PM

He also "ripped" into one of our reporters a while ago and very quickly got the short end of a big stick back from many here.
Some times i wonder if it not all a publicity stunt to promote his cooking show :?:

(i also laugh on the inside)

cheers :smile:
Peter

KeeKer

11-08-2009, 11:20 PM

Peter, heard there was flooding your way, you still dry?

Anastasia

11-09-2009, 06:33 AM

Iagree ,your expression re E L is very clear and well put together and has cleared a lot of queries I have been internalising re Ed s newly expanded ?? sense of humour!!!!!!!
Its been fine thus far as he usually is fairly serious and is so much better than a few months ago when he was so depressed and in shock after his diagnoses in July.
However I am aware he is being brave for all of us and as people have said, mixed emotions are happening.
I was so releaved to see there is the availability of medication if and when the symptoms become difficult for Ed to deal with.
Thank you for your excellent insight on this and I wish you well. Take care, Anastasia.

chefdeborah

11-09-2009, 08:03 AM

OH! I dont' watch that show! He is very foul mouthed! I wonder also if he just does that for the publicity. I make the most terrible sounds when I try to laugh! KInda like a donkey braying....so embarassing for a lady!
deborah

BethU

11-09-2009, 06:09 PM

Deborah ... that braying kind of sound is like the shrieking I do when crying. A completely new sound for me, and something that's very embarrasing. Lke ALS isn't bad enough without mortifying us! But that's where the EL shows most clearly ... in the expression of emotion. Don't know what happens in the brain to cause it, but I hate it.

chefdeborah

11-09-2009, 07:44 PM

Yes Beth, I shriek when I cry too...my poor little cockapoo just looks at me and barks when I have a breakdown. Then he crawls up in my lap and puts his head on my lap....I think he knows something is very wrong.

deborah

paleshia

11-09-2009, 07:49 PM

hopingforcure

11-09-2009, 09:50 PM

I agree, the sounds are just not fair. Like you said we just have to find comfort in are good mind. Ok yah that's it we have good minds... Is that good?

peter57

11-09-2009, 11:00 PM

Hi Colleen, thanks for asking

No flooding here, some around north of Sydney though.

We are currently in the middle of our hottest spell for November for ages.
Currently app 35 deg C (where Anastasia lives it a couple or 3 deg warmer so they will set new records too if it keeps up)

cheers (time for a Coopers)

peter

chefdeborah

11-10-2009, 08:03 AM

Ida has arrived here in GA! It has rained all night and I guess we have had around 2" by now and it is still raining and the wind is relaly getting up! Well, I guess that is a good thing...all the leaves will be down! LOL!
deborah

GlenBrittle

11-11-2009, 03:19 AM

yep, i often wonder why i sound so awful...i mean come on...can there be a little dignity here...a gentle cry, a normal laugh.....wow this disease sure does make you check your pride...way sooner than i thought i would have to

Yep , I checked my dignity at the door and forgot which door it was at.

I giggle like a retard (sorry to the challenged people , but you all know that sound). When in a crowd , yep , it attracts attention. {{oh shit they are all staring at me}}

Glen

chefdeborah

11-11-2009, 11:35 AM

I try NOT to laugh! Sound like a braying jackass! And like you say...EVERYONE LOOKS AT YOU!

My husband is making an announcement at church Sunday that is really going to upset me and I don't know how to handle it. I don't know whether to be by his side and sit there, or to go out and not make a scene. I am really upset over this and don't know how to handle it. He has to do it, but I feel like it is all my fault and it is, because of this #%@#$(*@) disease! He is an elder in our church and he is stepping down because of ME. He feels like he needs to take what little time we have left to do the things we wanted to do during our life together. I understand what he is doing and love him for it.....but I just hate to be the reason for it.

deborah

deborah

joelc

11-11-2009, 11:55 AM

............

GlenBrittle

11-11-2009, 05:47 PM

Deborah,

He is not doing this because of you. He is doing it because he loves you.
There is a big difference. I would be there to be proud of him.

Don't over analyze everything. It a waste of time that could be used for something more enjoyable. That is experience talking right thar ya know.

Glen

tmasters

11-11-2009, 06:58 PM

Glen, EXACTLY!

Deborah,

Look at it this way: Your husband has decided that he's going to spend what little time he has left on this earth to be with YOU! ...because YOU are his priority and not the congregants.

You should be so happy and proud. He loves you.

-Tom

BethU

11-11-2009, 07:01 PM

With all due respects, in a situation like this, where a lability outburst is likely, I personally would prepare for it by making sure I have taken my meds or taken something to help handle the emotions beforehand. It may be very exhausting for you when members of the congregation surge around you later, expressing sympathy.

