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I too was hesitant to get the feeding tube but my family pushed it so I went ahead and had it done. So glad I did. Makes nutrition much easier and getting the meds down was another issues that has been resolved with feeding tube. Hope you will change your mind. It really helps.

I would like to add one more thing. If she can still speak, I cannot, I suggest she record some messages for her family. Very important as the voice goes. I wish I had done this long ago. Best Wishes

Hi Sugarland, so sorry to hear this news. I too was diagnosed with Bulbar ALS at Houston Methodist, first at Sugarland then sent to main Houston Methodist Hospital where I underwent numerous tests to confirm the diagnosis. I have found the ALS Clinic to be most helpful. They get what I need...

Regarding Radicava. I also have a friend in my ALS Support group that has been on Radicava for 3 months now. Not too impressed either. I am not certain what to expect but my ALS Clinic at Houston Methodist Hospital said I would be put on the list. Seems no one gets in a hurry though. I...

Yes, Laurie. A big thank you for your knowledge and helpfulness. Battling this disease is terrifying and having some like you to communicate with is a God Send. Karen, my prayers and thoughts are with you. I will cross that same path at some point. Bulbar onset goes much faster than others...

Just read this post concerning Riluzol and what the nurse said. I started taking it about 3 months ago. I think it is important that we try to give hope where we can. I am one of those who hope it will slow the progression. I am lucky and have no side effects as some do. Best wishes to your...

I am newly diagnosed like your Mother and I have a daughter that has the same concerns. The hardest part for me is seeing my adult children struggle with my diagnosis. I wish your Mother the very best and tell her to fight on. That is about all we can do. I do recommend getting the proper...

Hi Brandi, I am newly diagnosed with Bulbar ALS in Sept. 2017. Started to have slow slurred speech in Oct. 2016. Speech is totally gone after 7 months. I just got the PEG in Nov. 2017 due to swallowing issues and wt. loss. Wt. is stable now. You are not alone in this struggle. I am an RN...