Recent content by terrik

I understand about rules:) I just could not find anywhere in the FAQ not to post links, especially helpful links. I have read them all, perhaps I missed that. Do you know where that rule is? Sorry about complaining about bad day, my husband knows those better than I do! for sure! Hope you...

seems we can never get a balance with the horrible secretions. I should take stock in paper towels, it's unreal the amount he uses! I hate this so very much! My husband seems to think we should stay with what we have for about the same reason, we don't want the cmn changed and then he can't...

I had never heard of it either but we have a mobile doctor here and it was suggested to us. I am thankful that we found them, I can't remember doctors coming to homes since my grandmother's time.:) Thank you for that point, my husband is tolerating this formula fine now. my only issue is the...

I have his GP coming to the house today to give him a Pneumonia shot, so I will ask to start the process for the pwc. Thank you again, I hate this beast too and agree that no one should have to endure this:* right there with you! Is Isosource better nutrition, perhaps I need to check into that...

PS-My husband is on Tussin to thin secretions when needed from the acetylcysteine thickening up mucus plugs ( he uses that at night before bed). he is also on glycopyrrolate, transderm scop patches, duoneb during the day and when needed, atropine under the tongue. we don't use that much, it has...

My husband uses a nasal mask, we and the therapists are aware the air escapes but he just can't use a full facial mask. We are one year in, perhaps as this beast progresses, things will change. He has said no to trach. I'm glad to hear your husband is still walking some! And still texting...

Hello:) Just wanted you to know how encouraged I am that you are here! I have been so lost at times with this nasty beast! Is your husband on a NIV? My husband was referred to hospice in March and I don't think a day has gone by this past year without my crying. I think they were too quick...

hello, wanted to say hi to you and warm hugs! My husband has Bulbar onset and he did gain some weight back after the PEG was placed! Here if you need me!

Thank you Affected:) I posted a new thread under CALS. Not tech savvy, but your instructions were wonderful. Love and Hugs to you! terrik

Hello, I'm TerriK, Wife and Caregiver of my Husband diagnosed with Bulbar onset ALS one year ago. He started with syrupy speech in November 2015 and muscle atrophy in his upper body. After numerous tests, MRI's, Blood work, Doppler.........Visits to Neurologists, ENT's, GP.......etc.....we...

Hello:) I posted in response today to Jocelyn8 and my post has not shown up. I'm not tech savvy:) perhaps you could be so kind as to let me know if I did something incorrect or does it take time to show up? It showed the screen that quickly said your post has been .......I assumed it was...

Hi, new here:) Wife and Caregiver to wonderful Husband, diagnosed 5/2016 Bulbar. He is on NIV and his FVC is good.........not quite to <50 yet, but we've noticed with his, it's not his FVC but his TLC (total lung capacity) don't know if anyone has heard of that but thought I'd add that comment...

Hello Everyone:) New member here, I was torn between clicking Caregiver or Family member of a person diagnosed with ALS. I'm the Wife and Caregiver of my Husband, diagnosed with Bulbar onset ALS May 2016. My Husband starting slurring his speech in Nov 2015 and was thought to have suffered a...

Hello Everyone:) New member here, I was torn between clicking Caregiver or Family member of a person diagnosed with ALS. I'm the Wife and Caregiver of my Husband, diagnosed with Bulbar onset ALS May 2016. My Husband starting slurring his speech in Nov 2015 and was thought to have suffered a...