I know, I know ... we should experience the moment and he's doing this out of love ... but as someone who has been embarrassed and exhausted by EL "storms," I've learned that some situations are going to trigger something, and this sounds like a big trigger to me. And this is the topic of the thread.

Would your husband consider submitting a letter to the congregation that could be included in a church bulletin, or read by the minister ... anything to make it less stressful for you? Does it have to be done right now, when you have not gotten your EL under control? Could he wait a couple weeks? Clearly, his decision to make this big public announcement has already put you under pressure.

If I'm out of line, please forgive me. I'm just thinking what I would be feeling in your shoes.

Zaphoon

11-11-2009, 07:35 PM

I like what Beth had to say on the matter!

I think it would be wisdom on your husband's part to step down without making a scene. He doesn't need to bring unwanted attention to you in a public setting.

This sort of thing can be done seemlessly; I know because I've done it myself. He can simply, quietly go to the leadership of the church and say, "I'm stepping down for personal reasons.". Nothing more need be said. He doesn't even have to say he's doing it for you. I think he should protect you by saying as little as possible.

I've stepped up and down in church settings and have done so without bringing undo attention to myself and family. No need to take a pulpit here and for who's glory?

Just my thoughts...

Zaphoon

paleshia

11-11-2009, 07:43 PM

i agree about making some adjustments to avoid the almost certain emotional breakdown. My husband is an elder in our church too, and as timing would have it, his 3 year term on session ends in Dec. He will not serve on the team again next year, for obvious reasons. I have him make calls that I don't think I will get through, and stuff like that. I also think you have the right to not be there for the anouncement if he does want to do it publicly. We are working on just how public our journey will be too, and it has to be on your time Deborah.....that's between you and God. If your husband wants to be more public about it and you're not ready, that is okay too.

this is one tough journey, huh?

GlenBrittle

11-11-2009, 07:48 PM

Beth & Zaph , I can also see your points of view. I hope we are not adding to her anxiety about it.

In the end Deborah , having been shown different viewpoints to the situation , Just do WHAT YOU FEEL IS RIGHT FOR YOU.

What do your instincts say ? Follow that.

Glen

Zaphoon

11-11-2009, 07:55 PM

Nicely put, Glen!

I don't mean to muddy the waters if my 2 cents wind up doing that.

Zaphoon

paleshia

11-11-2009, 07:56 PM

yeah sorry deborah, we don't want it to be more stressful for you...i will just pray for your strenghth and peace; whatever you decide.....

chefdeborah

11-12-2009, 08:22 AM

He announced he was doing this on the day that we got our diagnosis...in the middle of our meal at Kentucky Fried Chicken. I nearly died! I know he didn't mean anything by it, but he just had to tell me he had already told the other elders he was thinking about it and now he had made up his mind. He had already told me he was thinking about it and I had asked him NOT to do it. But, I understand what he is doing. I will just take some Xanax and go through it. So what if I sound like a braying jackass in church...might as well get it over with. He has been a great elder and I know it is hurting him as well as me. I think I am making this all about me and not about what he feels too.

I appreciate all your different ideas about how to handle this. I don't know if I will make it through this or not..I will let you know.

thanks for the love and prayers!
deborah

indigosd

01-09-2010, 01:44 PM

Well...learning another new lesson about ALS. It would appear that EL had taken up residence in my former SWEET husband's mind and body in the form of rage storms. :] I honestly never considered that it may be EL-I guess I thought EL was just the crying and the laughter-not this HORRID, UGLY and SCARY RAGE out of nowhere! He is on 20 mg of Paxil, just upped the dose about a month ago from 10mg. I/we need HELP!! I have noticed that he has become increasingly hostile and impatient in the last 6 months-the littlest things set me off and he obsesses over stuff to no end. Last night was H-ll night at the Bowers house. He woke me up at midnight because he was YELLING at the top of his lungs at Matthew. Not a pretty sound or sight to see/hear someone that is having trouble speaking or handling their secretions YELLING! Matthew was sobbing and Web was YELLING and pacing and looked like some of the pysch pt's I have had in ER. I had told Matthew that he could sleep on the sofa on the main floor because it is sooooo cold in his bedroom which is on the 2nd story. I never mentioned this to Web. Matthew's bedroom is on the upper story which means that the main floor is DOWNSTAIRS from him. Our family room is in the basement and that is where the TV is and also the kennel that the dog sleeps in during the night. Web has taken over the family room and is very territorial about it-Matthew and I seldom go down there anymore because it seems to upset him. Matthew went down to tell his Dad goodnight and mentioned that I had said that it was ok for him to sleep downstairs on the sofa. WEB WENT CRAZY! He thought that Matthew meant that he was going to sleep on the sofa in the family room! Matthew took off crying and running to get up to his room and away from this raging lunatic and I am transformed into Momma Kitty-not pretty. WEB WAS CRAZY and scary and out of control. He yelled just awful things at us. He could not/would not hear what I was trying to say just, was nuts. I made sure that Matthew was upstairs for his own protection-gave up trying to calm down the wild man and just simply and quietly told him to take his butt to bed. This is the man that was always so sweet, patient, calm and would never ever yelled at us. :[ Needless to say I did not go into the bedroom with him. I stayed up the rest of the night worried that he may go off again. This morning when he woke up he did apologize to me. He knows that he was wrong but didn't seem to understand that it was inappropriate and unacceptable!! I told him that we could not and would not have this behavior-not good for any of us. We have enough stress and misery without intentional adding to it. Does this sound like EL to the rest of you? I was really concerned for the safety of Matthew and I...he was that crazy and out of control. He is very subdued today but my back is killing me from being on alert. I have to confess that there was this little part of me that was thinking that I would be so happy when he couldn't yell anymore or come after us if he was enraged and that makes me feel soul ashamed. HELP-Does the medication for EL also help with these rage storms?? Living in the war zone and hunkered down in the foxhole!!

