View Full Version : Newcomer.........
Angela
01-21-2005, 03:47 PM
Hi! i have come to tHis website for the first time. my sister's husband, who i love like a brother, was diagnosed with als last month. their world is spinning out of control and i don't know what to do to help. i would love some suggestions from someone who's been there............
PALS Mike
01-21-2005, 04:40 PM
First thing to do...just be there for them.
be there to tell him/them you "love him/them"...
be there to hug them...
be a shoulder to cry on...
help him to never give up!
you've made the biggest leap (to help them) by seeking the advice/help of people who are walking the same road.
miracles can and do happen everyday...
so never give up hope.
Carol Deboer
01-21-2005, 10:32 PM
Hi angela,
welcome to our Home. sorry to Hear about your brotHer in law. tHere is all kinds of Help Here. as mike says,love and support from family and friends is good medicine. if you Have some time, read some of tHe former posts from all of us from weeks and montHs ago. tHere is some good reading and some good laugHs. yes, you will find lots of Humour Here. it is a neccesity wHen you are dealing witH adversity to tHis degree. my Husband Henry, Has Had als for almost 7 years now. we Have Had some difficult times, but, we Have Had some fabulous times too. its all in your approacH to life. your Heart will lead you in tHe direction you need to go to Help your family at tHis difficult time. tHe best of luck to you all, and we will add you to our prayer list. stay strong, and if you need anytHing at all feel free to ask for Help. we will all Help you, tHe best we can. take care....
carol xo
karenmorrison
01-21-2005, 10:50 PM
Richard has had als for 2 1/2 years...we take one day at a time...we laugh and he seems to be much better then when he was alone...but laughter, hope and love is the key....so give all you can with your heart and soul....we make light at times of the situation and that sometimes help...so stay positive...your in our prayers....Richard and karen
TBear
01-22-2005, 11:12 AM
Hi angela:
sorry you're Here.. but welcome to our little corner of wackiness. you can Help out you sister and Her Husband in many ways and if you go to tHe als website you''ll see tHat tHere are publications online tHat will give you some suggestions.
tHe biggest step you've already made... and tHat is tHat you've gotten involved! be Helpful to your sister and Hopeful to your brotHer in law... after tHat come Here often and ask questions... oH and yes you'll need a substantial sense of Humour.
t.
Angela
01-23-2005, 08:19 AM
Thanks for your words of encouragement.......it is nice to talk to people who understand als......a lot of people around here don't even know what als is. my brother-in-law's specialist has 40 patients in new brunswick and there is not a support group in their city. i am going to try to direct my sister to this site.....right now she is really pissed at the world and neither one is open to suggestions at the moment. i will follow your advise is just be there. Thanks again, angela
PALS Mike
01-24-2005, 04:41 PM
What part of new brunswick are you from?
i'm a military brat, and used to live in the miramichi area...
mannco74
01-25-2005, 02:39 PM
Hi angela,
i delivered tHiss address to national neurologists convention. it was called "wHat we wanted our neurologist to know. Hope it is useful
Http://www.als.ca/_media/docs/cHrismann.pdf
please disreguard tHe stupid upper case H's and cHrismann is upper case. may be one day i will figure out some benefit to us from new update. site is not disability freindly as i type witH one remaining finger and cut and paste mucH
holly
01-28-2005, 11:34 PM
Welcome angela
i'm new to the forum too. not so new to living with a spouse with als. i've found (when i do have time to sit down and read the forums) a wealth of information, oodles of empathy and a fabulous sounding board. keep the lines of communication open to them. it's sooo hard to talk about it at first, cause it's like you make it real but talking about it. you just want to make it go away. but there will come a time when they will want to talk, and i know it''s helped me when i know someone is going to be receptive to me just talking it out without trying to "fix" it for me. a night with a couple of rum and cokes and a box of kleenex doesn't hurt either.
holly
TBear
01-29-2005, 09:44 AM
... oh holly, you and les must be one of us. nobody else can finish off an als posting without a booze reference!
holly
01-29-2005, 11:46 AM
Tbear
i don't want to mislead you......les can't drink anymore and though i'd like to take up the slack, i worry that if i have more than two i'll not be alert enough to look after les. so i stick to about two, but boy do i make them count.
holly
TBear
01-29-2005, 12:23 PM
Hi Holly:
my wife couldn't drink eitHer... but it never stopped Her from enjoying a glass of wine or two or tHree! sHe probably wore as mucH as sHe drank, but sHe enjoyed it a lot! it's one of tHe last tHings we did togetHer! tHere seems to be an afinity for rum Here tHougH.
t
PALS Mike
01-29-2005, 07:08 PM
It's a fine line between 'social drinking' and 'drinking to cope'...
you hafta be careful.
So what'S the worSt it can do?? kill you??? big deal. i laugh in the face of adverSity. actually it ScareS the hell out of me but you do what you have to do. right guyS?
TBear
01-30-2005, 06:38 PM
... so much is lost over the course of this that it is important to try to enjoy the things that you did before and maintain any semblance of normalcy.
you guys have a tough enough job dealing with the sickness without having to concern yourselves with the protocol and mores of society. especially for you, life is way too short to not enjoy what you can... (even if it involves jumping out of perfectly servicable airplanes at 3000 ft.) so, if it included a glass or two of fine wine with dinner then so be it... whether dinner involved mashed up meat and veggies, or 250 mls of nutrisource through a g-tube!
t.
holly
01-30-2005, 10:56 PM
Tbear,
i read your comment about jumping out of planes. les and i did that a few years ago. it was at thanksgiving. i'm giving thanks that we made it okay. i thought i would like skydiving, but it's not the feeling i wanted. once the chute opens it doesn't seem like you're a bird. everyone tells me that hang gliding is more like being a bird, but now that i'm older and have to think about so many more responsibilities, i'm to chicken to try (chickens don't fly anyways).
holly
