What do we do?

[Amanda81]

My mom was just diagnosed 12/28/12 and she seems to be progressing rather quickly. Just in this past month, she started with tingling and twitching in her hands and now she complains that her right hand is very weak. She is choking more. When do you decide to get a feeding tube? Also, her legs are much weaker than a month ago. She says she feels like she is carrying around extra weight. She complained yesterday of having a lot of trouble breathing. I just don't know what to do for her. Will rest help? Is there any physical therapy she could be doing? How do we know when to do what? Has anyone had a diaphram place maker put in? I'm just so lost... what should I do? Where do I start? Her doctor wants her to go to the ER b/c I said the magic words "trouble breathing." But it's not an emergency, it's ALS... he should know this. Her pulmonary functions test showed moderate restriction due to the weakness in her chest muscles. So I don't know what to do. I feel like a trip to the ER would be wasted. Help!

 

[vickim]

I think your dr is right. Trouble breathing is a medical emergency. Is she showing signs of labored breathing, are her nail beds blueish or her lips, is she ashen is color? I can't tell you what to do that is up to you or ask your mom if she feels she needs to see a dr. I wish you the best. Let us know.

 

[vickim]

UGH went to mod.

 

[Amanda81]

What does that mean? Mine or yours?

 

[ottawa girl]

Amanda,

Has your Mom been connected to an ALS clinic yet? If so, you can call them for immediate assistance. At least, that is how the clinic I attend is set up. If not, maybe her neurologist's office can expedite the referral.

I know this hard...

 

[Syekick]

If she doesn't have a BIPAP and your neuro isn't responding. Do what I did. I went to the ER. They evaluated my breathing sitting up (normal FVC) and it was pretty good. Then they evaluated it with me lying down. Very poor FVC. They stuck me in the hospital until my insurance company would provide the BIPAP. Four days. But I had a BIPAP at bedside and used it as I needed it. Got my BIPAP the morning of day 5 and went home. I've used it for nearly a year now.

 

[momap53]

Amanda, Vickie's post went to moderation. Something she said triggered it. It will show up later.

One of our members has detailed info about his experience with the diaphragm pacer. Check out Tmasters.

Physical therapy for PALS generally consists of gentle stretching and range of motion exercise. There is a Clinical Trial currently underway to study other exercise.

Fatigue is a big issue for many of us. Some take a small dose of Mestinon, some use Provigle .
Some of her fatigue is probably from her breathing issues. Another measurement used for obtaining BiPap is MIP (Maximum Inspiratory Pressure). Tell docs about fatigue, SOB with slight exertion and if she's no longer able to sleep
Lying flat. ( how many pillows she's sleeping with)

My ALS Clinic keeps up with my progress during quarterly visits. And makes equipment orders for me. If issues arise between visits I can contact them by phone or come in early if need be.

 

[notme]

HI

You've been given a lot of great advice in the previous posts. One thing I wanted to stress is that if she is very suddenly (within a day type thing) having more trouble breathing--it very well MIGHT be something other than the ALS.

One of the mistakes folks make is lumping everything that happens after those dreaded initials come to light. Those with ALS are still prone to all the usual suspects for sudden difficulty breathing:

Blood clots
pneumonia
bronchitis
collapsed lungs
congestive heart failure

please don't assume her breathing issues are ALS--unless the FVC confirms they are. With my crap lungs and issues, my shortness of breath was what I figured nothing--I was wrong. It was blood clots. Please be careful!

If she has a low FVC, as said already, she probably needs a bipap. If she's having issues with food--its likely she could use a PEG. It's best to get that procedure before it's absolutely necessary while the pal is as strong as possible. A Pal can still eat and drink with Peg.

I'd suggest always following the advice of a doctor - especially when this is all very new to your family. Best wishes.

 

[Rhmetz]

Just letting you know I had a diaphragm pacer and peg tube surgery done Jan 9 this year. Big improvement in sleep quality. I'm not on bi-pap yet and don't need the peg tube yet but it will be there when I do need it.