Can You Hear Me?

[jimO]

Can You hear me ?
My mind is speaking loud and clear, can you hear me?
Yes I know the answer to your question, can you hear me?
I have a really funny joke, can you hear me?
Let me tell you how that works, can you hear me?
I know where that tool is, it's in the garage on the shelf 3rd from the top,behind the saw in the green box,can you hear me?
It's amazing as your physical voice disappears how much louder,smarter,funnier and absolutely frustrated that voice in your head gets.It never seems to be quiet, it's always knows the answer or a better way of doing things and usually wants to talk all night. Sometimes even thinks he's the smartest person in the room (usually when I'm alone) how on earth is everyone going to survive without me?
I've heard this disease described as being trapped, what a perfect description because feeling trapped is certainly present a lot.
I really have to count my blessings for the toys available to help us out to communicate with like computers and speech devices, because I for 1 wouldn't be so cheerful without them. Not saying whether I agree or disagree when pals throw in the towel but certainly understand why from a frustration point of view.
I'm not really making any point just sharing some feelings that maybe others maybe feeling or not and exercising my right or ability to still write. I'm sure other pals feel like this and maybe reading this some cals will understand why we seem grumpy sometimes
Can You hear me?

[DebbieD]

hi jim

even though i can still speak, i often don't because it's just too much trouble! so many little things about my day that i don't share with my husband anymore. maybe i should while i still can! he alone seems to always understand what i'm trying to say!

[Carol Deboer]

Hi Jim and Deb,

I think that you speak for the whole community that suffers from this als thing. I know Henry can still speak, very weakly, but he gets so frustrated (and tired ) from trying to get through to us. His mind is still so sharp too. Can "I" hear you? You bet I can. I can read your eyes, and know what you are feeling. Tired, uncomfortable, happy, sad or depressed. I can look at your mouth and see if you are smiling or frowning with frustration, or resting comfortably. I can look at your hands and see that you want something that is out of your reach. Can I hear you speak? Not from your mouth, but, still from you none the less. I can hear Henry's mind thinking and talking just by looking at him. And I nod in agreement with what he wants to say, but, nothing is said. I also, can get mad at him for something that he is thinking and wants to say, because, I simply know how my husband thinks. Yes, we are lucky to have all of our communication devices, because, we would be lost without them. It would be a very quiet place. I hear you loud and clear Jim. This als thing sucks!!!! I do not have to say more. Can you hear me?

Your dad called this morning, said he would like to take me to see the mattress. I will call him and set up a time that is good for us all. We have company this evening, and tommorrow a Xmas dinner. Too soon!! Anyway, hope this finds you okay, and hanging in there.

Stay Strong......

Love, Carol

[sisterofl]

Hi Jim,

So true...As a caregiver to my brother at times I get frustrated because with one look he thinks I should know exactly what he means. I know he is frustrated and yet I am frustrated as well because I don't know what he wants.

Once he wanted me to get something for him out of the blue and he was sitting at the computer I asked him to type the word as I couldn't guess what he wanted. Everything I picked up off the table where he was looking was the wrong thing. He refused to use the virtual keyboard...we finally had to let it go because I just couldn't guess. It would have been so simple to use such a great communication device. Eventhough he has no real use of his hands, he can manipulate the special joystick mouse he has and he does it all day...so why not type the word?

Sometimes he tries to speak (although it's impossible to understand...)and it's as if because he can clearly hear it in his head he thinks we should too. It's extremely frustrating, especially when he changes topic...you know we might be doing one thing and all of a sudden he wants something that's not related at all to what we are doing...and gets mad if we don't get it. aRRRRRggg! you're right Carol, this ALS thing sucks!!!!

I can only imagine how frustrating it is for him...with one look he wants us to guess immediately ...It makes me sad and angry because I feel totally powerless...I can't help him...

Anyways...

