Susan guarcello

Hi Kathy, its a one month supply. I am looking into grants that can help. I will keep you posted.

Hi, I had a ALS clinic visit this past Tuesday. The Doctor there sent a RX to a compound pharmacy in my area. The pharmacy called me an hour later asked if I wanted the liquid or capsule form for AMX0035. The down side is the cost $550 for the liquid. $650 for the capsules. I live in south west Florida. I hope this helps others where to look.

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.

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

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.

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]

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.

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

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?

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

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

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]

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.

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