NEWS UPDATE ON HENRY

[Carol Deboer]

My dear friends,


i do not have very good news to report today. at 3:30 yesterday afternoon, we had to call 911 to take henry to the hospital. he went downhill very quickly over the past two days prior, and his breathing was shallow ,yet loud, and he lost all control of his body. we sat in the er for about 8 hours, while they tested and drugged hiM up. he has double pneMonia couple with infection. he is in very grave condition.
they transfered hiM this afternoon to pallative care. he seeMs to be resting better with the drugs and antibiotics they are giving hiM aggressively. i just caMe hoMe now to shower and go back up. i was at the hospital for 22 hours straight, tired, hungry and just plain exhausted seeM just about right for words. we are hoping that he can turn this corner. please pray for our faMily and for henry and i.
we will accept gods will and accept his Mercy. i hope that everyone else is doing alright, and i will keep you posted on our status.

stay strong, god bless

love, carol

[lhart]

Carol & henry,
we're here for you, when you need us.
les & holly

[Theresa2004]

Carol, we are all here, and the rest of the forum will fall into place when they read this.

prayers are with you all.

[Timshelper]

To carol, henry and her family,
Today i Think we are all feeling saddness and a biT of inTernal conflicT. iTs Time To Take a deep breaTh close our eyes and say a prayer for The deboer family.
dear holy spiriT:
in This momenT i cannoT move. i do noT know whaT To do. please move Through me, Taking me in The direcTion ThaT will serve your will for me. fill my mind wiTh The ThoughTs ThaT will lead me in ThaT direcTion. shuT my mouTh. if i have To speak, speak Through me. shuT my eyes. if i need To see anyThing, show me where To look. close my ears. if There is someThing i musT hear, please whisper iT inTo my hearT in a way ThaT i can undersTand. if i sTop, genTly push me beyond fear and doubT. i am TrusTing you so ThaT i may Take The mosT appropriaTe acTion for my highesT and greaTesT good. Thank you. and so iT is.
amen
love kim
als abouT loving someone

[Elaine]

Hang in there sweetie, we're all praying for you and henry.
keep strong and may god be with you both. all our love ,hugs and kisses elaine and maurice

[Jane]

Carol, i will keep you, henry and your family in my prayers, and i know god will give each of your strenght and comfort in the hours to come.
love jane

[holly]

Carol and henry

our thoughts and prayers are with you. my heart goes out to you and your husband.

holly

[Al]

Lee and i think of you every day. our hearts go out to you and your family. take care.

[me]

Carol - again i wish i could be there and give you a hug. but, it sounds like you have a good support system around you and for that i am thankful. i will be praying for you and your family to feel god's presence and peace as you spend time in the hospital and go through the next few days. i will pray for henry that he is comfortable and also feeling god's presence. i thank god for you and your wisdom to us all. i don't know how we all would have made it this far without you. -melissa-

dear god, we leave this family in your hands. as much as we might ache to do something, we know our days are out of our hands. please let Carol, henry and the whole family just know that you are there holding their hands and comfort them. god, you know all of our hearts, please answer our prayers.

[TBear]

... as always, my thoughts and prayers are with you... hang on...we're all here!

t.

[fisher]

Dear carol we thinking of you and henry during your troubled time

jim and linda

god bless you both
stay strong carol

[PALS Mike]

Group hug!!!

take care, stay strong, we're here for you...

xxooxxoo

[Al]

Ok guys: what the heck is gOing On nOw with the site?

[sisterofl]

Carol,

henry and you are in my prayers.

gisèle

[Theresa2004]

What the heck is going on here?

i like mike's idea...group hug....if carol even has the opportunity to get on, she'll need a translator..or we will...

[holly]

Hi, i tried to get on the site yesterday to see how carol and henry were doing and i got redirected to the www.turkwarrior.org site. apparently the forum site was hacked? i sent an email to the web designer to ask them to fix it (i really didn't know who to contact)

les told me that tHis happens every couple of weeks. my son says some fanatics regular look for sites that talk about 'forbidden' or 'taboo' subjects that they believe are against god or allah or some private religion and then hack their sites. you know, i'm beginning to tHink tHis forum is a nest of subversives with alcoholic tendencies.....i kind of like it

holly

[Al]

Sure and that subversive alcoholic stuff is coming from the pot capital of canada. everyone knows you guys are always in a purple haze as they used to say.

[Elaine]

This site is really acting up.

i guess we all like to have a drink now and then,why not!!!!
i really like to cook with wine and beer .everyThing comes out much more tender and tastier. some of us like to have a little drink just to relax.
i Think i will go and relax .ha, ha and wait for dinner.
take care and keep strong . elaine

[Theresa2004]

i wish whoever is responsible for this, if there is someone reaking havoc here, they would find something else to amuse themselves with.

my god, you would think every one is a bunch of raving alcholics....but hey, i am prone to a rum every now and then..enjoy it....have fun..

i am worried about carol, i hope we hear something soon...she will wonder what the hell happened while she has been with henry......

