Forum Replies Created

  • steve-gillan

    Member
    March 18, 2021 at 4:22 pm in reply to: Brain Waves as therapy for Neurological Diseases

    Just a note on the 40HZ gamma waves.  I have been playing the 40Hz for my wife for 3 weeks now.  I am working with a foreign scientific group on alternatives. This was their recommendation to me today;

    <b><i>We don’t agree with you by using 40 HZ gamma waves for ALS disease </i></b>as we have a biophysicist in our team who knows perfectly PEMF waves in therapeutic as he worked 20 years on that topic with bio-electricity. This “Gamma” frequency is use for recent traumas or wounds, or fractures (anti-inflammatory) . That high frequency is going to stress her more and make her tired depending of the amplitude used. <b><i>We will prefer “alpha waves” with a frequency between 8 and 12 Hz to de-stress her and also stimulates a slow regeneration.”</i></b>

    I am searching for anything….

  • I too just saw the article. I have had my wife on a product for 2 months now. This product works directly on the mitochondria. After seeing the article was able to speak with a Dr. knowledgeable with the concept. I have not been getting the volume needed due to the feeding tube and problems my wife has with absorption. I was told other ways to get it in her. I will let you know how she does.

  • steve-gillan

    Member
    September 25, 2020 at 4:39 pm in reply to: To voice bank or not voice bank

    If I may add to my original comment in support of voice banking; As thing go down hill and speech becomes worst it’s the little things the family misses, the daily comments like “I love you”,  “how was your day”, phases that I know my wife wants to say to us but tries to struggle through.  Her laugh, her concerns and the way she says it.  I truly miss the sound of her beautiful voice, the sweet and tender comments and the feelings that came along with that.  I think if she had the ability to express that in her voice it would make her feel better.  I also think she would use the app more. Just my opinion.

  • steve-gillan

    Member
    September 25, 2020 at 2:18 pm in reply to: To voice bank or not voice bank

    It’s one of my big mistakes not having my wife do it back 8 months ago. I thought about it and thought about it but did not want to put that on her that she was not going to be able to speak.  I put an app in a phone now but she’s very reluctant to use it. I truly think if it was her voice in the app it would be a different story. My mistake trying to protect my wife. I would strongly recommend doing it.

  • steve-gillan

    Member
    August 27, 2020 at 9:59 am in reply to: Use of Off label treatments.

    Hi Jane;  Mikes comments ”

    My wife has been taking Sodium Phenylbutyrate and Tudca since January. While Tudca is available on Amazon, you do need a script for Sodium Phenylbutyrate. She currently takes 6g of SP per day (12 500 mg tablets) along with 2G (4 500 mg capsules of Tudca) per day. Her neurologist at Mass General / Healey Center prescribed the SP. Insurance will not cover it and it is expensive, but you can get a discount through GoodRX. you need to go through a specialty pharmacy such as CVS Specialty. We have seen no side effects and while Kathy’s ALS was already far along, she has remained stable. Find a neurologist who will prescribe it. In our case, Kathy is fortunate to have the Director of the Healey Center as her neurologist, Dr. Merit Cudkowicz.

    Good luck!

  • steve-gillan

    Member
    August 26, 2020 at 12:17 pm in reply to: Use of Off label treatments.

    Dear Mike,

    I read your response, thank you.  I am curious on the dosage – I guess your doctor at MG gave you the dosage for the SP.  How was the dosage for Tudca determined.

  • steve-gillan

    Member
    August 20, 2020 at 2:08 pm in reply to: Use of Off label treatments.

    Thank you for the info Danielle,  I am familiar with the pending legislation in congress.  I joined the “Steven’s Nation” effort to try and push congress.

  • steve-gillan

    Member
    January 12, 2021 at 4:14 pm in reply to: Tips for adjusting to living with a PEG (feeding tube)

    Kathy,  my wife had a feeding tube placed in her stomach 2 months ago.  They did it just using a local. It was scary for her when they said they wouldn’t put her under but she did not feel anything.