How to be a good friend

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DigPlantWeed

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Nov 12, 2012
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Friend was DX
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US
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MD
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Rockville
The husband of a friend-since-childhood was recently diagnosed. One doctor said PMD, another said a variant of ALS.

I'm wondering how to be a good friend to them from 1500 miles away. My husband and I email and call them, and I'm going to visit them early in 2013. And we pray for him (and her, too, of course).

Of course, I wish there were something more I could do.

If you are a PALS, can you suggest anything?
 

CGARS

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Joined
Apr 24, 2012
Messages
308
Reason
PALS
Diagnosis
06/2011
Country
CA
State
Ontario
City
St. Catharines
What I value from my friends, is they don't treat me any differently.
...and you know what, when I'm around them, I don't feel the least bit sick.
Even if I ask for help with something, they do it, and it's not made a big deal.

Also, try and be as positive as possible... Attitude is contagious (good and bad)

You're already a good friend for asking.

Cheers,
Casey
 

Barbie

Extremely helpful member
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Dec 29, 2007
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2,659
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Lost a loved one
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01/2007
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FL
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orlando
how wonderful that you care so much! So so many pals and cals see their friends and family disappear. Since you live so far away, your calls and emails will be much appreciated. Since my husband can't talk well or work, he is very active emailing. I so appreciate the people who correspond with him, argue with him over politics, send jokes, and basically make him feel like he still counts (which he does). When you do go visit, try to look for a need they may have that you can fill. While you visit, don't be the visitor--do that laundry, mop those floors, run to the grocery store, and give the cals a real and well deserved break. Treat the pals like you did before and with the respect they had before ALS. if you teased before, tease now. but remember that activities need to revolve around their health and needs.
 

mich5

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275
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PALS
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01/2012
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west
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mid
My only comment would be to continue to email even if they don't reply for a week or so. I'm so thankful for the incoming emails that make me smile. But, if I'm having a good day, I would rather be out doing things while I still can. And, if I'm having a bad day, replying is sometimes physically difficult. I find I'm only replying a few times a week to my various friends. Each one will sometimes go a while before hearing back from me.
 

DigPlantWeed

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Messages
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Reason
Friend was DX
Country
US
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MD
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Rockville
Thank you for your replies. We will continue to call and email, and help when we visit.

My husband and I came up with the idea for a t-shirt to have made for him, based on an inside joke he and my Mr have. (Unrelated to his illness.) We think it will give him a good laugh.
 

rosec

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Aug 2, 2012
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330
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Lost a loved one
Diagnosis
11/2009
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CA
City
Costa Mesa
When you go to visit them, if you are a good cook, you can cook for your friends. Cook extra and freeze. You can do stuff like replacing the batteries in the smoke detectors, fix any leaky faucets, etc. Remember, your friend has to do the work of three people now - hers, her husband's and the work of a care giver.
 

susanjean

New member
Joined
Nov 13, 2012
Messages
2
Reason
Loved one DX
Diagnosis
08/2012
Country
US
State
michigan
City
Prudenville
Thank you for this insight. My son in law was just diagnosised in Aug and I am having trouble with what to say to my daughter and her husband. You helped alot
 

vzandt

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Joined
Nov 12, 2011
Messages
570
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Lost a loved one
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04/2010
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N.H.
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Noneknown
Laughter. Follow their lead. A good laugh does wonders as does a good cry if either of them need it. My best friend and my sister don't ask "what can I do (I would say nothing). They just DO. Sweep..vacume..dishes..make me get out..
Remember ...they are still your friends. The same friends as before ALS.
 

JFTravis

New member
Joined
Nov 14, 2012
Messages
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Reason
Loved one DX
Country
US
State
Arizona
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Phoenix
Hi,
First post here. My brother became symptomatic in January 2011, and was diagnosed with LMND in august. Has since been diagnosed with ALS. Really hard to deal with when I am not with him, although I am good when we are together, he is my closest blood relative, excluding my wife and kids. He became symptomatic within 2 weeks of retiring after 34 years with a natural gas company.

