ALS and chest congestion

[soonerwife]

I am completely new to this and hope this is the right place to post.

My husband was diagnosed with Bulbar Onset ALS in October 2015. He has been doing ok so far. Although he did have one night early last week that he woke up several times because he felt as if he couldn't exhale. They are getting him set up with the Trilogy machine when we go in to the office on Wednesday.

He also has to eat more slowly so that he doesn't get choked on food and is being fitted for braces on his legs on Wednesday as well. He has weakness in his ankle area and some drop foot.

A few days ago, he began having a bad case of seasonal allergies. It seems to have moved to his chest. Should we be concerned? He isn't running a fever but I know him being sick can be dangerous.He has an appointment at the MDA Clinic in 2 days. Do they address issues like this or is something that we need to go see his primary care physician for?

Any help you can give me would be greatly appreciated.

 

[Nikki J]

Err on the side of caution. Go to your pcp tomorrow. If he is struggling even a tiny bit go to ed tonight. I just lost my sister to a cold. Her breathing was very compromised anyway but she was doing ok until this. If he is having swallowing issues he may be having silent aspiration too so aspiration pneumonia is a possibility. Sorry to be blunt but please be careful

 

[affected]

Definitely get it checked NOW.

Pneumonias hit fast, and often there is no temperature at first. That temp can soar in a very short time. As Nikki says, err on the side of caution.

 

[swalker]

I was in a similar situation. I waited 3 weeks to see my regular doctor.

That was a mistake. It was a big mistake. It was a mistake that could have cost me my life.

I have been scolded by every doctor that learned of my behaviour.

If he is a bit congested, perhaps it can wait until tomorrow.

If he has any distress at all, go to the emergency room RIGHT NOW.

It might be an overreaction. But, we need to overreact rather than underreact in these situations.

Don't be like me. I have learned my lesson and was very fortunate to not pay a high price.

Steve

 

[soonerwife]

Thank you so much for your replies. I will be calling as soon as they open. It's hard to know when to get super concerned. I'm sure I drive him crazy! He isn't having a hard time breathing, just super congested. It sounds like he could benefit from a breathing treatment if that makes sense?

 

[Nikki J]

Good luck. Hopefully he will be fine. It pays to be supercautious with breathing issues, choking swallowing issues, and fall prevention. Those are things that can take us before our time

 

[affected]

soonerwife what happened with your husbands chest congestion?

 

[soonerwife]

He went to the PCP the next day. They gave him antibiotics and cough medicine with codeine. His Neurologist had a chest x-ray done as well. Luckily he didn't have pneumonia. He wasn't super happy that I insisted he be seen and have a chest x-ray but better safe than sorry. Thanks so much for what you all do on this site!

 

[affected]

So glad it got caught early and treated.
Steve is a great example of why it was wise to be thoroughly checked and treated early - your hubby doesn't know that he could have ended up very ill if you hadn't insisted.

But you don't have to tell him that, you can just tuck it away in your heart knowing that you did the right thing xx

 

[lgelb]

Why was he given antibiotics then?

 

[scaredwifetx]

Sooner wife, I lived in Dallas now but lived in Cleveland for several years and my mother's best friend Alice has lived the for over 60 years. Welcome to the forum. There are so many supporting and helpful friends here. I am glad your husband is ok. Things are so rough in the beginning. My husband was diagnosed in August and I still com here with so many questions.

 

[soonerwife]

lgelb- Not sure why he was given antibiotics. I didn't go to the PCP with him. He saw the physicians assistant who he wasn't impressed with. I asked what she said about him and he said nothing really, she was kind of crazy, lol! Won't be seeing her again. He still has a cough which he has had since in was diagnosed in October 2015 but at least his chest sounds clear now which is why I was worried. He is on allergy meds which seem to help sometimes. The neurologist office did the chest x-ray and determined no pneumonia.

scaredwifetx - You lived in Cleveland, Oklahoma? My husband has been here all his 52 years. I have been here for 20 years. What is Alice's last name?

My husband was seen at the new Tulsa MDA Clinic last Wednesday which I believe would be a great resource. The problem is my husband is pretty stubborn and doesn't like to go to the dr at all. For him seeing multiple specialists is sheer torture. I am trying to decide how to get him the best care possible and still honor his wishes. Any advice?

I am so thankful for everyone on this site! I already find myself depending on your advice. So thankful to have this resource available. Thanks for caring!

 

[affected]

sooner it is a fine line at times.

I think that if you can have some open and honest discussions with you husband now, it will help as things progress.

Has he done POA, living will, discussed any funeral wishes?

Hard discussions but these things really become a foundation for you.

Eg if you know what his wishes are so far as interventions, then it helps you work through any situation that comes up.

Often seeing the specialties early in the disease and getting all the information, strategies and equipment is good. As things progress many PALS elect not to continue attending clinics as it is more effort than benefit.

 

[soonerwife]

Yeah, we aren't really there yet.

I have the Durable Power of Attorney laying on my desk at work. He is going to come by my office when I get back to work. I have been off for a week and a half. My husband's mother passed away and was buried yesterday.

We have not done a living will or discussed funeral wishes. Kind of seems like I am preparing for him to die if I ask him about funeral arrangements.

What does a living will do for us? I really haven't gotten all this figured out yet.

I got the Durable Power of Attorney because I realized one day when I had to call about his retirement that he isn't going to be able to give permission for anyone to speak with me about his affairs much longer. He has Bulbar onset.

Any advice you can give is greatly appreciated.

 

[gooseberry]

You might want to ask about a cough assist machine. These things really ppen up the lungs and help you get the crud out. Not pretty but very effective.

Health care surrogate/living well assigns someone to make your oals decisions health care wise if he is unable. It also states what he would like done. An advanced directive is more specific and must be signed by a doctor in our area. A will is important because depending where you live it may be the way to transfer assets to you. In FL, if things are jointly titled, both names on bank accounts, etc you do not have to probare the will. In your state you should find out the protocol. Probate can take up to a year and your accounts can be frozen.

The other thing I would do is make a list of all the accounts, phone numbers or websites, etc It makes things much easier. You will need your original marriage license, birth certificates, and social security cards to do many things. Death certificates are a must. In FL you need some with and without cauee of death.

Talk or write about funeral wishes. We had a general plan, cremated, no viewing, burial in a national cemetary. The rest was up to me.