decline

I went for my clinic visit a couple weeks ago and the neurologist suggested hospice. I've lost 18 lbs in 3 months. I knew I lost some weight but not that much. My FVC was 39, down from 41 three months ago. Both my husband question the accuracy of this reading as we've both noticed a...

This is my first time posting, so please feel free to advise if I’m not posting in the correct spot. My mom was diagnosed in September and given an functional rating of 43 after her first clinic that same month. Last week, we went to her second clinic and her rating dropped to 28. Her lungs are...

Good morning all, It’s a little advise I’m seeking as all the doc’s I’ve seen and test done have drawn a blank, but the fact remains, my condition is getting worst? I'm not sure what I have but I'm thinking its got to be a nero issue as everything else it coming back as clear, but I'm still...

Hey guys, I am not there yet but I feel like my PALS is on his last decline. What things do I need to make sure I take care of afterwards?

I'm afraid we are getting closer to the end. Since Hurricane Irma, my dad has just gone downhill extremely quickly. He can no longer hold his head up. We have him in hospice and he is on the "cocktail." These past 2 weeks he has begun sleeping constantly, waking up for brief moments. (This...

So, my husband has just recently agreed to a PEG placement, and we are actually scheduled for it 12/5th. He has no problems chewing, swallowing or talking at the present time. However, his respiratory state has continued with a predictable decline. I have read here on the forum that PEG...

I have clinic soon and I know the issue of a baclofen pump is going to come up again. I believe they offer the pump to all with PLS, but I believe it is more helpful to some than others. So I’m doing my research to find the ideal model for a successful pump installation. Will you take a...

I have clinic soon and I know the issue of a baclofen pump is going to come up again. I believe they offer the pump to all with PLS, but I believe it is more helpful to some than others. So I’m doing my research to find the ideal model for a successful pump installation. Will you take a...

Yesterday I had my first fall as a fairly new PALS. Here's a bit of background and the story. My passion is playing the bassoon with a very good orchestra. I know my bassoon days are numbered, thanks to ALS, and I've arranged to have a backup player assist me with some of the pieces to help...

Hi all, Thank you in advance for taking the time to read this. I am going to do my best to keep this succinct. Any help and feedback is tremendously appreciated. Here is what's going on: In 2011 I lost my mother to ALS. In 2009 my grandmother passed away from MS. I am 26 years old, and...