Thanks for listening

Gisele

[Theresa2004]

I think we hear you Jim and PALS will understand as will CALS's. You want to be grumpy and vent...go ahead, everyone will understand. Why do you think this forum exists? It is to vent, have fun, share your frustrations. Say it as you feel it, you will feel better getting it off your chest.
Debbie, I imagine you don't want to sound like a broken record with Dave, but share it with him. He can't help if he doesn't know, keep it positive but open. Since your health seems to be doing relatively well all things considered, take off like Al and Lee did, even for a weekend, leave ALS at the door and go have some fun.
Giselle, and the rest, from all the information I have read from this forum, one of the most difficult situations for PALS, is to have the cognitive functions without the motor skills. So the brain is operating, but the body isn't. And you have to guess what they are reaching for.
As Jim said they feel trapped. Carol, Lee, ( she is busy keeping Al out of a Cuban prison), Kim and the rest of the immediate CALS around can make suggestions to help out. Ask any one in the group who is having problems with the voice at their stage.
Carol, you know Henry so well, you can read him....and that I expect helps in the lines of communication. Not always I expect, but a great deal.
Love to all..this ALS sucks......as a sidebar, I heard that the US was going to spend an enormous sum of money for his inaugrual ball with all the trimmings. this is his second term..can we not have a small luncheon?..the most spent ever before...can he not put the countries money to better use? Research? Just floors me...

[me]

Thanks all for sharing. It helps to get to know everyone and to share our experiences. Yes, Theresa, the good 'ol US of A!!!!! Melissa

[holly]

Hi jim

i'm new to tHis and just read your posting. my Husband Has lost mucH of His speecH and i try very Hard to anticipate wHat He needs so tHat all He Has to do is look at me and i'll know wHat He needs or is trying to say. However, tHat is my fantasy. tHe reality is tHat i Have trouble understanding His speecH and tHougH i would like it to be otHerwise, i am forced to ask Him to repeat Himself or use tHe laptop speecH program. i don't tHink He likes to use it, He's a very creative and artistic person and i tHink tHe impersonality of tHe speecH program just underscores wHat tHis disease Has done to Him and His sociability.

gisele (sisterof) ecHoed wHat we Have gone tHrougH Here at Home many times, i understand Her frustration. we want to make tHings smootHer, easier for tHe ones we love, but it seems tHat we just frustrate and upset tHem.

all i can say is keep on trying, keep tHe Humour wHere you can

Holly

[jimO]

Dang-nab-it
no wonder i've been getting so many puzzling looks lately, usually when i get asked a dumb-ass question that requires a long winded or typed out answer i save my time, energy and frustration by simply giving a slight shoulder shrug as to say i don't know the answer. but it seems i don't have any shrug's left in these shoulders.my mind was telling me my shoulders were moving and they felt like they were moving but no and that's where the puzzling looks were for, waiting for a reply from me lol.
so it's time to adapt to change again and being thankful for movement i still have and make the best of the situation .
question is what do i program into my speech device for a reply now (i don't know the answer) ,(i know the answer but don't feel like answering you) or just maybe (stop asking me dumb-ass questions) alright i'll be nice about it lol .
well that's my rant for the day tc everyone

[Al]

Sometimes no reply is better jim. someone told me once long ago that it is better to say nothing and appear ignorant than open your mouth or in this case your speech writer and remove all doubt.

[lhart]

Hi everyone,
i'm glad we're talking about not talking. not being able to talk, for me, feels like i've gone from a participant to a spectator. now being a spectator isn't all bad. i'm tHe biggest Hockey fan tHere is, can't skate wortH a damn, never could, but i love to watcH. i guess tHe difference is tHat wHen i got pissed off at tHe canucks i could scream and yell and my dog would start barking, and tHe wife would run in tHe room and tHe daugHter would run out.......it felt like i was a participant. i'm really trying to find a way to participate, but its Hard. damn nHl, damn als!!!!
les

[lhart]

Hi everyone,
i'm glad we're talking about not talking. not being able to talk, for me, feels like i've gone from a participant to a spectator. now being a spectator isn't all bad. i'm tHe biggest Hockey fan tHere is, can't skate wortH a damn, never could, but i love to watcH. i guess tHe difference is tHat wHen i got pissed off at tHe canucks i could scream and yell and my dog would start barking, and tHe wife would run in tHe room and tHe daugHter would run out.......it felt like i was a participant. i'm really trying to find a way to participate, but its Hard. damn nHl, damn als!!!!
les

[Carol Deboer]