[Timshelper]

Wow web man this is messed up all we need now are the stripes and we'd all be americans. i think if carol is feeling all ours hugs she is being smothered , smotherend in love and strength and thats what she needs.
from what i can see the group hug comes from as far as alberta anyone out there from bc? then weve got the whole country covered. carol everything that i have that protects me and is good in me is coming your way because i dont need it. i think i know the problem with the forum carol is gone and the everything has just gone to shit, so if thats the problem big deal the forum has decided to send stars carols way.
love you my dear freind
kim
henry you are surrounded by universal love
als about loving someone

[Carol Deboer]

Hi guys,

tHank you for your prayers and continuing support as we go tHrougH tHis difficult time. i just came Home and Have been doing some reading on tHe forum. again, tHank you. botH Henry and i feel your love and concern and we are so blessed to Have friends like all of you. even tHougH most of us Have not met face to face, i feel tHat i Have known you all a lifetime. tHat witHin itself is so comforting. well, Henry is still figHting tHe pnemonia. He is still on tHe antibiotics and lots of pain meds. He is more alert and today did not talk too bad. He is so weak and pale. He is afraid to go to sleep, so He is really tired most of tHe day. i am tHere from about 10 in tHe morning to 11 at nigHt, so i am exHausted too. we are still Hoping He can turn tHe corner, tHe doctor is coming in tommorrow so we will know more about His status tHen. His sister flew in from singapore today, and He was really Happy to see Her. it was really emotional as well. Henry says tHank you to all of you for your prayers and love sent His way. i told Him about tHe support you are giving us and He was really toucHed. i really do not Have a lot to report, He still about tHe same and i pray eacH nigHt tHat tHe next day will be better for Him. jim oliver, wHo also Has als, stopped by to say Hello tonigHt. it was a nice visit for botH Henry and Him. anyway, i am really tired, so i will venture off to bed and Hope tHat i will be able to sleep tonigHt. again, tHank you from tHe bottom of my Heart, you guys are tHe best. love to all. stay strong, god bless us all.

love, carol

[holly]

Hey timsHelper (kim?)

yup, tHere are a few of us out Here in bc. my husband is les hart and i'm holly hart. les has als.

you can sure get a good feeling tapping into this forum. i know you guys will be tHere wHen/if i need it.

holly

[Al]

Hey it looks like we're back to sort of normal text. i'll keep cHecking in as i'm leaving tues. for florida for 4-6 weeks. take care carol. we are still thinking of you and Henry.

[lacey]

You have offered so many people on this forum so much support. may the lord be with You now as You struggle with the newest difficulties You are facing. You are obviously a very strong lady and and are surrounded by terrific people. we will all pray for You!!

[Theresa2004]

Hi, i was wondering if any one has heard from carol over the last couple of days.

i was at our local lcbo earlier, and noticed at the cash, the plastic containers to contribute to various causes. it was for als, had to give my head a shake. first time ever i have seen them before.

carol, keep in touch.

[Theresa2004]

Hi, i was wondering if any one has heard from carol over the last couple of days.

i was at our local lcbo earlier, and noticed at the cash, the plastic containers to contribute to various causes. it was for als, had to give my head a shake. first time ever i have seen them before.

carol, keep in touch.

[lacey]

i was wondering about carol as well. i must say i have enjjoyed reading her posts as she is so supportive and kind and articulate. i hope she is coping okay. i am very new to this site but already feel as if i am getting to know some people. i remember all of the rush trips to the hospital before we lost mom so i can only pray for carol and henry

[Theresa2004]

i agree lacy, i am more then worried, however, where the heck is everyone else?
did everyone crawl into the ground hog hole waiting for spring to arrive?
has anyone else in ontario noticed the fund raising at their lcbo's

[Timshelper]

Dear theresa and lacey,
i think carol is so tired when she gets home she doesnt have time to write anything down. as long as she is looking after herself and her Dear henry thats all she can do now. your right lacey carol has been an inspiration to many of us and when shes not on the forum she is missed but this is her time now and she would want us to keep it going. carol knew that the day would come when henrys illness would take over the both of them and that he would be also be in the hands of god but she wouldnt want us to stop talking on the forum, she knows we are all praying for the family and now we go on with our lifes because we still have them. so theresa i would like you to write me at spiritually1@msn.com i believe we have some things we can talk about and maybe relate and maybe i can help you a little bit with your problem. i would discuss it on the forum but it would take forever i'm sure there wouldn't be enough memory. if i have this right you know a man who has als that you were once involved with but he doesnt want anything to do with you now since the illness? if this is right then i've got the right person and we were going to talk before but but then i couldn't get onto the forum. i will be anxiously waiting to hear from you.
als about loving someone
kim
gods speed carol i love ya

