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Gideon

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@gideon

My wife in last couple months having very hot ( red face) or very cold feeling( , She put the fan on and off al day and night I like to know if somebody have the same symptoms Gideon View
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  • Profile picture of Gideon

    Gideon replied to the topic Using immunosuppressant drugs to halt / slow down ALS progression in the forum Research Topics 4 months, 2 weeks ago

    totally agree

  • Profile picture of Gideon

    Gideon replied to the topic Can anyone give advice in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 5 months, 3 weeks ago

    This is Same as my wife

  • Profile picture of Gideon

    Gideon replied to the topic SUPPLEMENTS TO SLOW ALS PROGRESSION in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 9 months, 2 weeks ago

    you can buy it on TheSocialMedwork

  • Profile picture of Gideon

    Gideon replied to the topic SUPPLEMENTS TO SLOW ALS PROGRESSION in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 9 months, 2 weeks ago

    She taking all this supplements for 4 years
    just this year ALS symptoms getting more aggressive.

  • Profile picture of Gideon

    Gideon replied to the topic Update us on the research and trials you are in!! in the forum Research Topics 10 months ago

    https://thesocialmedwork.com/ketas-ibudilast ask your Dr for Prescription

  • Profile picture of Gideon

    Gideon posted a new activity comment 11 months, 3 weeks ago

    Dear Julie
    Thank you for your information, I am getting help from
    Health well Foundation ,For infusion in clinic.
    but the problem is Part D Through
    (Kelsey Car Advantage)
    I ask four company who do Home Infusion, All using part D
    for the own Pharmacy,( all in Tx), The total charge
    $14000.00 and I have to pay a 30% copay.
    $4200.00 for every…[Read more]

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  • Profile picture of Gideon

    Gideon replied to the topic Advice needed on Medicare covering radicava home infusions in the forum Living With ALS 11 months, 3 weeks ago

    Dear John
    Searchlight cover you until 65 years ,afther 65 thy don’t cover you
    Searchlight drop my wife when she reach 65(Please see the contract from Searchlight)P.S thy send us a letter notified us my wife determinate at 65 when she legible for Medicare

  • Profile picture of Gideon

    Gideon replied to the topic Advice needed on Medicare covering radicava home infusions in the forum Living With ALS 1 year ago

    Dear Marianne
    Thank you for your information, Home infusion company don’t budge. We have a advantage plan with part D, Home infusion copay is about 20% off $14000.00 for each infusion, This is a broken system, same medication in EU is only 570 Euro, I try to get someone to administrate ,but I can’t find anyone todo it.
    We need to fight to…[Read more]

  • Profile picture of Gideon

    Gideon replied to the topic Pain management and ALS in the forum A​ ​Forum​ ​for​ ​ALS ​Caregivers​ 1 year ago

    Dear Robert
    I wife taking Baclofen.4x a day, Gabapentin (300mgx3)three time a day, CBN+THC+CBD ( CBN 150mg, CBD 150mg, THC 150mg)Help with pain & neurological.

  • Profile picture of Gideon

    Gideon replied to the topic SUPPLEMENTS TO SLOW ALS PROGRESSION in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year ago

    My wife taking 500mg Tudca 2x a day, B complex, alpha lipoic acid, THC 50mg 2x day, Taurine 1000mg, NAC 600mg, Riluzole 150mg Radicava and more.
    This year my wife ALS turn aggressive afther slow progression for 4 years.
    My wife losing her voice, and can’t walk or stand any more. losing her memory.
    I praying for all of you.

  • Profile picture of Gideon

    Gideon replied to the topic Neck drop in the forum A​ ​Forum​ ​for​ ​ALS ​Caregivers​ 1 year, 2 months ago

    Here’s a resource: Brand: Headmaster

  • Profile picture of Gideon

    Gideon posted an update 1 year, 3 months ago

    My wife in last couple months having very hot ( red face) or very cold feeling( , She put the fan on and off al day and night
    I like to know if somebody have the same symptoms
    Gideon

  • Profile picture of Gideon

    Gideon replied to the topic Gabapentin, good or bad for ALS? in the forum Living With ALS 1 year, 3 months ago

    My wife taking Gabapentin 300mg x3 three  time a day for about two years.

    I try to reduce Gabapentin by 1/3, The consequence was my wife hands start shaking ,

    went back to original dose.

    P S if you taking pill for depressing ,  Do not taking it with Gabapentin

     

  • Profile picture of Gideon

    Gideon replied to the topic Vaccine on the horizon in the forum Coronavirus (COVID-19) and ALS 1 year, 6 months ago

    The COVID-19 mutated 1000 time .the new virus from UK is 70% more contagious , and today the new COVID-19 from Africa  is above 70% contagious. currently AstraZeneca and Pfizer conducting a new test with the current vaccine.

    A new data show people with allergy symptoms should be more cautious to the vaccine.

    From 200 million doses in 165…[Read more]

  • Profile picture of Gideon

    Gideon replied to the topic Leg jerks in the forum Living With ALS 1 year, 6 months ago

    Dear Wane

    Taking Baclofen don’t make you lose muscle strength.

    My wife taking it every four hour ,+ 900mg of Gabapeatin 3x a day .

    Side effects of baclofen :

    <b>Drowsiness</b>, <b>dizziness</b>, <b>weakness</b>, <b>tiredness</b>, <b>headache</b>, trouble sleeping, <b>nausea</b>, increased urination, or &…[Read more]

  • Profile picture of Kathryn F. Kennedy

    Kathryn F. Kennedy and Profile picture of GideonGideon are now friends 1 year, 9 months ago

  • Profile picture of Amanda

    Amanda and Profile picture of GideonGideon are now friends 1 year, 9 months ago

  • Profile picture of Gideon

    Gideon replied to the topic Respiratory onset? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 10 months ago

    My wife on  trilogy noninvasive ventilator and Oxygen most of the time especially at night .She constantly tearing from her eyes . She been using Restasis for years . Does anybody have the same problem? Please let me know.

     

  • Profile picture of Gideon

    Gideon replied to the topic What is the hardest thing being a Caregiver? in the forum A​ ​Forum​ ​for​ ​ALS ​Caregivers​ 1 year, 10 months ago

    For me is just watching my wife  decline every day is a struggle and  anxiety, looking at my wife beautiful face put on wife makeup just to help her to look beautiful , Is heartbreaking, and feel so helpless.And grandson who never been able to  known her.  Wake up every two hours to monitor her oxygen and ventilator. On  top of all fight with the…[Read more]

  • Profile picture of Gideon

    Gideon posted an update 1 year, 10 months ago

    My wife use to get Pressure Point Massage Therapy & Acupuncture after visiting Apple Clinic in Houston methodist hospital Dr Stanley Appel Neurologist and ALS specialist and ALS research , advice us not to do it. just do simple exercises he said .

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 1 year, 10 months ago

      This is interesting, Gideon. Was your wife getting these therapies in order to relieve pain? Or for something else?

      Why don’t you add this comment to the topic we have on Massage Therapy & Acupuncture? Here is the link: https://alsnewstoday.com/forums/forums/topic/massage-therapy-acupuncture-have-they-helped-your-als/

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