Status
Not open for further replies.
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
 
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
 
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.
 
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!
 
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...
 
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.
 
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.
 
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...
 
Status
Not open for further replies.
Back
Top