Husband was just diagnosed...I'm so worried and not sure how to help.

[DebbieRD]

Hi,

I am a PALS with Bulbar onset and a dietitian.
Have you husband see a speech therapist familiar with ALS and a dietitian. Learn more about what this choking is and is not, what to do when it occurs, and what foods and drinks can trigger this. Don't wait to see these clinicians. And doctors cover different aspects than these clinicians do. Perhaps keep a simple food diary now to assess what items might contribute to the coughing. Good luck sorting this through. I believe things will improve when you have more info and a team helping.

- Debbie

 

[LizGilchrist20]

I’m sorry about your man, I am going through a very similar situation. My guy was diagnosed in June as well. we are currently at a rehabilitation that is mediocre at best and I’m trying to get him home. He went to the er back in April bc he was struggling to breath they tested him for covid which of course came back negative and they called it a day. He’s had to have a tracheotomy and a peg placed in to receive feeding Tubes shortly after being admitted and it’s been a blur since Then. he ended up having 2 heart attacks Bc the carbon dioxide wasn’t properly filtered in his blood). Just don’t wait to long to get that second opinion. It effected him so quickly his breathing the weakness in his arms and legs. He is strong but ALS is a progressive disease and you guys will have to cope with it. It can effect people in different ways even the care taker. I read up that care takers are vulnerable to depression. Just make sure you don’t forget to take care of yourself. It’s easy to push your mental health to the back of your mind but remember that your husband needs you at your best so you can give him the best care. I had to fight to be with mine Bc of Covid they were trying to keep us apart and I understand but I have taken every precaution and I am at his side now and have been since he has his heart attacks. The best person to take care of your husband is you. You know him best and you being there to support him will help in his treatment. I’m sorry this is happening to you and I’m still learning too so if you don’t agree with me it’s okay to just keep scrolling. I just hope this can be a little helpful. Knowing that I wasn’t alone in this really helped me.