It is hard to understand how there is not a way that you can trace it back (with certainty) to a specific environmental issue, or to something specific that happened in his life. I am a diagnostician in my field and am used to being able to find something that I can put my finger on as a reason for cause and effect. There are things that are suspect, but again after reading on here and everything else I have been able to read on ALS, I come back thinking that all of you who are actually living this horrible disease would have nailed down a common denominator, but there in not one, ALS just happens. I don't know why I feel this way, cancer just happens too, as do heart issues with people who are in low risk, and you find yourself shaking your head and saying "why him", or why anybody for that matter.

The only thing that I find is that the more research I do, the less certain I am of what brought this disease on. Genetic from birth? One article said that people who have had head injuries have a higher rate, and there have been posts written on here that even suggested pesticide exposure may have contributed? The more I read, again the less I know. ALS just happens!

So all of everyones research leads the same thing I read when my brother was first diagnosed. There is nothing that anyone can do, the doctors promise that they can make you comfortable, but reading here I don't see that. My brother is completely opposed to taking pain killers, so he just deals with it. He is barely able to walk more than a short distance now with his cane, both legs are braced, and his right hand severely affected, his left is starting to be affected also. This man is the same that just two years ago was hunting elk with me in the mountains, he and I dragging a 600# animal around together, hoisting it up in a big tree. Eleven months ago we went together for the last time, and even though it was the warmest year we have ever hunted in, the cold was too much, and he had to leave early, ending 35 years of hunting together. Gosh, I cant believe I am just writing all of this on here, I know I should be more uplifting, I just love him so much and don't want him to go. I hunted in the mountains with a friend a couple of weeks back, the first elk hunt I have ever been on without him and I kept taking pictures and video and sending it to him in real time. He wanted to be there so bad. I found myself breaking down quietly when I was alone on the trip, something that has been happening a lot lately. I feel bad, he is the one who is going through all of this yet I am the one breaking down.

God bless all of you who are going through this, I know you are dealing with things I cannot even fathom. There is strength in your words, and i appreciate what you have all shared.
Jim
 

vzandt

Senior member
Joined
Nov 12, 2011
Messages
570
Reason
Lost a loved one
Diagnosis
04/2010
Country
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N.H.
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Jim...you are going through it to and you have every right to break down. ALS is a game changer for everyone involved. It hurts everyone involved. Don't feel bad because of a breakdown now and then. Its just your heart relieving a little pressure.
 

hjlindley

Senior member
Joined
Dec 1, 2011
Messages
760
Reason
PALS
Diagnosis
10/2011
Country
US
State
VA
City
Richmond
I think Casey's point about not treating us differntly is top.And anything that makes me laugh!
 

Katie C

Very helpful member
Joined
Aug 1, 2009
Messages
1,560
Reason
Lost a loved one
Diagnosis
07/2009
Country
US
State
CA
City
San Jose
Stay in touch... that's huge! See if you can find a way to visit on occasion. I live in California.. our friends from Boston made it out several times. It was hugely supportive.
 

pscheffel

Distinguished member
Joined
Apr 13, 2012
Messages
145
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Lost a loved one
Diagnosis
12/2011
Country
US
State
Tx
City
NB
Stay in touch means the most. Even if it's a phone call/e-mail/text. I can't tell you how many times I have been told they will come by and visit my Mom or call and never do. It hurts even more when close family or friends don't find a way to stop their busy lives to say hi. One day they won't even have that chance...
 

pscheffel

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Joined
Apr 13, 2012
Messages
145
Reason
Lost a loved one
Diagnosis
12/2011
Country
US
State
Tx
City
NB
And Jim, that must have been a tough hunting trip. It's awesome you tried keeping your brother involved. My stepDad and I break down quite frequently. It's part of coping and staying strong for your PALS.
 

Johnnysgal

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Joined
Nov 14, 2012
Messages
25
Reason
Friend was DX
Country
US
State
Mass
City
Boston
A good laugh is one of the best things in life, with or without ALS.
 
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