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Tedstehr Tedstehr is offline


Visitor Messages

Showing Visitor Messages 1 to 8 of 8
  1. Cherise77
    07-13-2018 02:52 PM - permalink
    Hi Ted,

    I was wondering if you could give me some guidance in the process of obtaining Edaravone here in Vancouver.

    I followed the steps on the righttotry website and emailed the Yoshino Neurology Clinic with my Dad’s diagnosis and info they required. The response back was for us or a representative to travel to the clinic.
    Did I do something wrong or how are Canadian’s getting drug shipped here?

    Also we contacted Nurse next door to find out about process of administering the drug once we receive it and they said the first time would have to be done in a doctor’s office. Did you do this as well? And if so which doctor will allow that to be done even though drug not approved in Canada yet?

    Thank you for you help. I don’t know where else to turn as the ALS clinic wasn’t much help with this. Although they did put my Dad’s name on list for the Canadian program of receiving the drug for free. The wait could be a bit they said as they don’t have date to receive the drug as of yet.
  2. KarenNWendyn
    02-21-2018 10:42 AM - permalink
    Hi Ted,
    I’m still walking but slowing down quite a bit. Yeh, it seems like all my muscles are gradually getting weaker. I can still pretty much do everything I’ve always done with the exception of outdoor recreational activities. So it sounds like you’re noticing some progression despite Radicava? Hopefully it’s less than it would be without it. Love your posts!
  3. Atsugi
    02-13-2018 11:21 PM - permalink
    ♥ Atsugi
    Hey, Ted. Thanks for thinking of me. You are really one of the bright lights of our community, and I always look forward to your posts.

    WDW will be amazingly beautiful with excellent weather. Warmer and more humid than you're used too, of course. Expect 83*. During the Easter Weekend, it will be mega-crowded. I used to work as an electrician when we were building EPCOT in 1982. Now, it is huuuuuuge and beautiful. You'll have a wonderful time.

    And if you get the chance, I'd love to meet you, perhaps at your resort. But, of course, you'll have your schedule very full, trying to get it all in during only two days.

    Now that I think on it, I recently compiled a spreadsheet of temps and humidity for Orlando in the past 3 years, including the days when storms and rain occurred. Turns out that April is the inflection point where temps go up significantly from the 1st to the 30th. What day are you coming down?

    Don't you have private message capability yet?
  4. KarenNWendyn
    11-10-2017 05:21 PM - permalink
    Yakima is a bit far from me. I’m in Southern Oregon, just north of the California border. If you’re ever down this way, I’d love to meet up with you.
    I see my neurologist in a few weeks to discuss meds.
  5. KarenNWendyn
    11-07-2017 01:24 AM - permalink
    Hi Ted,
    Definitely LMN dominant. Weakness in lower legs progressing and getting a little weakness in mouth muscles. However I’ve decided I’m not a rapid progressor at all (compared to others on this forum); maybe even a slow progression. Back in July, I wasn’t sure I’d still be walking at this point, but I am. Doc wants to start me on Riluzole. I have some reservations about Radicava. How are you?
  6. Schickie
    09-20-2017 11:30 AM - permalink
    Good day Ted
    My name is Glen and i'm from saskatchewan if possible can you e-mail the latest from Bruce Bishop. My e-mail address is (removed by Mod-sent via pm) Thanks Glen
  7. ShiftKicker
    09-18-2017 08:37 PM - permalink
    ♥ ShiftKicker
    Ted, good luck with your appointment tomorrow at GF Strong! I hope you get info on any studies in the works and are able to sign up for something.
    Take care.

  8. Atsugi
    09-09-2017 02:55 PM - permalink
    ♥ Atsugi
    Hi Ted. I expect to be right in the middle of the storm, full force and all. I've done it before.

About Me

  • About Tedstehr
    What's your relationship with ALS/MND?
    I have been diagnosed with ALS.
    If diagnosed, when was the diagnosis?
    New Westminster
    State or Province
    I love to laugh and have fun visiting friends
    Solution Consultant - present software to sell
    Old home renovation


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  • Last Activity: 11-26-2018 08:29 PM
  • Join Date: 08-25-2017


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