One Year since Diagnosis- From a Wife and Caregiver

[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 were scheduled for an EMG/NCS when he suffered an Abdominal Aorta Aneurysm. He spent a month in the Hospital. 2 weeks after he came home he had his EMG/NCS and was diagnosed with Bulbar Onset ALS May 2016, nasty beast. He is now on a NIV. I wanted to say hello to others caring for their husband. Has anyone else experienced a lack of knowledge with Pulmonologists concerning PFT's with Bulbar? We find his Total Lung Capacity is affected more so than his FVC, in fact, we've both noticed a small improvement with his FVC since he's been on a NIV. Just wanted to hear other opinions of those in the trenches with this nasty beast! He has no voice, we had no time for a voice bank, it all happened so quick. Oh, how I miss his voice! He has a PEG, can't swallow, tongue has atrophied so much he can't touch his teeth with it anymore. Horrible secretions, can't seem to find a balance. Upper body muscle gone, relentless constipation issues................I'm sure you've all heard it! I found an article that gave me some comfort yesterday, wanted to share and get some feedback.......Hello and Love to all the other CALS!
https://www.aanem.org/News/Education/Science-News-Identifying-who-will-benefit-from-NIV

 

[lgelb]

Welcome, Terri, though sorry for what brings you here. The lack of pulmonology knowledge relative to ALS extends to all forms. But yes, NIV has definite benefit. I would not focus on the numbers as much as your husband feels -- glad that he got his AAA fixed. If you check the threads here using the search link up top, you will find a lot of good info on secretions and constipation.

Best,
Laurie

 

[soonerwife]

Welcome Terrik to the club that no one wants to be part of. Glad you found us.

My husband also has Bulbar Onset. Slurring July '14, Dx Oct 15. He also has no voice and can not eat. He has had tube since Sept '16. The secretions are one of his biggest issues at this time. He takes glyclopyrolate and just started Nuedexta about a week ago. They both help but they don't take care of it completely.

I completely agree ALS is a nasty beast.

 

[affected]

A warm welcome to you Terrik, so sorry you are here.

My husband was bulbar onset and he was rapid in progression. He refused bipap, so I can't talk much at all to that side of things. What I do know is that you are right, not many in the medical field know enough about this for our PALS. You will find a lot of help navigating this side of this here.

You can use the search function, but never feel you can't just ask a question and we will try to answer and help out. We are all here at different times and it can take a little time to get all the replies, but we will help out

 

[Firefighter58]

Hello Terrik, sorry to meet you here, I had constipation issues and found a product in the drug store called "CALM" twice a day and now problem now.