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Rosaleen

New member
Joined
Mar 1, 2007
Messages
4
Reason
Friend was DX
Country
CA
State
Ontario
City
Toronto
Good morning everyone,

I have just registered today on this forum, and am just saying hello. I was told about this forum and thought I would check it out. My dearest and closest friend of 30 years is being diagnosed with ALS/PLS - they have not said which she has. Many, many tests and blood work, which seems to par for the course after reading the many threads here. She has had such a rapid deterioration it is alarming. Since October 06 she has gone from a fully functional active woman to a wheelchair and not being able to do anything on her own. I am not sure what I am looking for here. I want to help my friend but seem to be a loss at what to do. I was phoning everyday but that seemed to much for her, so I backed off a bit. I visit every week, but those visits are getting harder and harder. She does not want to see anyone (she is only now just been prescribed anti-depressants). I want to help and be supportive. She does have a partner who does everything for her, home care is still being put in place, but they have not accepted any help from anyone. Any suggestions on how to be the best friend to her that I can. How to be supportive but not intruding. It is all so frustrating and hopeless.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Rosaleen. Welcome to the forum. I hope that we will be able to give you advice and support. It is very difficult I know to see a friend deteriorate so fast. I think I met the lady you are speaking about at the clinic and it is surprising to see a change such as you describe in such a short time compared to how I and others progress. Sometimes we need time to adjust to the idea of this disease. I'd still call every couple of days and ask if she is feeling up to a visit. After the diagnosis sinks in I am sure she will want visits from friends. The last thing she will want is to feel abandoned by her friends and family. When you visit if she wants to talk about the disease let her talk. I know it is difficult to listen sometimes but we need to vent sometimes and if no one wants to listen because they feel uncomfortable then we hold it in and become withdrawn. This isn't a good thing either. Hope this helps and if you have any questions feel free to ask.
AL.
 

Rosaleen

New member
Joined
Mar 1, 2007
Messages
4
Reason
Friend was DX
Country
CA
State
Ontario
City
Toronto
Hi Al,

Yes, I believe you met her yesterday. She was the person who told me about this forum and talked quite highly of you. I try and take the lead from her. I hope she looks into this forum as well, so she can get the support and care that you and this forum provides.

Rosaleen
 

Mike27

Distinguished member
Joined
Apr 19, 2005
Messages
280
Diagnosis
10/1993
Country
CA
State
Alberta
City
Edmonton
Hi and welcome Rosaleen,
This is a horrible, cruel disease. Your friend is probably still trying to comprehend what is happening. When I was first diagnosed I didn't want to see anyone either! I always felt that I could see myself, in this state, through my friends eyes and I couldn't bear it. I guess the thought of people feeling sorry for me was the problem. (not saying that you're feeling sorry for her, but that may be the way she is seeing it)

It'll take a little time but your friend will come around. Just let her know that your still there, even if she is standoffish (if that's even a word) right now, she'll come around. Maybe send her flowers and a note saying that you'll be with her no matter what the circumstance.
What meant the most to me was when my friends came over, they treated me as they did before. We had the same ol' conversations, told the same ol' stupid jokes and were there when I was ready to talk about ALS. Nobody rushed me.

You sound like a very good, life-long friend. Those are few and far between and precious as gold! Your friend knows...
 

SoniaT

Active member
Joined
Nov 20, 2003
Messages
51
Country
CA
State
British Columbia
City
Vancouver
Hi and welcome Rosaleen,

I'm very sorry to hear about your friend. I agree with Al and Mike27. I think she will come around and will want to have company or a chat on the telephone.

Perhaps sending flowers would be a nice idea, something that she loves, something bright and cheerful. I'm thinking that if you sent her a nice card every now and then maybe something humorous or something that you know would be meaning full to her would be a nice touch.

Let her set the pace, then you can follow her lead. Just hang in there, I'm sure she knows that you love her. I think you are an awesome friend and I can only imagine how difficult this is for you too.

Take care,

SoniaT
Vancouver, BC
 

Rosaleen

New member
Joined
Mar 1, 2007
Messages
4
Reason
Friend was DX
Country
CA
State
Ontario
City
Toronto
Thank you all for responding.

I feel better knowing that I think I have been doing the things you suggest, but not realizing it or rather feeling like it was enough. I will continue to follow her lead and be there for her and be her friend, to let her know that she is loved and supported. I only wish there was more I could do. I realize that anyone who is a caregiver or friend of someone who is seriously ill feels the same way, that they want to help and do more.

Rosaleen
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hello Rosaleen, welcome to the forum. It is nice to see you and your friend are in good hands with all our great friends up in Canada.

As far as offering support, the thing I appreciate the most is when somebody makes me laugh. If you see a cartoon that tells a joke you think she'd appreciate, I'd send it with a little note that lets her know you still think of her. This works best if you 2 have shared stories that you can reference somehow.

I appreciate the get well cards and flowers. But sometimes it helps to be shaken out of my mood. Cindy
 
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