making friends

[LizT]

Just curious- how is it that all of you PALS made the decision to become friends with other PALS? To me it seems obvious. But just the other day, I was telling Ray about this place and asked him if he wanted to get in touch with anyone else who has the disease. He didnt even have to think about it. It was a quick and clear "No"

Maybe he is afraid of losing people? What do you think?

 

[abbas child]

Liz, people have such different needs socially. I have no desire to go to an ALS meeting. My husband, Phil, asks every day about my friends here but never wants to read anything, and wouldn't join. He knows I'm looking for answers about what's coming in the progression, and I think at this point it's a relief. In the beginning he did all the searching. Now he wants to relax in a way that takes his mind away from what is painful. Your Ray, if I remember correctly, has had this disease for quite a while, hasn't he? He's made the big decisions already and he has you... I suspect you're all the social life he feels a need for. That's my guess.

 

[TedH5]

I agree with Ann. I have zero desire to go to a meeting but I do find a connection and a bond with the people on here that I enjoy. I was a litle nervous at first and was not sure if I would be accepted. I am very glad that I came here and have made so many friends. I have learned so much from the people on here they are an excellent resource. Like everything else with this disease it is a personal decision. I wouldn't push it if he's not interested. As I have said before he is lucky to have you!

 

[sadiemae]

I am the CALS, and the friendship I have found here helps me cope. "Normal people" just do not get it. My husband does not have any desire to meet or talk with other PALS, probably because he doesn't want the comparing symptoms stuff. Even a yr into his DX, he is still not "comfortable" with being disabled. I was very upset over the past week about Linda, and my daughter made the comment that maybe I shouldn't make friends on here, but I wouldn't give up anyone here, just to spare the pain.

 

[BarryG]

Losing friends is so hard but not having any is harder. I have always appreciated having a place where I can talk easily about this disease and how it is affecting me and because I cant talk this forum is the easiest place for me.

 

[abbas child]

We really are fortunate. In a different age there would have been such isolation, whereas here we are, talking together and barely aware that there's a problem. I don't see or hear anything unusual, just mostly good advice (Barry) and I can be in a hospital bed at any hour chatting away. I suppose if we focus on future losses, whether comparing our "progression" to someone else's or worrying about losing a friend, it would seem morbid. But we get to have fun, we're understood in a pretty normal way, so... we pick ourselves up after losing a dear friend and keep on going. I've thought for a long time one of the secrets of the success here is the number of bulbarians here, because you have to type pretty much anyway to communicate, and as a result are on-line more. And then there's also a lack of bitterness. Instead of that anger that lashes out, there's a friendliness...

 

[BarryG]

How true Ann! Just today I was wondering, what if I had gotten ALS before the internet or worse, before the electronic speaking devices that I use every day to talk. And what about if I were illiterate? Sorry if I am a little off topic but just a thought that occurred to me.

Like many men I was not one to talk about my feelings or problems. We are conditioned from childhood that men don't talk about feelings and relationships and most of us would rather leave it to our wives. It was almost a year after my diagnosis and a year and a half after my first recognized symptoms before I joined this forum and by that time I needed to talk and to make friends who understood. Before ALS I had nothing to say, now I have a lot to say but can't talk.

 

[abbas child]

Barry, I was going to leave the "men are from Mars" out of it, but...Really, your situation is exactly what I grew up with and also the case with Phil, who says he has to talk a lot at work, and likes quiet just fine the rest of the time. Yet, he asks me who called, who I talked with and wants to know everything "he missed". When I relate a struggle someone here is having, he gets tears in his eyes; he cares plenty. However, he mostly wants to hear it filtered through me.

You have a lot worth saying. I know (how many Egg pages were there?) your talking here is really important. So, please keep saying all those things you have to say!

 

[Ladyinn]

I hesitated to use the forum for a long time after being diagnosed... I was afraid to see what I was facing as things progressed. But - I have found the site to be uplifting and am learning so much about how to prepare (if that is even possible) for future losses. I too felt a real sense of depression and sorrow with Linda's passing last week until I realized how lucky I was to have known her at all. Without this forum I would have never shared time with her.

My life partner, Tim, has no dedsire to come here but on occassion I share a story or suggestion and he says, "wow, glad you have found the forum helpful." Someday I think he will come here too.

 

[abbas child]

Oh, yes.... I think Phil will be all over this forum later. (Hi, Honey!)

Diane, I'm really glad you arrived here and stayed. And, doggone, it's time to say "goodnight JimBob". XO

 

[Phil M]

I was afraid to see what I was facing as things progressed.

I believe that is the number one reason. I felt that way for a while too. It wasn't until I accepted what was going to happen to me that I wanted to know others. And I think I am just now getting to the point where I could meet another pals in person.

 

[joelc]

I have always been a social person and belonging to this forum has given me a purpose to keep living. I have always loved to help people so try to do that here when I can. As I said, it has given me a purpose to keep living. I have also met the nicest new friends the world has to offer. My life is so much richer because of it. If I did not have ALS I would not have experienced this. Life is full because of this!

LOVE to YOU All!

 

[Mick n Ang]

Mick went to two meetings at the MND, made two freinds who have since passed and this has now been too painful for him to go back so he is happy for me to share the news from here and time to time comes sitting with me when i'm logged in and shares your laughter an thoughts without too much emotional involvement and hes happy with that, I think your all great and you all help me get through all this, you allknow what we are going through along with all your own stuff too, Thanks Ang xx

 

[olly]

i came to this forum to learn more about mnd and was very confused about my diagnosed of pls.
getting to know others and discovering they had the same problems as me has helped alot............you dont feel quite as alone.
i have met so many wonderfull people on this forum that have made my life richer and more bearable to cope with.
yes its hard when we loose friends for instance beth but i feel its better to know such wonderfull people than not have known them at all.
unlike animals us humans have in inward desire to reach out to others...........human nature

 

[Danijela]

My partner does not belong to this forum, but does to a smaller UK one, where he reads regularly but seldom posts. He does, however, know of what goes on here, he knows of people by their name or pseudonym or circumstance.

I agree about the point made about the ways in which new technologies have enabled us to communicate and connect.

We have been to a couple of MND meetings and have met other PALs some of whom have passed. We were both scared about seeing other people with MND due to a degree of progression they may have, but meeting them actually normalised the disease for us (imagining something can be worse than experiencing it first hand).

Some people simply take a view that if they would not chose to know somebody prior to a particular circumstance (e.g. diagnosis) they have no interest in connecting with them due to potentially having only 1 thing in common (the diagnosis). I know this closes down a lot of possibilities, but can relate. As a new mother I have no interest in joining in with other new mothers and their babies, but have maintained my pre-motherhood circle of friends, behaviours and practices.

Dani