Recent content by ECpara

I haven't logged into this forum in a few months. It makes me too sad. But today when I finally did, I was doubly saddened to see that your father passed away, Kim. While the news is sad, know that he is in a better place and no longer suffering the daily downhill slide of ALS. That always...

When my husband passed his FVC was 18%, MIP 8%, MEP 20%.

Day by Day, I feel for you! Are you repositioning him because of choking and breathing difficulties? My husband's last two weeks were terrible at night, he could not get comfortable and ended up "sleeping" sitting up on our sofa (when he wasn't up choking). We tried umpteen pillows on the bed...

So sorry, Mojo. May you find peace knowing she is free of this dreadful disease. God bless you and your family. Nancy

So sorry for your loss, Grace. I rarely come on this forum anymore, it's too hard after losing my husband, too. But I try to keep up with those who pass. God bless you and your family. Find solace knowing he's free of this dreadful disease. Nancy

So sorry Kaye. Even knowing this was going to be the outcome, it's never easy. God bless you and your family. Find solace knowing he is finally free of this disease. Nancy

Thank you, Kim! It's been a long battle, but I honestly am glad he is free from this dreadful disease. This last month was SO HARD! He couldn't puke or cough but wanted to ......... thanks to having a diaphragm only operating at 6%. He was so sad all the time, broke my heart. He was also...

Cheryl, so sorry for your loss. Having just gone through this myself in the last week, I can relate to the whirlwind you are in. Sorry we have to share such sadness, but know you're not alone. Blessings to you! Nancy

My sweet Tom went to be with our Lord on Tuesday. His diaphragm couldn't hold up to an infection somewhere in his upper respiratory system. The doctors couldn't pinpoint it (lungs were clear) but they are thinking he had aspiration pneumonia in the deep recesses of his lungs. He suffered...

Only about 5% of ALS starts with twitching, pretty small odds for a very rare disease, and yes it would be all the time. And shoulder soreness is different from shoulders that are failing to move. ALS is not about feeling (sensory), it is about failing. EMG's pick up abnormalities long before...

You keep using the word "feel". In ALS there is no FEELING. Muscles just FAIL. You don't have ALS in any way, shape or form. Good luck, please move on.

Dents are not atrophy. Atrophy happens after a muscle starts to become weak and useless. Twitching means nothing. Everyone gets twitches. Only 5% of ALS cases begin with twitching, and then only in the muscle group that presents ALS weakness (not perceived but actual weakness or uselessness)...

I'm in such a quandary. Not sure what on earth to do for him. He is SO miserable, can barely respond to me, it takes too much energy. I wonder if he is dying? Should I admit him to the hospital for comfort? His stomach us so upset, prescription meds aren't working. He can't throw up but...

Wonderful Tripete! We recently took Tom to the zoo and Notre Dame campus, my son thoroughly enjoyed pushing his wheelchair, too! I think it brought us all together. Love your pictures!

Renting that scooter is crucial. When my husband was at the beginning of bulbar onset, we rented one in Disney World even though he could walk absolutely fine. His doctor was adamant, said it is imperative to conserve energy as that is what leads to more rapid progression. That road trip will...