Has anyone had their feeding tube replaced. I am very concerned because 6 months is up in March. They replace it at 6 months. I was not put under when they did the tube because my breathing was below 40. It was very painful not being under awake through it all. So how painful will the replacement be. Take care everyone. Let me know if anyone… Read more

I have been taking CBD oil for 2 years. It helps me sleep. Also muscle cramps. Just be careful I was taking too much and I started having diarrhea. Remember Dagmar I told you about it. That’s what I found out. So I only take at night. Take care everyone.

I went yesterday to the Doctor because I had a feeding tube on September 4th and the buttons were going to fall off but it didn’t. So I saw a PA and she cut them off. She also told us in 6 months you will get a call to re place the tube. We were never told that. She said it is not as bad as the first time. I said that was good because they did… Read more

Last Friday the 4th. I had a feeding tube put in. My advice to all don’t wait too long. My breathing has dropped below 50. They did not put me under and it was very painful. Now about gas. I have a lot of gas with the tube. I burb it and it helps. I am on a ventilator and before the tube I had some gas. Take care everyone

Hi, everyone I can’t wait too long. My last ALS visit in July the Dr.said I may only have a year left. Tomorrow I am going in for a feeding tube. I still can eat but my breathing has dropped. I am still mobile but my speech is bad. So if I can take AMX0035 to prolong my life that would be great. Bless y’all.

Well I had a meeting with a Doctor for the PEG. He gave 3 choices. One was a tube going down my nose. After that I couldn’t hear anything else. We left and I was crying. I told my husband that if they can’t just do the PEG then I am not getting anything. I want quality of life. Doctors just don’t understand what we have been through already.

My breathing has gone down below 50 and the ALS Doctor wants my to get the PEG. I have a appointment with the Doctor to do the surgery next Friday. So if anyone have any tips on this feeding tube. Thanks to everyone

<p style=”text-align: center;”>I took Rilozole for about 2 days. Got very dizzy and weak. No more for me.</p>

Hi Susan, I am 72 also. It started with my speech. I was  diagnosed last year. My husband and I retired 10 years ago and started cruising. We loved going. Did about 36 cruises. I am still mobile but get very tired. I am on a ventilator at night. My speech is very bad now. It’s all the Lords hands not mine. Take care. Kathy

Thank you Dr. Bedlack. I am 72 years old and was diagnosed with ALS last year. It started with my speech. I am still mobile but get very tired. No one in my family has had this. Please let me know anything else you are doing. I am going to a ALS clinic with Dr. Rivner. Respectively. Katherine Hooks.