[holly]

Hi,

les and i aren't from ontario so i don't know what icbo is. there is a walk, roll, wheel for als 5km thing happening here. we got a form in the mail so i'll do it. there is a pledge form to get people signed up for if you do it, so i'll make the rounds at work and through relatives (though most of les' relatives give wholeheartedly to the als society anyways).

we just got back from a visit to the als team here in vancouver and the respirologist as well. les asked the respirologist 'how long' before he has to go to some type of invasive (read 'trach' tube) method for breathing.....the doc said 6 - 9 months. i used to ask les why he didn't ask the docs more questions, he said he wasn't sure he wanted to know the answers. i'm behind him 100 percent on that one now. he's only 38, he was in his prime. now we are looking at machines and necka dn back braces and all kinds of stuff just so he can $%#^#%^$^&$ breathe and get nourishment...this wasn't supposed to happen!!!!!!!

sorry...... he's resting and i'm crying and it's been a crappy day. it made me think of how carol and henry are doing......anybody know anything? i'll check back before bed (it's 6 p.m. here now), cause i have to do the bills and gribbly stuff (and no rum in the house, dam).

holly

[Timshelper]

Dear holly,
i'm sorry to hear you are so upset tonight.als has one thing common for everybody its very good at making people get upset and thats because we never ever get straight forward answers or the terminology is like gobbledy gook and the machines or the apparatuses the dr's mention are something you never thought of and sure thought you would never use. i would like to know when les was diagnosed with als. my freind tim was 38 when they finally realized what was wrong with him too and you r right at that age they are in the prime of their lives and it seems to me that it always happens to really great people, go figure.tim is 40 now and he can't use his hands and he rolls around in his chair using his feet that will soon be finished and he will be bedridden or in a chair that someone will have to push. he can still talk but is very hard to understand and of course he is always choking. he was getting dehydrated because he couldnt lift a glass of water to his mouth so they have some kind of contaption hooked up to a door that he can put his mouth around and suck on. he's is suppose to drink the whole bag but cant get through that either because the muscles in his mouth have deteriorated in his mouth so badly. this man still lives on his own can you believe it he has home care come in 3 times a day to feed him which takes about 2 &1/2 hours and wash his hair or bathe him. he is staying independant until what and this is where i dont understand this disesase and the way some people handle it. les has you he always did and he always will and it is going to be difficult but for these people on their own where do they draw the line. tim has many friends but as the disease progresses many of them drop off as flies because they say they can't bear to see him that way. waht kind of crap response is that? i have a very difficult decision to make i told him he could come live with me but he'd rather i live with him. he doesn't want to leave his house i understand this part but i am married and its been rocky but we are trying to turn it around. i love 2 men 1 is my husband and 1 is my Dearest freind who is dying. unfortunately for me my life has to go on where tim knows where his is going and 3 months ago i would of moved into his place in a flash but my i kept stalling my life till i couldn't anymore and now i have this conflict.no one else wants yo move in which means he proably will have to go into a home which will destroy him and proably put me in a guilt trip for the rest of my life but do i give up on my marriage?i have been researching and checking things out for tim since day one and he trusts me and thats why he wants me at his side. i work in the medical field and i think this makes him feel more at ease that i might make the right decisons for him. but i'm just like anyone else i hate the disease it has robbed me of a freind i cant get the answers i want and i cant find a cure i feel like i have failed him. i feel your sorrow and your pain but you know your place be at peace with this holly. les respects and loves you for more then you will ever know.
kim
als about loving someone

[holly]

Wow kim
i didn't know your history. that's quite a plateful you have. les' mother just called me and i ended up speaking to her for a long time. i try not to tell her too much, but at the same time she has a right to know.
to quickly answer your question, les was diagnosed 3 yrs and 5 months ago. he still has good leg strength, and arm strength, though no small muscle stuff. writing, eating, buttons, etc. are near impossible for him. he types with the aid of a finger stiffener (one finger typing). his speech is mostly all gone. he had a feeding tube put in in october. i inject 2 cans of high nutrient liquid into his stomach with a syringe 3 times a day. (nearly 3000 calories). i started doing this about 4 weeks ago, the weight was dropping off him so fast i was terrified - but now he has put some back on, hurray. he has lost most of his chewing ability. his tongue and mouth muscles do not function very well. he does eat some solid food, but not much. yes i know what you mean about the drinking. he chokes unless he tilts his chin down and pours the liquid in (the physio calls it a chin tilt - fancy name huh). he is dehydrated alot, and gets kidney stones quite frequently, but most of them are small enough to pass without a hospital visit. he has a terrible problem with the thick saliva, it collects like glue in his mouth. liquid also pools in the little pouch just before the valve that separates the mouth tube from the lung tube, so choking is a huge problem. it's his breathing that is the issue now, can't breathe lying down. needs a machine to help him. his upper back and neck muscles are so weak that even though he can stand and walk, he can't hold himself erect. we got a 'minerva' brace for him today, hopefully it will help - though i know he will be very uncomfortable having people see him in it. at any rate, i should get the rest of my stuff done. take it easy kim, try not to let things get you crazy.
holly

