Status
Not open for further replies.

st123

Distinguished member
Joined
Feb 2, 2012
Messages
304
Reason
Lost a loved one
Country
US
State
Michigan
City
Mid
The doctor told us that 'respiratory onset' of ALS occurs in only 1-2% of cases. Just wondered if anyone else experienced breathing issues prior to the bulbar onset or any noticeable muscle weakness?
 
I myself have not experienced it, but I am friends with a former cALS whose husband was one of those few respiratory onset folks. She told me that the weakness spread to his arms, then the bulbar a bit at the end. His legs were still quite strong when he passed. He didn't get a PEG until about a month before he passed, and he had been adament about not wanting to go on the vent. His battle lasted about 2 years.
 
I had been diagnosed with COPD and extreme emphysema (basically meaning my lungs are gone) before I was diagnosed with MND and to find out that MND affects peoples breathing only added to the grief.

However I’ve only had the one really bad turn, luckily, and it felt much like I was drowning. Most people say I should have a fan on blow as it helps greatly, got to worth a go
 
My husband's symptoms started in his hand, but for the past year, everything seems to have "stalled" except his respiratory issues. He's on the bi-pap 3-4 hours during the day and all night. The decline in his respiration has been rapid and steady, speech is moderately impacted, swallowing is slow but he eats and drinks without choking (for the most part). His hands are still mobile (although less so), and his legs are fine. Strange disease, this is. At his request, he hasn't taken a breathing test since October 2011 - too tough mentally for him to hear the numbers.
 
My brother was diagnosed with ALS in october 2011. His symptoms started with the front half of his right foot and than slowly lost his left leg. He was given 3-5 years. 2months later he lost the feeling in all of his right leg. In Janruary he was given 6months to a year. His upper body was strong but than diagnosed with COPD and extreme emphysema. Within a couple weeks he started to lose his strength in his right hand. His respiratory problem is the worst thing that happened to him once being diagnosed with ALS. He always has an oxygen tank and struggles to breathe at times. He was a heavy smoker before he was diagnosed with COPD. We are trying to prevent him from going into depression. We is in gods hands. All we can do is take advantage of everyday he has. I hope your loved one does not go through this especially as fast as we did. My heart goes out to all patients and families. God Bless
 
Asaaidi- generally it isnt a good idea for a PALS to be on oxygen. It can make the respiratory issues worse. But maybe because of the COPD as well, its ok. Some doctors dont know about oxygen use with a PALS. Please look into this.
 
Snap my friend, sounds like you're pretty much describing me thriough those symptoms, no oxygen here yet, but my breathing is very bad on a night time, God bless you and your family
 
Hi sharlene... I didn't experienced with respiratory onset but i have some knowledge about this particular issue. Respiratory failure is one of the manifestation of the disease, although onset can be more harmful. ALS patients with respiratory onset have a poor prognosis when compared with bulbar or spinal forms. NIV should be proposed promptly because it improves the symptoms and survival time. Now a days respiratory onset ALS is uncommon, and it accounts for less than 3% of ALS cases. Thanks.
 
Last edited by a moderator:
Hi,

My husband was diagnosed with respiratory onset in 2008. He is now on the BiPap throughout the night, and on a sip-n-puff ventilator throughout the day. He cannot breathe while lying down. He also has lost almost all of his intentional movement capability. Still not on oxygen, even though he was a smoker for many years.

Hope this helps.
 
I was diagnosed with ALS in october 2011. Symptoms started with the front half of my right foot and than slowly lost my left leg. I was given 3-5 years. 2months later I lost the feeling in all of right leg. I don't whats going to happen to me. But I never depressed.
 
Last edited by a moderator:
Sharlene,

I don't know if my mom is "respiratory onset" or not--they told us bulbar. BUT, she has had the most difficulty with respiratory issues, right from the start. She cannot breathe lying flat on her back at all. She is on BiPAP at night (with supplemental oxygen). Still walking with walker and upper leg strength good. Fine motor in her hands still excellent. Very little swallowing difficulty with moderately slurred speech. Mostly, it has been her breathing that has been affected. I was unaware that this type was "rare."

Liz, do you know of any research or resources on the internet you could direct me to that would explain why oxygen is bad for PALS? I had not yet heard that and would like to look into it, since the doctor has prescribed it for my mom.
 
Thanks for sharing, all. This is such a ridiculously bizarre disease, isn't it. Though the neuro didn't tell us, I have read that the prognosis is not good with this presentation.

MP's CAL, oxygen is often bad for PALS with respiratory issues because, if they don't have the strength to exhale properly, they can experience CO2 buildup (poisoning).

My ALS clinic neuro has my Dad on oxygen with his bipap (a relatively small amount - 2 ltrs) based on overnight oxymetry tests. He uses his bipap every night and much of the day. Even at that, he has 'panic' moments when he feels he doesn't have enough air.
 
Good to know, Sharlene. I am just learning about this stuff, but if they have BiPAP at the same time as the oxygen, I would think that the BiPAP machine is "breathing for them" in a way that would prevent CO2 poisoning. She was having those types of symptoms BEFORE they put her on BiPAP and not now. My mom's ALS clinic neurologist also put her on a very small amount of oxygen, like your dad, so maybe I don't have to worry about it. So far, she only panics if a (well-meaning, but essentially ignorant) health care professional tries to make her lie on her back during an exam. It is very frightening to me as I am sure it is way more frightening to her.
 
MP Cals:Here is the reason

The CO2 can build up in the blood because of decreased ability to push it out because of decreased chest and diaphram muscles. A surprising number of doctors not seeing a lot of ALS patients are unaware of this. The CO2 should be monitored as well as oxygen if they give it to him.

And here is Joel C's Blog on it.
https://www.alsforums.com/forum/blogs/joelc/110-using-o2-als-patients.html
 
Status
Not open for further replies.
Back
Top