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Gideon

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@gideon

Anyone need a Relyvrio I have a box of 56 single does exp Nov 23, to give My wife stopped using it and we paid a good amount of money for it. If someone in Spring Tx needs it it is free to pick it up Please let me know View
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    Gideon posted an update 1 month, 2 weeks ago

    Anyone need a Relyvrio I have a box of 56 single does exp Nov 23, to give
    My wife stopped using it and we paid a good amount of money for it.
    If someone in Spring Tx needs it it is free to pick it up
    Please let me know

  • Profile picture of Gideon

    Gideon replied to the topic What questions do you have for your medical team? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 month, 3 weeks ago

    Hi Elizabeth

    Please what is an “E AP program?

    My wife stops using Relyvio after 2 weeks she doesn’t Tolerate it

  • Profile picture of Gideon

    Gideon replied to the topic First Symptoms in the forum Living With ALS 2 months, 2 weeks ago

    My Darling wife was first diagnosed with Parkinson’s disease, Her hands were shaking, lost her ability to smell and test, after 3 Months waiting for  appointment with Baylor ALS clinic ,We find out she has first stage of ALS .

  • Profile picture of Gideon

    Gideon replied to the topic Relyvrio in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 4 months, 1 week ago

    Help you if you do not reach 65 years old, over 65 they don’t help ( if you are sign in Medicare )

  • Profile picture of Gideon

    Gideon replied to the topic Relyvrio in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 4 months, 1 week ago

    My Wife taking Relyvrio for 14 days now, For the last 3 nights (2 AM) she has a Spasms in both of her legs ( she is completely bedbound and has broken ankles)
    And sometimes she has difficulty breathing,
    I called Amlylyx and told my doctor they all suspected Relyvrio and told me to stop giving it for one week.

    Does Das anyone have this problem?

  • Profile picture of Gideon

    Gideon replied to the topic Loose bowel movements in the forum Living With ALS 4 months, 1 week ago

    Greek yogurt mixed with Manuka Honey ( reduce inflation) and tea spoon of olive oil,

  • Profile picture of Gideon

    Gideon replied to the topic Relyvrio in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 4 months, 3 weeks ago

    I had a conversation today with an Amylyx reg a Capsule not advised to do
    They said it is not efficient enough because is need to be in liquid to absorb by the stomach

  • Profile picture of Gideon

    Gideon replied to the topic Relyvrio in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 4 months, 3 weeks ago

    Totally agree with you

  • Profile picture of Gideon

    Gideon replied to the topic How do you describe ALS to friends and family? in the forum Living With ALS 6 months, 1 week ago

    Unfortunately, no one understands what ALS is, when I explained ALS to people I said: is like a three-prong electric cable, The outside is the muscles cover by three neurons, when this neurons get short circuit thy in progress kill the muscles .
    It happens so many times that health care, or nurse, don’t have any knowledge what they doing.…[Read more]

  • Profile picture of Gideon

    Gideon replied to the topic Peptides in the forum Research Topics 6 months, 2 weeks ago

    https://clinicaltrials.gov/ct2/show/study/NCT04245709 The trial was ended on March 10
    Second Trial NO 3rd Trial

  • Profile picture of Gideon

    Gideon replied to the topic Peptides in the forum Research Topics 6 months, 2 weeks ago

    Dear Kim
    Why are you taking a drug Clenbuteral cost weight loss is illegal in US do to HAZARDOUS health effects
    When you have ALS your goal to gain weight! The fat tissue in the body protects your muscle
    Did you decide to take it on your own?

  • Profile picture of Gideon

    Gideon replied to the topic Here I Go Again in the forum Research Topics 6 months, 4 weeks ago

    We stop going to ALS clinic. My wife and I used to go to ALS clinic,

    We find out the the clinic uses my wife as a experimental for NP001, he the Dr refused to prescribe Radiciva for my wife, his opinion is not going to work  for ALS , I  do believe the the main reason is because he was funded by the pharmaceutical company he work for the trial o…[Read more]

  • Profile picture of Gideon

    Gideon replied to the topic Did you plan ahead for long-term care, or were you in denial? in the forum Living With ALS 7 months ago

    Dear David

    When my wife first diagnosed with Parkinson  on 2016.I try look for long term insurance, unfortunately I was denied. On 2017 we ask for  a second opinion and unfortunately my wife diagnosed with ALS,  still in I did not believe it we had a dream together, and our dream just lost in the fog,

    Unfortunately the health system in this co…[Read more]

  • Profile picture of Gideon

    Gideon and Profile picture of MaryConnollyMaryConnolly are now friends 7 months, 1 week ago

  • Profile picture of Gideon

    Gideon replied to the topic Burning Sensations in the forum Living With ALS 7 months, 2 weeks ago

    My wife’s have extremely hot and cold  feeling  all over her body ,we went to our  neurology, ALS clinic ,and no one know  the answer.

  • Profile picture of Gideon

    Gideon replied to the topic Caregivers, what are YOUR warning signs that you need to take a break? in the forum A​ ​Forum​ ​for​ ​ALS ​Caregivers​ 8 months ago

    I am caregiver for my wife for over 5 years.

    Yesterday was the first time that I had a nervous breakdown , the only thought I had is to end this situation by ending my own life, I am not sleeping as a human being ( 3 Hours a day maybe) Not getting help from her Brothers at all not monetary help or mental help, They never said or ask can we help …[Read more]

  • Profile picture of Gideon

    Gideon replied to the topic EXCESS MUCUS in the forum Living With ALS 9 months, 3 weeks ago

    Totally agree with you  my wife taking it 3 time a day

  • Profile picture of Gideon

    Gideon replied to the topic "How Do You Navigate Difficult Topics Like Mortality?" in the forum Living With ALS 10 months ago

    Hi

    My name is Gideon ,and I caregiver for My wife with ALS

    Anger : Ever hour
    Grief: every day
    Fear: every Moment
    Searching/Meaning  : all over the world try to find any want to answer
    Guilt: Do I do good enough,
    Anxiety: Every day dealing with the health insurance to provide my wife with right care

    Which they didn’t have any knowledge about…[Read more]

  • Profile picture of Gideon

    Gideon replied to the topic Using immunosuppressant drugs to halt / slow down ALS progression in the forum Research Topics 1 year, 3 months ago

    totally agree

  • Profile picture of Gideon

    Gideon replied to the topic Can anyone give advice in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 4 months ago

    This is Same as my wife

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