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littlered

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Joined
Mar 20, 2013
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52
Reason
Lost a loved one
Diagnosis
06/2012
Country
US
State
NV
City
Las Vegas
Brief re-inroduction, my dear friend was diagnosed with ALS in June of 2012. She is now full time in her PWC except for toilet transfers and sleeping. She is able to transfer by herself for the time being. Neither she or her CALS husband are “forum” people, but they are aware that I have been reading here for sometime and I frequently share what I’ve read as she has progressed.

PALS has started to have bladder issues and requested that I ask all of you if this sounds ALS related or not. She is unable to feel if her bladder is full and once the stream starts, she is unable to stop it. Are either of these an indication that the bladder muscles are beginning to weaken? She has a call into her clinic.
 
Can't say for sure, but I've noticed that a lot of times I won't realize I need to go until I rise up to transfer to a different chair. Then it's like if I don't go now I won't make it to the bathroom
 
Ditto on what Dalvin said.
 
My guy had some problems like those following his recent surgery. The urologist perscribed Flomax and told him to stay on it for the duration, as it will help out with havoc that ALS will wreck in the future.
 
The literature says the bladder is "not usually" directly affected by ALS, but I read a note saying that sometimes the bladder detrusor muscle can be indirectly affected by sitting so much.

Would be interesting to see how many PALS have this problem.

What Dalvin said applies to me, and I don't have ALS. When I sit for many hours, I won't realize I need to go--until I stand up--then I really NEED to go fast.
 
Santa Joe lost bladder control at least 4 months before he passed away. I know what the ALS pamphlets say - but..........

Debbie
 
My clinic docs say that urgent frequency is very common, as well as not being able to empty the bladder, or start a stream.
Most of the common ALS meds have "not being able to empty the bladder" as a side effect.
 
I feel that I need to pee at least once an hour. Makes me reluctant to go out to a movie or anywhere where potties are inconvenient. Maybe it's the liquid diet many of us are on. Alex
 
I just read some of your responses to her (more added as I type) and she said it did start when sitting became the norm, which falls in line with some of your comments. I'll mention to her about the med item. I'm not sure what she's taking.

Thank You from both of us!
 
Hi Little Red,
How awesome to have a friend like you that makes the effort to be involved and do some research. My emotional lability hits thinking on it. Friends are caregivers with room for filling so many different niches of aid.
Good for the Dr. visit and all that, here's my b.s. bladder summary:
Initially difficulty initiating and due to quite a few medications some burning. This was seven years ago while I had sever hip pain requiring a stick to walk yet running was not an issue. Prostatitis I thought. Pelvic floor dysfunction too with excruciating cramping at night. Luckily a good friend is a Urologist who sufferred from the same (female so obviously not prostatitis. Neither her nor my own prostate is enlarged; DOH!)
I lived with it. And then post ALS it became clear that spasticity (as I believe others have posted here) was the issue. For me I vascilate between urgency, microtrition and having a full bladder but not being able to have the bladder let go. When I drink more water I do fine enough but then again I am open with friends that I keep a urinal near because if I think pee I do pee. RIGHT NOW. DO not pass go and all that. Neurologist supports it being spasticity for me.
In your friend's case it may be something else and it make ebb and flow as mine does. I was recommended a catheter a year ago but until infections become a reoccurring bother I'll risk wetting my denim, thank you. blush of shame.
Again, your supportive diligence is admirable.
 
Additionally, Ditto what Dalvin shared. I do not know I have to go until I stand up or bend/transfer and then it is an urgent situation that I have little or not control of. Spaz that I have become.
 
The only time I don't have to pee, is when I am peein!:shock:
 
I wonder if the pelvic floor could be involved too.

Loss of all those abdominal and lower back muscles just has to affect bladder control.

Ditto how cool it is that you help your friend like this :)
 
every time im doing something or going somewhere. it hits me. o no not when it good. this als shit is very cold
 
Perhaps much like the lungs, which operate on their own but can be controlled, and therefore are affected, the bladder is something we can force (when it's working correctly), so it makes sense that it might be affected. The urologist's comment was that the Flomax would take care of the neurological changes that would affect bladder function latter on. I have no idea what experience he has with ALS, but we reported the medication during clinic and got a positive response.

Hubby was unable to go when he thought he needed to and then, like so many others here, had a sudden need with little warning and he had the burning problem. Onset of these problems was very sudden, so we checked for infection, but that was negative. Sitting was also impossible, which is a serious problem when you can't stand safely or at all! The urologist didn't subject him to a prostate exam (which would have been miserable at the time), but the Flomax resolved his problems almost immediately. Time will tell how long it lasts...
 
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