Katie C

01-09-2010, 02:26 PM

KayMarie... has he shown any other personality changes? This could be EL or it could be FTD... rages are definitly found in FTD. I need to find my link to the UCSF page on cognitive and FTD issues... Joel, I think maybe you have it on your blog? Anyway, I'll send it as soon as I can locate it.

BethU

01-09-2010, 03:36 PM

Yes, that sure sounds like the EL bouts of rage I got! I'm so sorry you're going through this.

And, yes, the EL meds I take handle it. I posted before that I lost it at a clinic visit (actually, it was during the EL med trial, when I got a bad batch, and they didn't believe me ... until this incident. It happened almost a year ago, and they're still talking about it. When I asked the neuro to up my prescription recently because I was having EL breakthroughs, he said, "Are they like that time at the clinic, when you scared the hell out of everybody?: I was lunging at them, screaming, pounding the lab equipment ... completely beserk. I ended up sobbing, typing on my Light/Writer "Sorry, I can't stop. This is EL." My episodes last about 30 minutes, but one went on 45 minutes. I was exhausted for days.)

And yes, EL can make you extremely irritable and quick to go from 0 to RAGE.

The best thing is the Quinidine formulary, but if you can't get that (and it's on the market as Zenvia) ask CJ what her husband is taking.

Good luck. Thank God I'm not an ALS caregiver!

jennbenn

01-09-2010, 03:39 PM

my dh seems to be having the same problems but wont take the EL meds. I just try to keep the children out of ear shot and remember this is not about me.

indigosd

01-09-2010, 04:51 PM

Seems to get "fixated" on things and becomes very distressed-almost paranoid. For example, the City gave us a courtesy call to move a little trailer that was parked on the street before they had to plow and he was sooooo incredibly angry. Insisted that they were singling him out and being mean and I heard about that one for days, over and over and over..Easily frustrated and quick to anger at the simplest things. The episode last night was just awful and scary. When cj is back online, I will ask her about her husband and what medication he is on. Jennbenn, I have a troop of cigarette smoking FLYING MONKEY'S as my backup and I was frightened by his out of control slobbering, purple-red face RAGE!!! very scary and I will slip him medication in his feeding tube with a flush as soon as I can get some!! Katie, tussen takk for the links-sounds like it for sure. :[

BethU

01-09-2010, 06:45 PM

Kay Marie ... I've posted this link before, but this youtube "tamtrum" is almost exactly what I went through in my clinic flip-out. Lunging at people, pounding stuff. Only difference, I didn't throw myself on the floor, because I could never get up again.

herbie the love blog: Hong Kong Airport Woman (http://kbweb.blogspot.com/2009/02/hong-kong-airport-woman.html)

People seem to think that EL is a little normal weeping or giggling at the wrong time, but it can be like having an emotional epileptic fit. At least the way I've gotten in. And rage? Big time.

This version has subtitles, and I now realize the poor guy in the business suit is her husband. No doubt wishing he had a gun.

irismarie

01-10-2010, 04:42 AM

all this has made me think a lot as I have been having huge angers lately. I had put it down to the fact that as I am dying anyway I might as well let out the anger and let people know what I really think. No more messing ME around, you know? But I wonder now if in fact I have been wrong and that my rages were unreasonable? But my anger has been so unlike the real me. I feel cold and hard, like I never have been in "real" life. This thread has been necessary for us all, I think...
But I still feel that my new hardness is reasonable. No more time should be wasted on accepting crap from others...cut to what really matters.

indigosd

01-10-2010, 10:22 AM

Beth, he wasn't like that. yes, the woman was out of control but it was sad to me, not scary. HE WAS SCARY :0 irismarie, this was not like rational anger that is justified. It was out of the blue, out of control, veryscary RAGE! Also, not anything like the man he use to be. YES, I agree that this is definately a time to not take any crap and there is sooooo much to feel angry about...it just needs to be appropriate and in scale and controllable, not threatening RAGE. RAGE is soooo different than anger to me.

indigosd

01-10-2010, 10:25 AM

FYI, Matthew and I are staying low key, out of his space and on hyper alert to avoid a repeat of that episode at all costs. Not good for any of us. Definately calling the Dr. on Monday.

