Wendy860
Member
- Joined
- Jan 28, 2008
- Messages
- 10
- Reason
- Friend was DX
- Country
- US
- State
- CT
- City
- North Stonington
Hello, I have friend who has als. She was diagnosed about 10 months ago. I have just come into the scene a couple of weeks ago. It's a very long story but we were childhood friends, very close from second grade on. When I went away to college we lost touch and now have come back into each others lives. I just found out she has als about two weeks ago. I immediately went online to read about als and was so saddened by what I learned! Next I immediately went to visit her in the hospital, and when she saw me, she cried and wanted to know how I found out. I guess she didn't want me to know. During that same visit some important decisions were being made about her going home and I told her I could go and allow her some privacy w/her husband, but she shook her head, no. So, I felt that even though she may not have wanted me to know initially, she now wants me to be envolved. I want so much to help and support her! She is basically bed ridden, although, I'm not sure it has to be that way now that she is home. She uses a little box and types in what she wants to say. Today when I was there, she told me, "I want to fight this thing!" I told her I was so happy to hear that and that I wanted to help her in any way that I could. She then said, "Would you help me stretch, research and find out anything and everything?" Of couse I told her, "YES!" I was so happy to hear that from her! I'm not sure if this is the right place to start, but the reason I joined this forum is to ask for suggestions and help from others who might be able to give me some insight to what I can do for her. One of the things I've noticed is that her family is at odds. It feels to me (toatlly my perception) that her husband is isolating her. It's been difficult for me to actually get in to see her now that she is home. Many times, I'm hearing what she needs or wants from him. His perception and words are very different than what she herself told me today. She is on a lot of medication and gets tired and worn out so quickly, it's difficult to have a conversation that lasts any length of time. I sit and try to put myself in her situation and I get so emotional, I know I have NO idea what it feels like to be her, but what I do know is that I want to help her so much...I want to help her...help her enjoy the time she has left...help her believe that she can still fight.....help her spend time with her daughter....help her to know that she doesn't have to just accept 'settling' for what is easiest for others! She has always been such a vibrant, upbeat, beautiful person, full of life....! How can I get her an advocate? One that has HER in their best interests? How can I help to make sure that she is getting the appropriate care and the correct medications? I am only her friend...her mom and dad have been shut out by her husband....I know there are several issues here, and I hope I'm not overstepping any boundaries with this post, but I just need some direction and thought this might be a good place to start. Thank you so much for taking the time and the energy to read all of this! I appreciate any suggestions that anyone has to offer.
Sincerely,
Wendy
Sincerely,
Wendy