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notBrad notBrad is offline

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Showing Visitor Messages 1 to 10 of 18
  1. notBrad
    12-12-2015 02:44 PM - permalink
    Hi Riggs,

    Sorry to hear what you're going through. If your EMGs are clean then there's no way it's ALS. That's why I made my top priority getting one. You may want to get another one but mine were bad from the get go.

    Look at it this way, if it's not ALS then you're wasting that you could be treating and if it's then the only option is getting on riluzole and waiting it out...

    Best of luck with it and thank you for the thoughts!,
  2. Riggz10
    12-11-2015 10:30 AM - permalink
    Hey Brad,
    So I've followed your whole story. And mine sounds very similar. It all started back in March with weakness in forearm and legs. Had all the EMG's and was told by three neuros that I am fine. But fast forward to now the weakness in my right hand is getting to a point where I can barely use my fingers. Issues with my throat began in June with throat clearing and now my once deep voice is very strained, I have trouble swallowing, and I constantly feel myself slurring. I saw bunch of people on here also told you they didn't think you had ALS. I went from being an athlete to now not being able to run and I'm losing the use of my hands. My newest Dr. thinks it might be related to my lungs (sarcosidosis or churgs strauss) but I'm wondering if my breathing issues is not my asthma but rather ALS getting the best of my lungs. Best of luck my friend and my prayers are with you. Please advise if you have any insight. - Riggz
  3. notBrad
    09-14-2015 04:47 PM - permalink
    Thanks Kim,

    I agree re: approving trials, etc... sooner.

    So glad to hear your Dad is hanging in there and making the most of things!

    Wishing you and yours all the best,
  4. skipper66
    09-13-2015 08:38 PM - permalink
    Hi Brad,
    I just read one of your posts on your wall. I'm glad your progression is going slow. I saw where you are eligible for a clinical trial. That will be great. I wish they would approve alot of them sooner. My dad is hanging in there. He just turned 81 this past Friday. He is almost 3 1/2 years into his progression. I am so proud of him because he makes the best of each day. Take care, Kim
  5. notBrad
    08-14-2015 02:07 PM - permalink
    Hi Janelle,

    No you most definitely have NOT been a terrible friend. Clinic went very well and I just haven't posted anything about it since so many recently have had bad results and I didn't want to run the chance of makng them feel worse.

    Everyone agreed that I have a slow progression, breathing is unchanged since my first initial visit (about 100%) and except for some mild additional weakness in my wrists and a very very slight weakness in my feet I'm pretty good to go.

    Doc also said they're starting a trial for NP001 in about 6 months and I'd eligible for it.
  6. Green Queen
    08-14-2015 11:26 AM - permalink
    Green Queen
    Hey Brad,
    Thank you for the birthday wishes!
    Been thinking of you and clinic. Please tell me I haven't been a terrible friend and missed a thread?
    Everyone says clinic is tiring, I hope you are going ok with fatigue.
    Love to Vicky. And the muttleys.
    God bless, Janelle x
  7. notBrad
    07-28-2015 01:15 PM - permalink
    Thanks Janelle! I'll go run it down. Clinic is August 10th and will definitely report back in with any info.
  8. Green Queen
    07-27-2015 09:54 PM - permalink
    Green Queen
    Hey brad!
    Hope you going ok...
    I have posted something in the After 5 pub is open thread for you. It's blue, in case you have trouble finding it.
    When is your clinic? Please let me know how it goes.
    God bless, Janelle x
  9. optikey_julius
    07-07-2015 12:55 PM - permalink
    Thanks Brad. I'll check this out soon. Sorry for the delay getting back to you - I couldn't access this forum for the last few days. Don't know if it was just me.
  10. optikey_julius
    07-03-2015 05:30 PM - permalink
    Hi Brad - I've just checked out you web demo of the word sphere - very impressive!

    I'm thinking that the first obstacle to me putting together a web version of OptiKey (after my lack of web skills) is interfacing with an eye tracker. Do you have an eye tracking device? I've got a TheEyeTribe, a custom built GazeTracker device, and a Tobii EyeX. I'm sure one of them would lend itself to this experiment?

About Me

  • About notBrad
    What's your relationship with ALS/MND?
    I have been diagnosed with ALS.
    If diagnosed, when was the diagnosis?
    The coast of
    State or Province


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