A dear friend was just DX

[jackiemh1978]

My Mom's best friend for the past 20 something years has always been like my big sister. My mom always said that she raised us together - even though she's only a few years younger than herself. lol Anyway - 15 months ago when my daughter was born she was healthy, in October - she was healthy - by Thanksgiving she was feeling a lot of numbness in her left arm and by Christmas that arm was numb. After a ton of testing she was just diagnosed with ALS.
I'm at a total loss. We're told that she may have three years. I really don't know how to handle this. Whenever something big happened in my life she was there. She helped get me though when my Great Grandmother died, again when my Daddy died and yet again when my Grandma died. She was there in the room when my daughter was born. Now we're told that she is dying. She can't help me through this, we need to help her and I don't know how.
Can someone tell me how to help her and what we're in for. I don't know what lays ahead. She has no feeling in her left arm, she drags her led a little when she walks and she is having touble swallowing.

 

[Blubear]

Hi jackiemh1978....Welcome to our forum. So sorry about the diagnosis of your "big sister". It is tough to hear when you hear it huh. You are all in the what I call "The walking Zombie" stage. It is really hard to come to grips with all of it at once. But, I can tell you that I know people who have had ALS for 19 plus years. The doctor told my dad 2 years. That was last Sept. He still walks, talks eats etc..He is still going strong. Everyone's path with this disease is different. Some, it effects their speech and swallowing, but have yet to have any symptoms elsewhere, some have loss of strength of their legs, or just their arms. Then the disease progresses from there. Eventually, you will settle into living with the disease and life will not be so shocking anymore. Take each symptom as is comes, prepare for things to come. This forum is a great place to start. It is a wealth of information, and has a ton of understand people who are living with the disease, or caring for someone who has the disease. There is a lot of learning that you will be doing. The list is endless. If you have specific questions, just ask. We are all here for you, and feel your pain and certainly can relate to it. Does she have an ALS specialist? Has she contacted the local ALS assoc. yet? That is where you need to start. Please give her a hug from me, as I know she needs one, and so do you hun!
~Kari

 

[tdamess]

the best way to help her is show her your love and support .. be there when she needs you it's all you can do ... sending good thought's your way

 

[CAHPAH]

Jackie
So sorry you have to be here but I know will find this a very helpful forum. Sure the doctors say three years, but has you will learn, ALS effects everyone differently. You really don't know who much time your friend has. You may feel helpless now but I am confident as close as you two are as her needs arise you will see them. You might want to give her a heads up about this forum. Very best wishes to you.
Jim