Hi guys,

i did a buncH of posting last weekend, However, tHey disappeared into tHin air. tHey were tHere, and tHen tHey weren't. don't know wHat Happened. tried to get on forum several times, could not. sometHing is Happening, However, i got on tHis morning not problem. ???? Hope tHis finds everyone well, surviving tHe cold winter days and nigHts. we Have our fireplace just a pumping out tHe Heat. we Have a woodburning fireplace so tHe smell and visuals are really nice. i am still not feeling too good yet, strep tHroat and i am sure a sinus infection or sometHing like tHat. spent tHe past week in bed or laying down most of tHe time, Had 6 days off, back to work last tHursday, However, sHould not Have gone back tHat soon. anyway, i Have to go to work now, Hello to all ted, kim, jane, elaine, karen, al, tHeresa, jim, debbie, mike, will "talk" soon. stay strong, stay warm!!!!!

love, carol

[Theresa2004]

Carol, it is not your imagination, i think some of the posts have disappeared, it seemed unusually quiet all week. i had trouble getting on several times again.
hope you are feeling a bit better. it is time for a cuban beach, al and lee can be our tour guides, after they got off their cruise....

[TBear]

Hi guys:
tHe only question i Have is wHy liz and al don't Have tHeir H's capitolized... is it a brampton tHing?
les, i tHink tHat i saw tHat you are from surrey as well... do you know Holly? perHaps you sHould tape tHe rants wHile you can (or Have tHem taped)and play tHem back as required!
carol, i've been suffering from tHe same Head cold and sore tHroat for about a week now... trying desparately for it not to migrate to my cHest. i Hope you've managed to save yours! Have you Heard from melissa?
cHeers

t

[Theresa2004]

Hi tbear..it must be sometHing in tHe air around Here, but don't dismay, some times my 'H' 's do Hit tHe HigH note. wHen i am posting it is fine, but wHen i look back, tHe capitals are tHere.
is tHis forum sending viruses otHer tHen trojan Horses?...my tHroat and ears are killing me. sipping on some 'sleepy time tea' to Heal and sleep.
i was wondering tHe same , wHere is melissa?
nigHt to all...lets Hope we feel better ...

[Jane]

Hello everyone,

i too have had trouble getting into the forum, and also some posts have disappeared. must be gremlins!

carol i wonder is you had been in the red bikini again, that would definitely give you a chest cold, and raise henry"s blood pressure!

hope you all regain you health, spring is coming, we only have to wait a few more weeks.

take care all love jane

[Jane]

Something is really strange all my capital letters disappeared except the h. oh well we can read it all anyway. love jane

[Al]

Maybe someone up there just likes us better. on a more serious note i have to go to see a dr. goldstein at west park tomorrow. they said a chest x-ray,lung function tests and blood would be done. also this place does have you stay over for a few days to get you regulated on the bipap. hope i can get it done before the first or a lot of plans will be up in smoke and a bunch of people will be mad at me.
one other interesting note. on sunday i was putting air in a tire at the garage and when i went to get up i think my knee gave out or the muscle gave out. something crapped out and down i went. didn't hurt anything except my pride and got a little dirty. no fun. i hope it is just an isolated incident and not the beginning of the end. take care everyone and stay warm.

[lhart]

Good morning,
hey tbear, do i know holly...eye bye she's me wife. to be formal: les & holly hart, three kids 16,19&21 yrs, 5 years with this als thing. hope everyone is happy today, don't let the weather get you down.
les

[Elaine]

Hi everyone,
i also tried to get to tHe forum and Had alot of problems witH posting. tHey all disapeared.tHere must be sometHing wrong witH tHe site.
maybe tHere're Hidding from tHis bitter cold. ......
al must be Having problems too , He usually posts everyday.don't give up guys keep posting, one day Hopefully we'll be back to normal.
tHe question now is "can you see it? " or for How long tHe posting will remain? Ha Ha..... david is probably working very Hard to get tHe site back to normal.
let's all make a posting and see if tHey will all stay.
keep warm, especially today wHen it's so bitter cold outside ,lol elaine

[Carol Deboer]

Morning guys,

glad to see that i was not alone having problems posting, and keeping them posted. glad to see that i am not alone with this damn strep throat and cold and sinus thing. it knocks the shit out of ya !!! i will call melissa myself and see where she is and what shes up to and tell her to post, we all miss her. talk to you all later tonight after work, gotta fly. oops, i mean run, only ted and al can "fly". ha..

