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A Daughters Love

Active member
Oct 8, 2005
I have noticed my Mom has a very weak cough and her sneezing does not have much force behind it. She can still talk fine, although her volume is not as loud as it once was. Can anyone tell me if this means it is starting to go into her respiratory system? and if so, is this what happens in the later stages of the disease? Everything I read says it takes away your arms & legs first ( all mobility ) before it goes to your respiratory system. I am very confused as she can still walk a little bit and her arm strength is pretty good, but her trunk muscles ( this is how it started ) are totally shot, her back has no strength. If anyone can help I would appreciate it. I just need to know for sure!
Thank you,
Hi Michelle. ALS doesn't go to your respiratory system usually. What it does do is weaken the chest and diaphram muscles that control your breathing. This makes it harder to breathe especially when reclined or laying down. Some like myself need a Bipap machine to help them breathe at night. Has your mom had a pulmonary function test lately?
That would be an indicator of what is going on with her breathing. Once again I would have to say that we are all different and some of her symptoms are the usual but some may not be. Hope this helps Take care. Al.
The respiratory system is affected by the ALS. The intercostal muscles and the diaphragm usually get affected when the arms/shoulders are affected by the ALS. That is why some of the PALS opt for the non-invasive positive pressure ventilation like the BIPAP or get a tracheotomy and a ventilator. Sounds like your loved one with ALS needs a thorough check up of her respiratory status at the ALS clinic that you deal with!
Below are links to 5 separate slide educational presentations on the respiratory system and problems/symptoms /treatments in neuromuscular and spices cord injuries. If you follow the slides they should help you understand what is happening to your PALS and anticipate what to do next and understand what the doctor orders.
I have been using the BIPAP for 5 years and the lung volume recruitment (breath stacking exercises) for 4 years, which has helped me tremendously!


Patricia Seguin-Tremblay,
Ontario, Canada
P.A.L.S. since 1998
P.A.L.S. (Person with Amyotrophic Lateral Sclerosis)
Tough times never last, tough people do. -Robert Schuller
cough assist

Patsy or Al - Do you know of anyone using the cough assist? Is is something that can easily be used in the home by the caregiver? Is is really effective? Thanks, Pat
Michele, during the process of testing to find out what was wrong with me they did a
pulmonary function test and found I had 70% of my normal Lung capacity. That was over 2 years ago. At that time I had no upper body or arm problems with the ALS, only lower legs and foot involvement, yet it had already affected my diaphragm and breathing.

Since that time the ALS has spread to the upper body and the arms and I have noticed a decrease in the amount of force I have available when I cough. I have used a Bi-pap at night for over 2 years and it helps me sleep a lot better.

All cases of ALS are different in their symptoms and rate of movement, so what happens to one of us may not happen to another. I hope my experiences will help you somehow. It sounds like she needs to follow up with a pulmonary function test to verify what is actually going on with her.
Hadn't seen that, thanks for the link.
Yes, thanks CJ! I'd always imagined it was some kind of suction thing you stick down the throat. I bet a lot of folks are relieved to see that demonstration.
Thanks Jimercat for the link. Helped to watch it. My mom has progressed with sudden respiratory distress. She is in the MICU. Will be trached today to tomorrow. Will be bringing her home on a vent. Did not know whether or not it would be helpful to use on a trach or not. Pat
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