[Theresa2004]

Hi kim, i Have quickly read your post, i am at work, and tHis site is slow. i will email you from my Home, and i appreciate your suggestion. i will comment more on tHe forum to Holly also.
kim, some personal information i do Hold back Here, al knows most of it.
as soon as i Have tHe cHance to sit down uninterupted at Home, i will write. it is a long story, and very frustrating.
talk soon, better get back to work.

[lacey]

Holly
i feel for you and can hear your pain in your e-mail. this damn als thing is so cruel and so very hard to watch. life sure doesn't bring you what you think eh? my first husband died 13 years ago(not als) and i was left with 6 children ages 3-12. i was very angry for a long time. then my mother died(als) in '99 (on father's day ironically) and in '00 my dad died (on mother's day go figure) i know some of what you are feeling i think. you are doing the right thing by venting and reaching out to others. i truly do beleive that no one can really understand the pain of losing some one to this disease unless you have expereinced it first hand. it can be so terrifying. i will pray for you holly and i am here for you anytime. new friends are always a good thing!

[PALS Mike]

It amazes me to read everyone's storIes In the forum.
whIle everybody's story Is dIfferent, all share the common thread of wantIng to help and the carIng of others.
It's an amazIng thIng to realIze that people could easIly enough, wallow In theIr own self pIty, but would rather take the tIme and wIsh someone else the best, send love, hugs, prayers, etc.

It's lIke goIn' to a greasy spoon...
the servIce (forum) mIght not be the best (vIruses, slow, etc)...
but the food (for thought) and the company Is worth the waIt to get In.

holly...
If les can get more (preferably not tap) water Into hIm It should help hIm thIn out the thIck salIva In hIs mouth and wIll elImInate the kIdney stones.It Is recommended you should have 1 quart of water per 100 lbs of body weIght Ingested 'gradually' over the course of the day.
It'll flush the crap outta hIs system and should make feel better for the long run.
we order 'monashee sprIng' water(from b.c.) and what a dIfference It does make!!! (water here In calgary Is very hard).

Is It faIr say that les may not ask hIs doctor questIons because he may already know (deep down) the answers and doesn't want a confIrmatIon?
just a thought...

[Theresa2004]

The stories of holly, kim, carol, henry, everyone who has been affected by This disease is incredible. it is amazing.
do we have The right to be angry? yes...do we have The right for self pity? yes we do. are we allowed all The nasty emotions which are a part of This? yes we are.
There is no cure, so what do we all do in The mean time? be here for everyone . holly, you want to cry here, do so...you will find care, nurturing and support. everyone will be able to provide a little of This, a little of That based on Their experiences.
kim, it is hard to love two people, and being torn between Them is aweful, you between husband and tim, me between my obligation to The kids, and him. ( i'll write seperately to your email in more detail).
so what do we do....be There for each oTher in any form we can...curse, yell, cry, and sometimes laugh..........and make people aware of This.
The lcbo, is The liquor store, They have The boxes at The cash....force for more help and research. and help each oTher.

[Al]

Well holly the ontario government thinks we are irresponsible so we have to buy our liquor at a liquor control board of ontario lcbo outlet. god forbid that we should be able to buy it at a corner store. we would all turn into raving alcoholics and spend all our free time boring people on als forum websites talking about our personal drink of choice. lol. we got to sebring florida today at 5. the drive down wasn't too bad. 2 days of on /off again rain but no snow or crappy weather. so you guys know how much i think of you because i'm here checking on everyone. i hope everyone is managing ok and looking after yourselves. take care. al and lee.

[Theresa2004]

Hi al, glad to see you made it in one piece and tHe trip was good.
it is gorgeous and sunny up Here, almost like spring, well, if you listen to wiarton willy tHat is.
i was so surprised wHen i saw tHe donation box at tHe liquor store, tHat is for sure a first.
it seems lately tHat every time i turn around, als is rigHt in our faces...(or in tHe bottom of our glass)...
don't get sun burnt...and enjoy yourselves...