Newcomer.........

Status
Not open for further replies.

Angela

New member
Joined
Dec 4, 2004
Messages
2
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

Distinguished member
Joined
Oct 13, 2004
Messages
138
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

Distinguished member
Joined
May 7, 2003
Messages
343
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

Member
Joined
Nov 25, 2004
Messages
16
Hi

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

Distinguished member
Joined
Nov 4, 2003
Messages
430
Country
CA
State
ON
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

New member
Joined
Dec 4, 2004
Messages
2
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

Distinguished member
Joined
Oct 13, 2004
Messages
138
What part of new brunswick are you from?

i'm a military brat, and used to live in the miramichi area...
 

mannco74

Active member
Joined
May 7, 2003
Messages
78
new comer

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

Member
Joined
Jan 10, 2005
Messages
19
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

Distinguished member
Joined
Nov 4, 2003
Messages
430
Country
CA
State
ON
... oh holly, you and les must be one of us. nobody else can finish off an als posting without a booze reference!
 

holly

Member
Joined
Jan 10, 2005
Messages
19
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

Distinguished member
Joined
Nov 4, 2003
Messages
430
Country
CA
State
ON
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

Distinguished member
Joined
Oct 13, 2004
Messages
138
It's a fine line between 'social drinking' and 'drinking to cope'...

you hafta be careful.
 

Al

Legendary member
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
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

Distinguished member
Joined
Nov 4, 2003
Messages
430
Country
CA
State
ON
... 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.
 
Status
Not open for further replies.
Top