love ya... carol

[Elaine]

Didn't see your post al until i posted mine.how come you Didn't mention sunday dinner? well since you mentioned smoke i will tell you guys all what happened .
we we invited for dinner at al & lee's place on sunday.well, we were in for a quite surprise.al showed us all how to elimate excess, excess smoke coming from the oven,he was jumping up and down on the chairs to open all the windows and hauling a very big fan to blow the smoke outside.
i think al just wanted to show us that he really was a fireman. lee remained calm through out the whole demonstration.
al ,i wouldn't worry too much about your legs for the time being ,you showed a very quick response to a situation that required fast thinking and very very fast legs.i don't think i could jump like that.....in fact i know i couldn't......ha. ha.
all kidding aside the evening was a success nothing got burn't, just the pan.
the food was delicious ,your home made wine was the best i've tasted, and
very, very stimulating conversations through out the evening , who could ask for more , a dinner and show all in one shot.....well, maybe a video....
the gang would have loved to see you in action.....right guys?
al , remember to stay positive........love to you and lee.
lol elaine



stay positive

[Carol Deboer]

Hey al, how are you doin? you said your knee gave out on sunday? i think, personally, and have gone through this, and every phase of this als thing, i think that it is just an isolated thing not related to tHe als. you have not had als for very long, your legs are strong, and your arms are tHe things that are being affected first, right? this is tHe same way Henry started out. his legs were so strong until 5-6 years into tHe als. i think you have a lot of years on tHe treadmill, so to speak, until you have to worry about your legs. you would notice more weakness, and twitching, and drop foot happening if your legs were getting weaker. my thoughts only, and only to be on tHe positive side, i think you are doing tremendously well, and have a ratHer slower moving als, again like Henry. keep those legs moving though. Henry did stationary biking, and swam everyday until a year and a half ago. use it or lose it tHey say. Hey has anyone Heard from fisHer? He must be bundled up tighter than a stack of day old newspapers. brrrrrrrrrrr......... grand bend snowfest is coming up, He must be practising his ice sculptures. ...... wine bottles !!!!
hope your okay fish, drop in to say hi. take care all, stay warrrrrrmmmm....... love to all,

carol

[Theresa2004]

Hi, al, you were the dinner entertainment were you? that is Hilarious, surpised you didn't bring out the fire hose? was the firetruck wHich flew by me sunday on sandalwood heading to your house? glad everyone was alright and the only damage was to the pan.
elaine, look out when he starts to bbq..now that will be an event....i'll be able to see the flames from my back deck. just kidding al...gotta keep up the humour.
it sounds as if the leg was an isolated event unless you were having a pre drink pre drink before guests.. and as carol says, keep them moving.

henry sounds as if he has maintained a lot of strength along the way, and i suppose exercise is good. i know my friends doctor told Him a long time ago, if you feel up to it, do it, witHin reason of course.

carol, have you heard from melissa? what is going on down there? any news from the medical teams for them?

tim's helper also hasn't been around?

les, i didn't realise you were holly's husband...keep posting both of you...al will entertain you with His cooking....he's inviting everyone for the july 1 holiday, bring your own steaks and fat bastard vino, complete with fireworks and the local fire department.....al, you know i am kidding.. had a bit of a punchy day today...and i still tHink al, i may need your firemans hose to cool me down tHis time...a tad hot under the colar with stubbourn men...well, one stubbourn man..... now in total defense of you, my smoke alarm goes off daily when i cook anytHing more then toast..the kids stand under it fanning it with a dish towel.

hope you do get away on tHis trip...but they have internet even on sHips...you will have to tell us how it is going.....

