I've been so busy with the FB pages and the steering committee....I have to cut back somehow so I can have a life! I am happy doing this, but not too much...How are you? How is Pilot 1 going for you?
Oh wise woman - you have much to teach me. And I have so much to learn. Can we be Facebook friends and then we can message each other privately? How can I find you on Facebook? Off to make borscht - I wlll write more later. Love your messages!
Hi OMMP, how can Alice write you completely privately? How can I? I think we both need to learn how to write people without ANY ONE else being able to read the messages. Is that possible? I want Alice to be able to feel confident that anything she writes to anyone she befriends on this site is completely private. Do you remember that Al removed all of my posting on one of the general forums because I was afraid Alice would read them and recognize me? There should be a way of giving people complete privacy, right? Hope you're hooting and hollering it up in Texas!!!!!
Dear oh dear OMMP. How do you do it? Courage like yours is what I need but so far all I've come up with is sorrow and fear, no make that terror. Thank you for being such a shining light in what looks like a black hole.
Thank you for thinking of me OMMP! It is one week today since I was diagnosed and I still can't really, really, really wrap my head around it! My body is going haywire! Some days - like today - I feel good. Healthy - except for my useless, gimpy right hand . . . and the occasional tingling of my right toes! I don't want to have to take drugs to sleep but the nights are when the boogieman visits, taking me down a very dark hole. I don't go on this site often - it's hard to figure out. Everyday I write in my journal about something beautiful. Yesterday it was a barred owl that flew in front of me and my dog like a soft brown spirit and then sat on a low branch of an evergreen and stared at us as we stared at it. We walked away while it sat and turned it's head all the way round to follow us. I am too scared to see my friends but just want to spend as much time as possible walking my dog. How are you?
Hi OMMP - We are hanging in there. Still lots of tears and questions. Alice has a wonderful neurologist who very promptly answers emails. Alice and Ben and their best friends are going to Mexico in March for 2 weeks. And Alice and I are planning a trip to see the polar bears in Churchill, Manitoba in Sept/Oct. I think it's good to give Alice some things to look forward to. She's still running a lot. Not sleeping great but she's trying Trazadone (a sedating antidepressant). No one is sleeping well right now!! How are you doing? Having lots of fun, I hope. Ken and Ali wrote her and invited her to correspond with them. Just wonderful! You guys sure are a special bunch!! Love +++
Marta, from the bottom of my heart - thank you. I know you are with family and probably need the fun and happiness you have with them. For you to write my sister so quickly was extremely generous of you. You are a lovely soul and I appreciate everything you have done for me and my sister. Love to you, and have TONS of fun!! Vona
Oh my Ms. Pie. I am Gretchen's sister - Alice. I was diagnosed Tuesday. Am gob-smacked. Can't stop crying. Can't sleep. Don't want to see or talk with anyone. Only pick up the phone if it's my sister, daughter, husband or one friend. I am terrified. Am planning my final exit. My funeral. I feel best when I am moving - walking or running or climbing stairs. I want to run for my life! Vona says you are wonderful. Help!
When you say PM you are you meaning private message. How do you private message on here?
Anyway I hope all goes well with you. I hope to get straightened out on our finances soon so I can hopefully raise enough money to take a trip to Colorado! I want to take my kids so bad! Talk to you soon...
I want to call her ten times a day but I know she wants some privacy right now. She sent out a generic e-mail to her friends and acquaintances asking for some time. She just wants to get her head around this and be with the family. Oh, Marta, what was it like during those first few days when you knew it ALS and you couldn't just keep on hoping it was something else? Alice, that is my sister's name, has registered on your site and she will come back. She will also encourage Ben, her husband, and her daughter, Charlotte, to do the same. We are making arrangements for them to also get in touch with the B.C. ALS support group. But, we're all so terrified and shocked. All we can do is cry. When I put the phone down, I just keep on crying. Alice says she's doing the same. What are we going to do??????