Gretchen
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  • Hello, its nice to meet you all. Ive been experiencing some strange symptoms. Im having weakness in my legs and sometimes exsessive saliva fills my mouth but not constant. What are the onset symptoms of Als? Im wondering whats going on with myself if you can help i would much appreciate it. Thank you Donna1959
    My Christmas wish for you and your family is to live in Peace Harmony Laughter and Love and know how Beautiful You shine so bright with your Love and Light! I just want you know how much you mean to me ... we have never met in person, but you are known to me and stay in my heart. I feel we have been friends forever ....
    Ken was nice to me too. I had said that I don't feel pretty anymore and he assures that I still was. What a sweet man he was. Yes, Lorna has been going crazy with the ArtPrize exhibition. And her oldest son, his wife and 9 month old grandson are arriving this evening from Montana. I spent some time with school friends last night and we had a great and affection filled time. We have been busy busy busy! More parties this weekend with my dad's side of the family, a Harry Potter marathon with my teenaged nephew and also a dress rehearsal of Aladin that he has a part in. I'd like to see the program "Dying with Dignity". I've found that my iPad and a stylus in each hand works for me thus far. I tried a Tobii eye gaze unit and it was very easy to use. The rep said she could hook it up to the Internet too. I hope you are doing well Sweet Lady! Love you a bunch!
    Hi,
    my name is Tom and I am a market researcher and have a project that involves both ALS patients and their support network in Canada. The research takes 45-60 minutes over the telephone and I am offering $100 for your time and participation. If you are in Toronto, I am also looking to speak with people face to face in a downtown facility.

    The research objectives of the study are very broad and no personal information is asked of you. Specific areas of discussion focus on the following:
    1. Attitudes and behaviours towards ALS
    2. How the ALS condition is currently managed
    3. What patient services are available and being used

    Please contact me if you are interested in participating or if you know of anyone that may be interested in participating in this study to better understand the challenges of living with ALS.
    With thanks
    Tom
    [email protected]
    www.mcwhirter.ca
    I suppose it was only a month ago that Ken passed away. No wonder you didn't know. It seems like it was longer ago. Too much has happened.
    I wish I could say something to comfort you. It's been a rough few months.

    I love you.
    Sweetheart, Ken passed suddenly a couple months ago. We still talk to our friends even though they have gone. I've been quiet lately because the passing of too many friends has knocked the wind out of me and I just now am getting back to a good place. We have no choice but to deal with it. It hurts a lot sometimes Sweet Vona. When we're healthy we try not to think about death. In this situation we think about it a lot. We're looking right at it. I choose to do it well.

    I don't use a wheelchair all the time. Just when there will be a lot of walking. At home I use AFOs and a rollator. I did just get a power wheelchair which I'm pretty excited about. My legs are going and this will make things a lot easier. The way I see it is that I'm not dying of ALS, I'm living with it and doing whatever it takes to live as comfortably as I can. That entails not being in denial about it. My legs are going and I'm ready for that. I am trying to be ready for it all.
    Hi Gretchen,
    Have had a few tough days,my days of typing are coming to the end,my right had is gone.So weak I cannot use it for anything.----------------------Love You--Ken
    I apologize for not responding sooner. I have not visited this board in a while. I'm sorry to learn of the recent news you received. I know how emotionally difficult it is. I am still very emotional about my diagnosis, but feel very fortunate to have an unbelievable support system from family, friends and coworkers. Please feel free to contact me if I can be of any assistance. In fact, we could probably help each other.
    HI Gretchen, for some reason I didn't see your previous message to me! I just sent a friend request to Alic, and hopefully will have a chance to talk to her soon... Hope you are doing well!
    Gretchen,

    There may be a slight snag with your sister's registration on the site, as I can find no user named Alic on the site. And as to my attitude toward toward people that have actually been diagnosed with this horrible disease, you'll find a far different tone from me toward them. I'm still blunt, but only when something critical is slipping through the cracks. Ask a few of the caregivers around here -- no matter how much I may disagree with a caregiver, I am not going to let that caregivers' PALS suffer because I disagree with their caregiver on other things.

    PS -- I found your sister's user profile through backstairs means and sent her a friend request.
    Hi Gretchen, as they say in AA, "one day at a time"... I think as hard as it is to be a PALS, it must be doubly hard at times to watch and try to help as a CALS. Try to stay focused on today, and though we have to plan for tomorrow, let's not focus on them. Stay cooking and having fun with your sister. Is she online yet? I was in denial for a long time, just couldn't accept it, and on some levels I probably still haven't (Denial is a park in Alaska, oh wait, that's Denali). Have a good night.
    My e-mail address I'll send to you in a private message and you can give it to Alice. Or if you use Facebook we can communicate there. I won't be home till Saturday for receiving e-mails but can access Facebook. Sound like a plan? I hope you are doing well Dear one. ;)
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