[Carol Deboer]

Hi tHeresa,

Haven't Heard from melissa lately, i'm Hoping tHat tHis is a good sign. i sHould drop Her a e-mail via Her Home address, yes, i will do tHat. i Have been wondering about Her myself. as for kim, i talked to Her tonigHt. sHe Has a lot of stuff going on in Her personal life, and sHe needs to work it out. sHe is doing okay tHougH. Her friend tim, is going downHill fast sHe says, so sHe is trying to Help Him out along tHe way too. my goodness, is tHis all we Have to talk about? al, and His big Hose? just migHt Have to drive down and cHeck it out for myself. Holly and les, keep on figHting. tHe stronger you are and your will, tHe better you will see tHis als tHing tHrougH. it is a bugger to tend witH, but witH tHe Help of good family and friends you will be okay.. you say les Has Had als for 5 years? He must be strong and a figHter. keep it up. anyway, must go to bed and get my beauty sleep!!! nigHt all zzzzzzzzz

love, carol

[Al]

Why thank you elaine. i wasn't going to mention the shrimp fiasco. but it goes to show you, you never forget the drills.no hose needed. smoke no flames. i woke up on mon. to nausea and a headache and thought i was coming down with something. really felt crappy and stayed in bed till almost 3. felt better once up and checked the forum and nothing was going on much so didn't have much to say back.

so les you filled us in but Where are you from? you said you were a canucks fan so out west would be a guess. holly's profile says surrey so is that it?

did the arterial blood gas thing today,didn't think we had arteries that deep in your wrist. pulmonary function test and chest x-ray. through the help of some very very kind and caring people at west park rehab. ( no not alcohol and drug rehab. wise guys) i am going in on thurs. for my bipap. they do it a little different here. i am admited and will stay probably till sat. i can go home then and come back on sun. night for a few more days. they want to be absolutely sure the machine is working and i am comfortable with it. the only snag might be getting my own bipap before we go away. they didn't really want to give me their loaner for 4-6 weeks. guess i can't blame them. i can't say enouigh about how great these people are.

the doctor there did a strength assesment of my Whole body and thinks my hands are the worst. they are. he says my legs appear to be quite strong still so maybe sunday was just a fluke. i'll let you all know What room i'm in so you can all come visit. lol take care.

[Elaine]

Hi everyone,good to see tHe posts are starting to come,only Hope we don't Have tHem disapear on us again.

carol, never mind about al's Hose ask Him about His Hot pickle...even better...

al ,sorry to Hear you were under tHe weatHer tHe next day, all tHat worry about your leg incident didn't Help matters .glad to Hear you're feeling better.west park is very nice, Had to visit a couple of friends tHere . very supportive nurses and doctors and tHey really care.

tHeresa ,wHat's been Happening witH your friend ? Has He been talking or
still being quiet?

gotta go to bed .lol elaine

[me]

Hey everyone - sorry to keep you wondering for so long! i gave up on tHe site for awhile wHen it wasn't working. finally i came back but haven't had much computer time lately for posting. i have been giving a quick read through each morning. i'll try and post an update later today. have a great day all, stay warm! melissa

[lhart]

Hey gang,
holly and i live in surrey b.c., i first went to a doctor in jan 2000, i was having cramping in my right hand. today my right hand is pretty useless, not much strength in my right arm. my left hand is starting to go. my neck is very weak and i've been trying to find a decent neck brace without much luck. i can't talk and have a feeding tube. i've been sleeping with a bipap for about three months now. my legs are still pretty good although my neck keeps me from doing a lot of walking. i lost a lot of weight this year, two bad bouts of kidney stones didn't Help. i'm relying more on tHe feeding tube and ensure now and i'm startng to put tHe weight back on. i'm still working and driving...taking it day by day. if anyone has advice on neck braces, i could sure use it. al, tHe bipap has been great for me. i sleep great and have a lot more energy during He day. take care everyone
les

[TBear]

Hi guys:
melissa... we've missed you, but you've missed tHe blank part of tHe operation wHen tHe site went into tHe dumper so now you're back in tHe new and revamped old site!
les, if you're driving... and aren't talking... How do you explain speeding tickets to tHe mounties? better yet, How do you defend yourself from back seat drivers?
Hope all you easterners are enjoying tHe snow and will enjoy tHe temperature plunge tonigHt! to tHe left coasters... enjoy tHe rain!

cHeers

t.

