Recent content by Chrismarie

Yes it does help with bloating. Gas x and mylanta did nothing. Now he takes Baclofen once in mid afternoon and he takes 2 tums after every meal. This regimen doesn’t eliminate gas, but it really helps him overall.

Over 2 years into this disease, and one of my husband’s big problems has been abdominal cramping, bloating, diarrhea, constipation- you name it. Hospice has recommended everything you can name. Not much helped. Each day in mid-afternoon, he would get abdominal cramps and just feel awful. He...

What a blessing you are to so many pals and cals. Thank you for letting us travel with you. ❤️

So sorry about your son. So many of us look to your posts and experiences as we travel on. Thank you, Pete.. God be with you and family.

Pete, Karen, and all- thank you for sharing so much with us as we struggle on this als path. No one else has given as much help about what is coming. God bless you all.

Sorry for your troubles. My husband had no limb issues but he couldn’t breathe and was weakening. Would nod off frequently. It was awful. That was 2 years ago. It took a year to get als diagnosis which seems common. His sleep test showed 135 events per hour. A bipap saved him and still...

Pete, thank you for sharing the steps on the journey. It really helps all of us who travel there.

Thank you for continuing to share. So little is known and your detailed journey is helping so many of us. Bless you and family.

Be well Tim. My husband is hanging in. His breathing capacity is 30%, and he is on hospice. On his trilogy 20 hours a day, but he has no pain and can eat and walk short distances with walker. He takes riluzole and protein shakes. Also on lorazepam and morphine as needed, to help breathing...

Thank you, Mrs. Harris. We are in similar place. Yesterday my husband sat outside for first time in months. He enjoyed that a lot. Hope you and your dad have good days together. Thank you for sharing.

Thought I would give status on my husband for those few with this ALS type. After 10 months of tests, his final diagnosis was July 2017. He is weakening and hasn’t left house for several months. Just better since breathing is very tough. He is on trilogy 18 hours a day. A blessing that...

Thank you Pete! Your descriptions and information are really really helpful to others.

Oh Tim, We are so sorry to hear of your diagnosis. Your strength and exercises are keeping you going as well as you can. Stay strong! We went to clinic yesterday too. Husband's FVC is now 47, down from 53 in early July. We keep on, as you and all others do. Prayers and best wishes to you...

So sorry Tim to hear of continued uncertainty. Feels like you are in a battle and don't know the enemy. My husband has same symptoms as you. Only difficulty breathing with some tremors in limbs but nothing bulbar. He can walk until his breath fails, which is pretty quick. Bipap is his best...

Tim, this is such great news! Let's hope phrenic nerve damage will heal! My husband continues here with exercises and nutrition. Thanks for your suggestions. He has no bulbar symptoms and walks with falls, but is mostly limited because his breathing is very labored. He can hit 2000 on...