Sammantha

01-10-2010, 10:36 AM

I always come on this site with what i have first.. I have confirmed EMG muscle weakness not due to a muscle disease or disorder of the peripheral system. I do have brisk reflexes, sustained clonus, hoffmans response and even brisk finger flexors now. That being said I am very emotional!!! The worst is when my son did something very bad and without thinking or even having the want to i slapped him in his face! I cant believe i am admitting that but i am. I cry when i am a little sad and i laugh at things i thought were funny when i was 10. When i was talking to a co worker who was sharing some of the personal things she went through, as i shared my story i was laughing and smirking the whole time because to me in actuality it is so beyond pitiful that it turns into irony. I used to work with children for years, it has been two years since i stopped. I could never go back because i am scared i could not control my actions. I was always praised at how calm and level headed i was and now i fly off the handle... I always here how EL affects laughter and crying, but what is affecting me also affects my anger. I get angry so fast, sometimes i have to run into the bathroom, lock the door and cry uncontrollably until the anger subsides. I KNOW in my head that this is not a normal response but my body seems to be a totally different entity... Sounds crazy huh.... I have read that some take Amitryptiline, my doc prescribed me that a long time ago, he said it was for my muscles... At the time i was having a crying fit?!? I could barely walk or get out of bed on that stuff, i felt like i had a ton of bricks waying me down. So unfortunately i have had to amp up my anxiety meds, they dont make me not emotional BUT they keep me from having the anger outbursts......

BethU

01-10-2010, 03:36 PM

At the beginning and the end of the airport tape, the woman is shoving and verbally assaulting people, which is what I did in my biggest breakdowns. I think very aggressive behavior is much scarier in a man than a woman ... we react differently seeing a woman out of control, with pity or scorn or amusement, whereas when a man is enraged, out of control and violent, we know we're in danger.

With EL, the emotions are as destructive, whether or not it's male or female, and they are not a continuim of "normal" emotional expressions. They are an abnormal symptom of the disease, not a normal reaction to the disease.

rocmg

01-11-2010, 01:34 PM

When my husband laughed uncontrollably during a serious talk about funeral arrangements, I also began laughing as I could see the humor. But it was still startling and disturbing at first.

there's so, so much information in this thread! thank you all for the stories... nice that everyone here seems to be a gifted story-teller.

now that i've read all the different experiences with EL... i can definitely relate to brooksea's experience.

for instance, the other night i was helping mum to bed and i went to get her a fresh nightdress. at the bottom of the drawer i found a nightdress that mum had kept belonging to her own mother, my granny.

i had remembered my gran wearing this nightdress when my mum was nursing her through her terminal cancer.

i was a little shocked at how much the two situations mirrored each other... here i was, helping my mum dress for bed in the same way she had helped my gran.

well, mum just started crying, so hard. i mean, rivers and rivers of tears and saliva. that just set me off, and we both sat there crying and crying, making all manner of weird and wonderful noises. then i made a weird nasal sound through my crying, and mum sat up and started to laugh. i was still crying and she was laughing at me. for a split-second i was embarrassed. then i started to laugh and we laughed together. it was just a horrible moment of clarity and the realization that our situation is as horrible as it looks -- that moment of helplessness we both found hilariously -- deliriously -- funny.

anyway, after a while the laughing stopped... and crying started again.

my brother came in to see what was wrong and mum and i began the whole crying/laughing thing again -- my brother lost his temper and walked out! he said he'd speak to us later when "you've both caught yourselves on."

it really was one of the most bizarre experiences of this ALS journey to date.

i think i have EL too... either that or i've just profoundly effected by what is going on with my PALS brain chemistry.

sigma35

01-12-2010, 08:57 AM

Thank goodness for this forum ! I have been having the same emotional bouts everyone is talking about here. I thought I was going nuts. My wife actually said to me that watching "chick flicks" with her has brought out my feminine side, and thats why I start to cry at the strangest times. We had a very bad argument the other nite, and I had to try and not laugh at the situation..it was very difficult. One time I had to yell at my son for something ( he's 15 ) and I burst into laughter. His reaction to me was that this issue could not be very serious if all I can do is laugh ! Crying is my biggest problem. I watch TV and anything slightly emotional I get all choked up. I will defiantly bring this up to my Doctor on my next visit ! Thank you all again for your incredible insight into this stupid disease.