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Susan guarcello

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@sguarcelloyahoo-com

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    Susan guarcello replied to the topic Riluzole side effect in the forum Living With ALS 8 months ago

    I stopped taking Riluzole due to extreme weakness. This led to depression thinking I was progressing very rapidly. When I stopped taking it the weakness was much less I now go for Radicava infusions. I have no side effects.

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    Susan guarcello replied to the topic Have you changed your diet since being diagnosed with ALS? in the forum Living With ALS 8 months, 3 weeks ago

    Duane,do you have or have you had low cholesterol? I’m curious how many of us have low cholesterol.

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    Susan guarcello replied to the topic Have you changed your diet since being diagnosed with ALS? in the forum Living With ALS 8 months, 4 weeks ago

    I have always had Avery low total cholesterol 140. When I was diagnosed with ALS I read fat protects neurons. So i starting eating fats. I’m eating cheese and meat now. I don’t know if it helps my neurons. I do know that the protein helps. I have more energy when I eat more protein.

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    Susan guarcello replied to the topic Member Check In (pALS, caregivers, and other community members) in the forum Living With ALS 9 months ago

    I will start by saying Amanda your picture is so pretty. Yesterday was a good day for me. I received a check from ALS foundation to help with some improvements for me. I bought a chair that wasn’t supposed to come until February. It’s coming tomorrow. Ive been very uncomfortable so this will help a lot. I start Radicava next week. My insurance is…[Read more]

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    Susan guarcello replied to the topic Emergency Notification Device in the forum Mobility Aides, Assistive Technology and Medical Equipment 9 months, 2 weeks ago

    I have an Apple Watch. It senses if you fall and puts the ball in motion. It signals 911 and your emergency contacts. You can wear the watch in the shower or tub.

     

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    Susan guarcello replied to the topic Virtual Meeting in the forum ALS Awareness and Advocacy 11 months ago

    Amanda, i am so happy to hear i have a friend nearby. I hope i can call you friend. Thank you

    • Profile picture of Amanda
      Amanda replied 10 months, 4 weeks ago

      Susan, of course you can!

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    Susan guarcello replied to the topic Virtual Meeting in the forum ALS Awareness and Advocacy 11 months ago

    Bill, I live in SWFL. I will be joining the North Port meeting at the end of the month. Is that the one ou are referring to?

     

  • Profile picture of Susan guarcello

    Susan guarcello replied to the topic Virtual Meeting in the forum ALS Awareness and Advocacy 11 months ago

    I would be interested in a zoom meeting. I’m pretty flexible with time I’m   In eastern time zone.

     

     

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    Susan guarcello replied to the topic Living Longer with ALS in the forum Living With ALS 1 year ago

    Anthony, Mayo Clinic has a stem cell study. No placebo

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    Susan guarcello replied to the topic What do you take to help with cramps and facilitations? in the forum Living With ALS 1 year ago

    I take CBD and THC combo. In a 5 to 1 ratio. 10 mg CBD 2 mg THC   I take it sublingual. I live in FL. So you can obtain this legally. First you go to an MD that can refer you to the state to apply for a card. In the past I had excruciating cramps that lasted several minutes. Now my cramps are much less intense. Last very short period and less…[Read more]

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    Susan guarcello replied to the topic Are you in pain? in the forum Living With ALS 1 year ago

    In the past i got terrible craps everywhere. Lasting Avery long time lasting several minutes. I now take cannabis tincture. More CBD then THC. The cramps are less frequent,less painful and much shorter in duration.

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    Susan guarcello replied to the topic cold and swollen feet in the forum Living With ALS 1 year, 1 month ago

    I use the leg boots twice a day. Purchased them on Amazon. I use heating pad at night both are very helpful.

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    Susan guarcello became a registered member 1 year, 4 months ago

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 1 year, 4 months ago

      Hello Susan,

      Welcome to the forum! I am one of the forum moderators, as well as a person who is living with ALS: I was diagnosed in 2010.

      If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or…[Read more]

    • Profile picture of Amanda
      Amanda replied 1 year, 4 months ago

      Hello Susan, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]

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