Bulbar question

[starente15]

Is it possible for someone who is only experiencing breathing and voice problems (1 year now) to never progress to having limbs impacted?

 

[gooseberry]

I dont know. My husband ptesented with breathing issues and a paralyzed left diaphragm. He is having limb symptoms. He had some at diagnosis like cramping but now he has atrophy and loss of function.

 

[starente15]

My dad is still walking, driving, eating and speaking but his breathing is getting worse and causing anxiety. He's starting to use the bipap during the day now as well as while sleeping. Im not sure if this a sign it's progressing but still only in the diaphragm. It's such a helpless feeling to see this happen.

 

[gooseberry]

That was what made my husband sdiagnosis so hard since breathing onset is rare. He physically looked fine but couldnt breathe. That is changing for him now. We use a wheelchair wherever we go partly because of the breathing but also because his legs are going quickly. When I first lurked here back in June I seem to recall someone mentioning their pals walking around until they passed. Maybe for some that is how it goes. This disease is so individual at times. It just sucks seeing it happen.

 

[gooseberry]

P.s.they can give him an anti depressant or anti anxiety med for the breathing. Also if you dont have a trilogy ask for a.portable one. It looks the same just set up differently so as he is.watching tv or walking around or in the car he could have it for.breathing support.

 

[starente15]

We have the trilogy and it's on a rolling stand. Is there an even smaller version that's portable? I googled but couldn't find anything. He took his first.xanax yesterday but it didn't help much. He went to bed shortly after taking it so I thought maybe the effect had worn off.

 

[gooseberry]

Portable trilogy is sam emachine with different setttings. Xana xdidnt work for my husband. He ended up on lexipro and clonopin at bedtime. It improved his sleep and keeps things better during the day.

 

[jillinak]

I have bulbar onset. I sleep with the avap at night. use my dps (for my diaphragm pacemaker) during the day. the only problem I have right now is when I walk I need to use a walker, I have trouble with my left hand (no strength and I have a hard time grabbing anything) and drooling.

 

[4tloml]

It wasn't till 2 years after speech/swallowing problems that breathing problems really kicked in and his right hand began to atrophy (and now his left). His legs get stiff, but he's still stable on them. It seems to be anyone's guess how ALS will affect a single individual.

 

[ECpara]

My husband has bulbar onset. He was diagnosed nearly three years ago and he can still walk, drive, type, golf and mow on the riding lawn mower. His arms are becoming thin and weaker, but he's still fully independent. I only have to help him with his coat and pulling off his socks at this point. His diaphragm is fully affected now, however. He uses a biPap, suction machine and cough assist with regularity and he is becoming quite fatigued. We'll find out in January what his FVC is, I'm sure it has gotten quite low. I fully believe he will leave this earth still walking and typing on his computer!

 

[MaxEidswick]

>I fully believe he will leave this earth still walking and typing on his computer!



I just wish I could do it eating liverwurst & cheese bagels :-(