Recent content by Patience2

Barbie I have a question. Our home health nurse doesn't know and I am waiting for the doctor to call me back. In the past 2 days, my husband's arms and chest appear to be swollen. His arms look hugh and fat. Could this be a result of CO2 because of his breathing?

Sadie, thanks for posting. We are coping pretty well. I have great support from friends, neighbors, family and church family. I usually browse because there are many many great ideas for things that we can use and try. Again, thank you

Barbie, thank you so much for posting to me. I haven't quite figured out how to post in ANY section. but I do browse and get awesome ideas that help us out. Everyday is different for us and I think I am coping pretty well. We have great support in friends, neighbors and our church family...

My husband Stephen has a g-tube and supplements his eating with that. We are up to 3 to 4 cans of Jevity a day. Although he can eat only about 10 to 12 bites for breakfast and about 10 bites for supper. He doesn't eat lunch. He also drinks Ensure for breakfast. When you say he is on a...

My temper is very short today or 2:30 am in the morning. You haven't offended me. I am searching for more answers. we had 5 opinions before we finally gave in and took their advice of living the next 90 to 120 days. All 5 of our neurologist HAVE heard of ALS progression this fast but have...

ok Sadiemae, are you a doctor? suppose you explain the fast decline. We have seen 3 of the top doctors in the country as far as Neurologists go, Money is certainly not a problem here, so we have flown them in here to see my husband and all of them have said, don't worry about the medical side...

So sorry for your husband's diagnosis Debbie. My husband was just diagnosed in July 2013 with symptoms starting in March 2013. His decline has been in his arms and legs and now breathing. He is still talking and eating without swallowing problems, but his prognosis is bad because of the...

We have found that small movements in arms and legs help with stiffness. My husband's muscles are wasting and continue to do so but we also continue to do range of motion exercises to help with the stiffness. We have also hired a message therapist that works with ALS patients. She basically...

Today we got the diagnosis of pneumonia. Not what we need at this time. We also were trained on the Hill-Rom Airway Clearance Vest. My husband was very anxious about it but decided to give it an honest try. he ended up saying that he felt much better after using it for the first treatment for...

Wow. No one can truly know except our Lord. Once he was diagnosed his doctor wanted him to visit the clinic monthly. Just by reading stories on this forum and comparing them to my husband, everyone else's decline is much slower. I mean, he walked into the doctors office on July 17th and by...

I am in Maumelle, Arkansas. Have you gotten the answers that you need? Some of the people that post on here are rude and to the point but don't let them get to you. My husband was diagnosed with ALS and Lyme disease on the same day - July 17th of this year. I might be able to give you help...

my husband recently had a CT scan and it showed Atelectasis in both lungs. His breathing was at 88% the day of diagnosis (july 17th) By August 19th it was down to 76%, Down to 47% on September 9th and now the CT scan shows this as of September 30th. We go back to the clinic on October 7th...

What is Bulbar? My husband's onset was a drop foot which began in March 2013 and now he is totally paralyzed with exception of fingers, neck and head and a little movement in his right leg.

Once my husband was diagnosed in July 2013, he was issued the Trilogy machine with no problems. His breathing has been on a rapid decline every since. He was given 90 days to live in July and so far this Trilogy has been the answer to restful and peaceful days and nights.

My husband's decline has been severe and so rapid that we are all overwhelmed. We had a CT scan of his lungs today and it revealed that the lower lobes are partially collapsed. This was such bad news that my husband just wanted to go back to bed. He is up everyday but with assistance of a...