Welcome wet bed.

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JLRNL

Active member
Joined
Apr 2, 2012
Messages
50
Reason
PALS
Diagnosis
09/2011
Country
US
State
Utah
City
Hurricane
Tonight after a long exhausting trip from Europe to the USA, I had a new happening while I slept. I know all about urinary urgency and getting to the bathroom on time problems. This time the urgency didn't come and I awakened to a wet bed. I know there are many opinions that say incontinence does not belong to ALS, yet I have seen many people reporting that it does occur. What is some of the members experience in this. Do I need to prepare for attends? Thanks
 
Having come to PLS via HSP, I have bowel and bladder involvement. From my understanding it is rare in PALS, but it is very common in HSP. (HSP is mostly a motor neuron disease, but it comes with extra collateral things that pure MND's do not.) Whether it comes from ALS or not, bladder control problems matter. That said, I try never to take just one incident of something happening as a doomful warning. If you do have the problem more in the future, shoot me a PM and I'll send you some bladder management info.

Also, whatever the cause, a trip the urologist is in order if you can go. Flaccid bladder is less dangerous than spastic bladder, but they are still the kings of practical problems in that area.
 
JRNL,
Flying is not for sissies especially trips across the pond...we just did one of those trips a couple of weeks ago and I really worried about Rog...it was exhausting!

Jen
 
I wouldn't worry too much about one random instance after an exhausting trip. If it happens again, I'd be a bit more concerned.

Do you take any of the meds for urgency?

When I'm sick with anything--my bladder leaks to the point I have no choice but to wear very thick pads. When I'm feeling okay, I can get by with a thin one.

When I was in the nursing home, I had to wear the Depends. I had no bladder control at all.

The cause of the problem needs to be determined before a viable solution can be offered.
 
I have frequent urges and have to get to the bathroom right away, or sit down and wait for the strong urge to pass enough to get to the bathroom.
I am taking Oxybutynin gel and it helps. I have chatted with PLS on different forums who do have the frequent and sudden urges.
Consensus is also that ALS is a pain free disease. What rubbish. For me anyway. I don't have bad pain all the time, but I do get dull aching pain in my thighs,calves,neck and left hand .

I use little little pads at home, but when I am going to be out for a while and may not be able to get to a bathroom I use thicker ones.
 
Bidets have been used for centuries around Asia and Europe. It is believed that dry, often coarse toilet paper is not a sufficient method for cleaning after using the toilet. It is suggested that a bio bidet can help ward off bacterial infections such as hemorrhoids or rashes because it is the more hygienic option.
 
Also, whatever the cause, a trip the urologist is in order if you can go. Flaccid bladder is less dangerous than spastic bladder, but they are still the kings of practical problems in that area.
 
Consensus is also that ALS is a pain free disease. What rubbish. For me anyway. I don't have bad pain all the time, but I do get dull aching pain in my thighs,calves,neck and left hand .
 
I am with you mame...there is pain with this also, I know my doc believes me and we are trying everthing under the sun to help, thank goodness he is open minded.
 
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