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mmob

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Friend was DX
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ma
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chelmsford
Hello,

I don't have ALS but my best friend was just diagnosed. Aside from falling apart and feeling unbelievably helpless. I want to know what to do to help, I want to be there for her and for her husband and two young children. She has bulbar onset (yes, I have learned more than I ever hoped to learn about this awful thing) and she seems to have a very very slight bit of dementia. So far her main symptoms are the slurred speech - which is worse when she's tired. She is still strong otherwise.

I don't know what to ask - just for some thoughts maybe - what can I do?

-A very very heartbroken friend
Maria
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Maria ... I'm so sorry for your friend's diagnosed. It is shattering when you first get the news, but it will get easier as the days go by.

Being her friend and giving her support and help is the best thing of all. Don't push her to accept help right now ... she needs to get everything together in her head ... but be there for her. It took me about two weeks before I could see friends and relatives without bawling my eyes out, but then it got better.

In March, it will be three years since my symptoms first appeared, and I am still functioning OK, driving and getting around. The point to remember is that we all "live" with ALS ... it's not the end of the story. There will be lots of learning to do, and big adjustments, but you can have a remarkably good life with ALS, and with her husband and children and friends like you, she's got the support she needs.

Blessings to all of you.
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
City
Anytown
Maria, I'd say just tell her what you told us. Let her know you want to be there for her & be willing to listen to her when she doesn't want to burden her husband. Just keep being her best friend. Other things, maybe try to make some things fun or more pleasant, maybe make sure she has a super duper blender so that smoothies are easy. If she goes onto a bipap machine, maybe get her a pretty insulating hose cover, it makes it look so much less sterile and medical, much more homey. .... or some essential oils to set outside of the air intake for it, so it smells nice when she is wearing the mask. I'm using a pure vanilla and a spice oil right now, and it smells great! There is a picture of my hose cover on my profile page, but don't know if you can view photos yet. As a new member I think you have to have a certain number of posts before you can view albums, etc.

But more than "things" just educating yourself about the disease, and being there for her is the best of all.
 
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DeeMichelle

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Mar 20, 2008
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Lost a loved one
Country
UK
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Hertfordshire
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St Albans
Being there and keeping on being a friend- Bulbar symptoms can being so isolating. I know my dad often felt embarrassed to see even extended family. You sound like such a wonderful friend and that's something so special to be able to offer.
Dee
 

t34gib

Distinguished member
Joined
Jan 2, 2009
Messages
234
Diagnosis
12/2008
Country
US
State
FL
City
Fort Pierce
A Friend

Maria, I am so sorry for your friend's diagnosed and for you. I have early bulbar symptoms and don't yet know what the final diagnosed will be. I find the slurring of my speech to be devastating to me. I can be understood but have always been a person who is "control" and now I can't really control much of anything. I still cry very easily when thinking about where this could go.

One thing, my daughter lets me be concerned about it. She always says, it may not be, but, if it is we will deal with whatever comes along and it doesn't matter if we have 3 days or 30 years left together we will not spend one minute of that time being negative. And it helps. It helps me to know I will have the support there when I really need it. My sister is the same way, although she lives far away. But just knowing I will have the help and support when it is needed helps to calm me. So be there. Let her have her feelings now and even though you may feel helpless right now, you aren't. Just being there is the help she needs right now.
My best to you both
Nancy
 

BarryG

Extremely helpful member
Joined
Nov 19, 2008
Messages
2,981
Diagnosis
02/2008
Country
CA
State
Alberta
City
Hinton
Maria, I'm really sorry about your friend's diagnosis. It's hard to accept this horrible disease whether it is you that has it or someone that you love. I was diagnosed with bulbar ALS about a year ago and my speech has gotten steadily worse to the point that even I have trouble understanding myself. The best thing that you can do for your friend is to spend as much time with her as you can. Like DeeMichelle said, it is very isolating when you can't talk well so your friend will really appreciate having someone who can understand and support her. Even things like shopping are easier when you have someone along who can answer questions and do the talking, I've had sales people and cashiers look at me like I'm rude when I mumble a response to their questions.
It is easy to be depressed about the future but you have come to the right place for information and support.
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Hi Maria, I am so sorry about your friend's diagnosed. I will keep her, her family, and you (of courde) in my prayers. Yes, this diseases is indeed a "monster." My son was diagnoseded with bulbar onset in 2006, by 2007 he was gone. It was rapid. I know what the family is going through. May God bless them. God bless you, too for being such a good friend. Keep us posted. Oh Maria, how old is your friend, and what is her name? Thanks, and sorry for all the questions.

Irma
 

mmob

New member
Joined
Jan 10, 2009
Messages
2
Reason
Friend was DX
Country
US
State
ma
City
chelmsford
Thank you all for the responses. My friend's name is Kim and she is only in her early 40's. What scares me the most is the dementia. And the unknown. Not knowing what I can do to help - thank you for the suggestions. I have no idea if the dementia changes her outlook or not - it's slight at this point but it's there. I guess this will be a journey - a hard one, but a journey for all of us - especially her immediate family. I hope to be able to help and to be there with her for it. She's been my friend for years - we were college roommates, in each other's weddings, and we have so many memories together. I would do anything for her - I just wish most of all I could cure her......all of you - thank you so much for the support - I'm sure I will be here learning as we go.

Much love -
Maria
 

Connie

Active member
Joined
Apr 1, 2008
Messages
60
Diagnosis
03/2008
Country
US
State
Ca
City
Granite Bay
Hi Maria,

I can certainly relate to your feelings as my husband has bulbar onset ALS with very difficult speech now. He was always a very active, sociable man who does feel isolated now with the limitations in his being able to communicate clearly.

The most helpful thing to him, as others are saying too, is be there for your friend and be positive. For my husband, focusing on what he can still do and appreciating today means everything. And it does get easier with time because we need to try and appreciate the time we have. We never know when our day will come-whether we are seemingly healthy or not.

Take care of yourself and God Bless you and yours.

Connie
 
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