[me]

Hey, i've missed "the gang". sounds like we're all trickling back in here! al - i guess you had a good time in cuba? wish you were there now? it sure is cold enough here.

theresa - it's good that you're trying to ride this thing out a bit. i always say, things will work out the way tHey should.

carol - so sorry you've been sick. maybe you're body is giving you a chance to rest....kind of a blessing in disguise!?!

to the rest of you - hello.

there is nothing really new to report. at lest not physically, about nathan. mostly the news is about me, emotionally. 2 good things happened during the weeks around the holiday's. one is that we got into a good discussion about everything and the long and short of it is this...he is not going to budge, it is his problem, and when he's ready to talk about it or deal with it, he'll let me know. this made me soooo hurt & angry. i'm sure i don't need to give details of my specific thoughts & feelings but i just didn't know what i was going to do. i finally was able to settle within myself, at this point, there is just nothing i can do. worrying, being angry, hurt, etc. was not going to change things so it was a waste of time. we are a great couple, i love him and he loves me, so why let those emotions ruin it.

the second thing that happened is that it was recommended to me that i read a book about being spouse of someone with a chronic illness. at first i thought "no" because, after all, we don't know if he has one. then i realized, regardless of what is going on, it is as if there is a chronic illness. his symptoms frequently interfere with at least one of our lives on a regular basis. so, i figured it couldn't hurt.

the book was fantastic. it was by a lady whose husband had m.s. for 12 years and she interviewed hundreds of other spouses with illnesses ranging from asthma, diabetes, m.s., als, etc. tHey all talked about the many ways of dealing with the emotions and denial. one pointer was that especially down the road, some denial is not all bad and that can be part of what allows you to continue living as a normal a life as possible. i had to be realistic and say, yeah, at least right now, we can keep moving forward. the other pointer i got out of it is that it is normal to have all sorts of thoughts and emotions. this does not make you a bad person. it's what you do with those thoughts & emotions that count. mainly, it was just incredible how i felt i related to the spouses almost from the first pages. i didn't feel so alone, guilty, etc.

from all that, i've really been able to let this thing go and not to worry about it so much. that's also part of the reason i haven't been here as much. by visiting this chat room daily (sometimes more) just helped me to keep dwelling on my feelings. but, you all are so great and i definitely don't want to be a "fairweather friend" and i plan on sticking around. i will keep you posted as there is news and until then, i'll be your friend from michigan that cares a ton about you all. i will keep abreast of the cause and help when i can.

well, i've written a book here i think, i hope the post goes through!!!
melissa

[Theresa2004]

i posted to the webmaster to see if we can save our postings in draft form to return to them later if we are interupted. unless there is a spot here i have missed.

al, sounds as if you are having a real fun time lately, but we all hope they get you in gear for your cruisin'. just don't fall overboard after too much wine. but it was a funny story, thanks elaine for sharing it. i am not sure i want to be the one to ask about the "hot pickle", i'll leave that one for carol. elaine i will mention my friend in a minute, kinda link it up with melissas comments.

melissa, you should tell us the title of the book. it sounds incredible. i understand completely how hurt you felt, trying to be there, and he won't let you in to do so. the anger, frustration and in some ways betrayal tear us apart inside. the remarks saying that some denial is positive, i agree with that. i would imagine many of the forum will also. if you are constantly dwelling on it, it is always there, but if you can seperate yourself from it, even if it is only for a few minutes, it a few minutes of peace you may not have at all. how you phrased that area was perfect. there is nothing wrong with emotions. what scares me is what happens if they become too buried. it has been the denial and lock out which has hurt me the most, as i have said before. and no matter what i say, or how i say it, the same road block comes up. yes, elaine, i have heard from him, and in some of his messages he was looking at various activities which would keep him busy for years. activities which may not be appropriate for anyone with this disease, i say that for saftey reasons, balance, weakness etc. so i am wondering from what melissas book gave her, was you are trying to live normally, and if you bring down the wall to say you need help, support, you admit you are ill, from there you have to confront things which perhaps you don't want to. i am no psychiatrist, i am basing this on how the relationship has been strained as a result of poor communication, and denial.the problem is not with me, it is with him. will he continue to move forward, then when it all builds to the breaking point, will he ask for help? as melissa said, things will work out as they should.

maybe members of the forum would be willing to discuss that area, their experiences with denial, and how they either came out of it, or had help from loved ones in the process.

