Is this an ALS symptom or something else

[Just J]

I haven't updated you all but my husband was diagnosed with ALS last month (previous diagnosed was PLS). Anyway, we had breathing test done in early April that shows <70% FVC. This was the first breathing test so we have no idea how long it took him to get there. Our next f/u visit is in August.

Anyway, Mike just let me know a few minutes ago that his breathing has been quite labored lately, paritcularly when he is laying down. He said its hard to breath. We have an appt to visit our GP tomorrow and they may do an EKG to check his heart. Just wondering if this breathing problem is the ALS progressing or maybe something else? If EKG is ok tomorrow I guess I should contact the ALS clinic.

 

[Zaphoon]

Judie,

I'm sorry to hear of the change from PLS to ALS and sorrier, still, to learn of your husband's difficulty with breathing. Here's hoping things go well with the GP visit!

 

[halfin]

It is common for breathing weakness to be more noticeable while lying down. When you are upright, gravity assists with breathing by helping pull the diaphragm down. When you lie down you lose that assistance and your muscles have to do more work.

I hope his EKG is OK tomorrow -

 

[Danijela]

Agree with the above. Our neuro checks for weak caugh. Struggling to finish sentences due to laboured breathing is another symptom. Sorry about change in diagnosis.

 

[Just J]

So, everything went ok at the doctor. No heart issues, breathing problems are ALS symptoms (as I tried to tell my husband) but he was worried something may have gone wrong with his heart. I am no doctor so better that we had this checked out.

 

[brooksea]

At least he knows now. Thankful it was his heart!

 

[Blubear]

Ya, my dad cant stand to lay on his back, he just cannot breathe that way. It is just part of the ALS hun. So so sorry. Poor Mike!
HOW WAS THE RUN!?
Hugs, Kari

 

[JeffP]

hi just j sorry to hear about your husband .i was diagnosed aug 09 bulbar als .i also had a lung function test done it was around the same as your husband.i cant layflat on the bed i now have a hospital bed i can recline up a little just like halfin said .this is very common try lifting up his side of the bed if that can be done that will help tremendously i hope he is feeling ok

 

[Just J]

Jeff, we are looking into a hospital bed. We just spent over $3k on a sleep number bed a few months back. I guess our future guests will be mighty comfy 'cause this one's headed for the guest room once the hospital bed comes.

 

[Blubear]

My mom and dad LOVE the sleep number bed. My dad just uses special pillows to prop himself up. I think at the later stages we will be looking at a hospital bed too. But, knowing my dad he will wait until the very last second to have to resort to that. I have slept on it while cat sitting, it is wonderful!

 

[indigosd]

Judie, sorry that I missed your post but relieved to know that it turned out to not be cardiac. Web has all the same issues-just goes with it. When we need a hospital bed I am putting it in our living room/dining room area. It is in the CENTER of the house and next to the Master suite, a door that goes into the screen porch-next to the kitchen and the stairs that go to the 2nd story and the lower level that goes into the family room. Why? I do NOT want him isolated. I want him in the CENTER! :] I can also put a flat screen on the wall so he can still watch the news and the programs that he likes and will be able to see us no matter the time of the day. Sending you the beauty of the verdant Prairie this morning!

 

[Just J]

KM, I was actually thinking that as well. We have a lovely sun room with a wall of windows right off the kitchen (where I spend most of my time). So that is an option for placement of the hospital bed.