Griswald 1

My sister I believe is getting close to end stage. She has also started to have alot of anxiety due to air starvation. She suffers as well from frequent nausea which is causing her to loose weight. She has been Peg feeding for almost 2 years now and has fought nausea with an array of meds over this time. She just recently asked for her first Morphine to be administered and in my mind the morphine has only caused even more nausea. I think that her boys are going to have to try to get care for her over night as she is so afraid of being alone and not able to breathe. There seems to be no one in their area of Indiana that has knowledge of ALS and how to deal with their issues. She is 2 hours from U of Michigan and 3 hours from Indy...her hospice people would take over 45 minutes to arrive to help anyone with immediate issues. Does medicare pay for nursing in the home other than just visiting?

Hi-
I'm sad to read your story. I'm looking for some answers and perhaps you may have some insight. I have weakness in my legs and arms (feel like I've lost strength), but 2 EMGS(left leg/arm, right leg/arm) by 2 different DRS were normal. But I have also had neck tightness and fluctuating swallowing issues for a year or so. I was wondering if you knew about bulbar issues, I'm not even sure what to ask about it, other than I hope it's not related to this disease. and was wondering how it progresses?
take care, meli

My sister started with slurred speech 18 months ago, thinking is was a slight stroke. It progressed to where her speech is much worse, much saliva and chocking, along with loss of energy and stamina, so she went back to her neuro thinking she was still stroking. Yesterday at the U of Michigan she was diagnosed with ALS. We are just starting on this pathway so all of those who have walked before us will be of great help. I live in the Chicago area and she lives up by Ft Wayne Indiana. Is anyone out there close to either of these areas? Have any knowledge of experienced clinic ect in our areas.? I did see there is a clinic I believe in Indy but that is 3 hours from both of us.

Welcome Griswald 1!! I am very sorry to hear that you have a family member with ALS. My mom was diagnosed with ALS Sept 2009. You have found a wonderful site!!! The people here are super supportive and friendly. They always have a welcome shoulder to cry or lean on. You and your family are in my prayers. Love and hugs, Linda