[me]

Any thoughts on theresa's question about denial? i'd be interested to know what the others think since we have people at all different points on the timeline here. have people found it a help/coping necessity or just a harm along the way? Any explosions down the road??? maybe it's in finding a balAnce. maybe denial isn't the right word exactly. for me, it seems more of An intentional ignoring of things And turning my thoughts And actions to other things (like cooking, reading, snuggling, etc). it's still there in the back of my mind, but not all consuming. -melissa-

[Carol Deboer]

Hi girls,

denial....an assertion tHat sometHing may not be true. denial is an emotion tHat lets us believe tHat reality is not really affecting us. unfortunately, denial does fade, and reality does kick in. tHankfully, denial can take tHe edge off of our frigHt and fear of tHe unkown. until we educate ourselves to our "destiny" tHis emotion softens tHe blow of tHe HarsH reality. we were in denial for tHe first year of Henry dx. However, tHe ailment marcHed on in spite of our doubt. we learned very early on, tHat tHis denial tHing is in fact "HealtHy", and i really do mean it. you Have to come to terms witH lots of cHanges in your life, wHetHer you Have a cHild, marry, divorce, buy a House, etc. denial does turn into acceptance at some point. wHen, i don't know, but it does. i do not tHink tHat we were "angry and in denial" we were just stunned tHat tHis could Happen to us. we trusted we otHer, loved eacH otHer, and just knew tHat we Had to ride tHis wave togetHer. so, wHen did out denial end? it Hasn't. i still am in denial tHat Henry could die at any minute. i know He will or could, but, my will makes me deny it. i want Him to live. However, tHe reality is , tHis cHapter in our lives will end. i won't deny tHat i will be angry and sad tHat tHis als tHing got tHe best of us, but, also, i won't deny tHat Henry was tHe best damn tHing tHat ever Happened to me. sooooo... its all relative i guess. denial, reality, acceptance, denial, peace..... just my tHougHts. i Hope tHat everyone can cope witH tHeir situation. it is not an easy tHing, However, laying low for awHile like we did at first , let us catcH our breatHs and decide tHat we would try to be in control of our destiny. i tHink we Have done a damn good job, i am proud of my kids, i am proud of Henry, for He Has taken tHis adversity and dealt witH it witH dignity and understanding, i am proud of our dear friends, too many to mention, but most of all i am proud of myself, because not matter How tired i am, How grumpy i am, i know wHen i lay my Head down beside my Henrys eacH nigHt, i Have no regrets. so, my dears , denial is just anotHer pHase of life, wHetHer it is in a good or bad way, is wHat you make of it.

Hang in tHere girs, it does get lots better..

love yas.... carol

[Theresa2004]

Hi. some very well composed points made carol. in conjunction with what melissa said also, i suppose denial in some form can be a healthy tHing to assist in coping with what lays ahead of anyone connected to tHis or any other horrific disease. but reality does set in, in my case, perhaps that is why i am somewhat on the outside looking in. the reality is we just may not be able to ride the storm witHin time constraints. however, they are making strides in tHis, and i have to remain positive that even the smallest progress can buy time for everyone. i am angry, angry that tHis disease has taken away a future barely begun. so i expect that we all have to learn to cope with the anger and dispare, and do what we can in any way to keep the loved one smiling. i am not about to give up yet.he still remains the best tHing that ever happened to me. the denial helps us not be hurt every second, like a protective liner inside our hearts.

[lhart]

Hi gang,
tHere are times, like cHristmas morning, wHen i say to myself "wHat would i be doing rigHt now if i didn't Have als" well i'd be doing tHis. or during tHe week wHen i'm sitting at tHe table reading tHe sunday paper, or watcHing tHe news at nigHt. i pick moments of tHe day tHat Haven't cHanged. tHey may be small, or not as comfortable but tHey Haven't all cHanged. tHis is my version of denial. tHe otHer nigHt my daugHter was in a dance performance at scHool, and i was tHere front and center and as i watcHed Her, i didn't Have als. so for me, denial, is allowing myself to ignore it once in a wHile. don't worry tHat reality slap is just around tHe corner but you get used to it and you deal witH it.
les

[Al]

Has anyone gone to the als society website and seen the new commercials for als. pretty good stuff. right up the alley of wHat you are saying les.

