Status
Not open for further replies.

BasicEd

New member
Joined
Jun 18, 2008
Messages
3
Reason
Loved one DX
Diagnosis
05/2008
Country
US
State
Pennsylvania
City
Mechanicsburg
My brother has been diagnosed with ALS and most likely the bulbar form. He has not had the feeding tube administered but he is becoming convinced that he needs it. My question is his loss of control of his bowl movements. He says that he has no ability to (pardon the expression) squeeze. Is this typical of Bulbar ALS? He uses enimas all of the time with varying degrees of success. He has lost about 70 lbs. starting at about 220 lbs.
 

Sammantha

Senior member
Joined
Aug 11, 2007
Messages
501
Country
Uni
State
NC
City
Newport
That is more typical of ALS not exactly of progressive bulbar palsy.... Although they are essentially the same disease its just a matter of progression. He needs to let his doctor know about this immediately. He will have control of holding on or letting go of his feces but he is losing abdominal muscle strength and pelvic muscle that is needed to push it out or get it down the intestines easier. It can be very painful and he may even feel exactly where its at in his abdomen and if it is moving along. There are rocking excersizes he can do to get it moving along. He really needs to consult with a specialist about it... Good luck, Sam
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Ed, I believe that is common with ALS for the reasons Sam stated ... loss of muscle tone, and losing the ability to "squeeze." It's not specific to bulbar ALS, but ALS does move out of the bulbar area into the rest of the body.

It is important for him to talk to his doctor about it ... fast! Sometimes the fecal matter can become impacted. The longer it's in the colon, the less moisture it has, and can become even harder to move. A doctor can advise him how to deal with it. Maybe stool softeners will help.

I am worried about the weight your brother has lost. That's a LOT ! He really needs to work at gaining some of it back. Hopefully, a feeding tube will help. Tell him to do everything he can to keep from losing more and maybe regaining some of it. Gaining weight will extend his life. That's what my neuro told me.

I'm so sorry your brother has this diagnosis. He is lucky to have you to lean on.
 
Status
Not open for further replies.
Top