[karenmorrison]

i sometimes think that i am in denial as well...richard and i are enjoying our new love and maybe we are clouding over the reality. sometimes i do look at him and wonder how long will i be able to watch him sleeping, how long will i feel his warmth when i wake up each morning, when will the enjoyment of the laughter we share stop. we spend so much time hugging, sharing and laughing...oh there is anger, mostly on my part..i am a person that just goes when it is time to go, and with richard being so slow, i find i am extremely impatient at times...and i get angry with him...he clams up...and so goes the story....but we always make up....:)) that is the fun part....we are getting no support from our families...my mother is worried i will be worn to death as a caregiver as she was with my dad...not sure why the rest are so negative. richard and i have decided "the hell" with what others say! we know we love each other. i have been with so called "whole" men in my past, and nobody gives me the total feeling of being loved as he does. he has gone home for a week to get his things packed as he officially moves in on feb 5...and i dropped him off at the train, and missed him before i even left the station. we like the rest have challenges...but who said life was to be easy...i just know i feel content and totally loved, and will enjoy each and every second with this man.....

[Theresa2004]

Hi to all.
i can't believe How great a response from tHe subject of denial. tHis is wHat tHe site is about, support, opinions, experience.

debbie, i suppose a motHer is always a motHer, and perHaps tHe remainder of tHe family is scared for you. but you Have to do wHat you need to do, and in tHe end, no matter How long you Have, or don't, you love Him, and tHe feeling tHat you were tHere for Him will be witH you a lifetime. as tbear said at one point, some of inHerit tHis, some of us deal witH it naturally, giving us tHe cHoice. you do wHat you can, and love eacH otHer, tHere is notHing sweeter. i am like you, get up and go, so i can understand you impatience some days, but as time goes on, you will adapt to a slower routine. it is easy to be angry, However, tHis is not His fault. we all know tHat, but sometimes we forget.

les, tHank you also for your tHougHts and feelings. tHe more i Have read tHese replies and tHe more i Have generically spoken to my friend tHe last few days, it is giving me a more positive outlook, witH positive feedback encouraging Him to progress witH projects on tHe go, and avoid any negative feedback. maybe as les says, tHere are times you are not an als victim, wHicH aids in tHe coping mecHanisms, but also tHe enjoyment of life. it Has given me a different perspective as to my approacH.

[Theresa2004]

Ooppsss...i wrote deb...i meant karen.....i had just hung up the phone with my girlfriend debbie....sorry......................

[Elaine]

Hi everyone, you talk about denial,well first tHere's sHock.tHat terrible feeling you Have in tHe pit of your stomacH after tHe doctor tells you, you Have als. for me tHat feeling is always tHere. denial lasted a sHort time, i Had too many symptons to ignore it for to long.i really don't tHink anyone can Have denial for too long. but tHat's my own opinion.anger oH yes tHere's anger.i said wHy me ? wHat did i ever do to deserve tHis, i was mad for a long wHile
tonigHt was very emotional for me,i finally told everyone at work tHat i Had als.talk about a support team.... tHey were all crying .i tHougHt i was being so brave and Here tHey all broke down.i Hope tHey get it out of tHere system i couldn't take anotHer nigHt like tHis.
als cHanges so many tHings many tHings in your life,it's really never tHe same after tHat day in tHe doctors' office.
like sleeping ,i can't sleep tHrougH tHe wHole nigHt,two Hours top and tHen i wake up,and my mind is going wild never stops.How about you guys How do you sleep? good ?or bad?
no wonder we Have no energy we never sleep tHe nigHt tHrougH.
enougH of my raving, i'm going in bed to get my two Hours,i'm so tired.
nigHt all ! lol elaine

[me]

Elaine - sleep, i know i struggle with it. mostly because my mind won't shut off.

theresa - glad to hear you're feeling a bit more positive. it does make the same more worthwile when you're looking at the bright side. i finally remembered to check the name of the book i had mentioned. i definitely recommend it to anyone....the only thing better is carol!!!! :)
"surviving your spouse's chronic illness" by chris mcgonigle, ph.d

karen - isn't love a wonderful thing. god bless you for being willing to stand by this man you love.

i'm doing fairly well. i'm ready for winter to be over but that's nothing new. we had a "beach party" at work yesterday. we played beach boys music, ate hot dogs and potatoe salad and decorated with summer things. it was a good mid-winter break. melissa

[TBear]

... now that's what i call denial! beach boys and summer stuff in -30 degree (c) winter is real denial! what can be next??? carol in her red, stringed bikini? looking forward to the .jpeg!

t.