Pee problems and ALS

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Hi guys,
I think you're exactly right, that it's a mental thing.

I know if I need to go, my mind starts racing through all the worse case scenarios (What if I can't find a wheelchair stall, what if I don't make it etc) and I freak myself out.
I can feel my breath get short and my pulse race. I got myself to a point where I was so nervous (and focused on me and my problems) that I didn't want to leave the house! Missed a couple of school concerts, my daughter's dance recital...(I'd swear right now, but no.)

What I've started doing is tellling myself, what's the worse thing to happpen? If your prepared with a "Go-Bag" like Cindy, aside from a little embarassment, everything will turn out fine. The city won't collapse and the world won't end. Basically, I'm trying to keep my damned ego in check!

I figure if I can psych myself out of a behaviour, I can probably psych myself back into a behaviour. I've been taking small trips out and built up from there. I feel fairly confident about going out now, though I sometimes get a pang of anxiety.
It's probably alot like a reformed smoker getting the 'urge to light up' every now and then.

My advice would be don't wait. As soon as you fell the need go, then find a washroom. It's not like before anymore...before ALS, I mean. We have a few obstacles to navigate now, so we need a bit of a headstart!
I would even try to go every hour to 90 minutes whether you feel the need or not. A bit of a proactive approach.

Good topic! Not the best thing to think about but very real!

Cheers!
 
Hey guys,

I don't think it is a mental thing because I have had that problem a year before my diagnoses, and at that time I didn't have any muscles weakness in my hand or feet.
I also remember that when I went for the first time to a Neurologist, one of the questions was
whether I have the bowel urgency or not. Now I am peeing every now and then so the problem is less but still sometimes I fly to the toilet but the hardest thing is when I am already in the toilet without any bowel urgency and out of a sudden I feel like I need to pee even before unzipping my trousers. I don't know it could be mental but it could also be that the nerve that gives the order to the muscles to open or to hold on a little is not 100% working.
 
I think the senstation is real and the urgency is due to general muscle weakness but once we know this, or have additional time-consuming tasks like chairs or uncooperative fingers to manage zippers, then the anxiety over that causes MORE urgency. The first think I do when in an unfamiliar setting is scope out where the bathroom is. Malls are the worst because around here they place the restrooms far apart, and there is always a long line.

But I have a question for anyone with bowel urgency. I'm looking for tips on how to handle "gassy" situations. Sometimes I run to the bathroom only to discover that it was just air. Other times I should have run because what I thought was air is now a mess. Other than watching my diet to avoid food that make my tummy rumble, I haven't found any other solutions. Cindy
 
Those concom catheters made all the difference in the world to my father (and actually, to me, the main caretaker). It would be nice if there were something like that for women. He was always telling me "I'm not incontinent, but I just can't get to the bathroom in time". Well, whether it's incontinence or not, the end result is still an accident. So, he's been wearing the catheters for about 9 months. It means I have to put one on him every morning, but it's been a huge help. If he has to go out, he just doesn't drink anything for a few hours before. If considering the catheters, I would get the non latex ones. Even though he never actually had a latex allergy, he does in that area of the body. Why mess with latex when there's an alternative? Constant contact with latex in that area gave him the allergy--symptoms were terrible.
 
Cindy - Have you ever tried those strips that you put on your tongue and they melt? I am pretty sure they are Gas-X. My son tried those because he has an incredible gas problem. He also started a process of elimination and found that he is pretty sure it is due to milk products.
 
I appreciated the link to the video clip, Lunarruna. It may well explain why attempts to reduce my husband's urinary frequency/urgency by considering it to be a part of his long term prostate problem has not solved anything. We'll check out the spastic bladder possibility & the meds.

Re: the 'bowel urgency' problem: My husband doesn't have any way of predicting whether it's merely a "gassy" situation, Cindy. These days he can't take a chance. The danger of a major clean-up always lurks. A routine helps but it's the gut that rules.
 
Thanks so much for the support. I was beginning to think I was the only one! Thanks for starting this thread, Omar. As for not knowing the difference between gas and the real thinkg, there are times I have taken the day off work, thinking I was up for diaharea all day.

Now that I have lots of doctors in my corner it is not such an issue explaining to my employer that I have yet another case of "intestinal flu." It also helps to regulate just the correct amount of roughage in my diet. too much and we're in trouble, too little and, well, you get the idea. Cindy
 
urgency

My friend had this same problem about 6 months into her diagnosis. She couldn't hold it and it was awful for her. Some of the time she didn't make it to the washroom. It lasted for about 2 months or so and then it abruptly stopped and she has been fine since. She thought it might have been from the baclofen, the muscle relaxers that relaxed her too much. I am glad that it has ended for her though.

Barb
 
Hi guys-

It could be what is described as " anticapatory incontinence" if I remember correctly it has something to do with the central nervous system kicking in before the nerves and muscles have time to respond, which in the case of ALS could make sense. Its crazy all the posts on here about the things that others say " You don't have ALS if you have urinary or cognitive problems" I really think this forum could change the diagnostic criteria for ALS.
To make light of things I always have to add some humor ( hopefully no-one finds it offensive) a PT I used to work with specialized in urinary incontinence and she made up a little jingle about it. " Does your bladder hang low- do you dribble when you go?" - to the tune of Do your ears hang low? tee hee ha ha. I thought it was funny, and so did all of her clients.
GNight- and prayers for all of you!
~Cindy
 
hello everyone

bladder problems could definatly be related to als. the reason being in umn desease spasms can effect the bladder. this is common in hsp/pls but doctors thought it was not a diognostic symptom in pls till recently when more and more pls patients complained of this,now the sp foundation have changed there information to include bladder problems in pls. as als includes umn involvement bladder problems could be related.
i have had on/off bladder urgency through out my illness, i get really bad spasms in my groin area sometimes and constantly feel the need to go to the toilet when i get them. rarely if i sneeze/cough i have incontinance,thankfully i am home most of the time. i do have very bad hip girdle weakness so maybe my bladder is weak due to the spasms.
i have just got a new raised toilet seat but dont like it ,it is cold hard plastic not like my comfy padded one,very uncomfortable.
take good care
caroline:-D
 
I have intermittent bladder and bowel problems, more frequent as time goes by. I do believe it is related to ALS, possibly due to UMN problems more so than LMN problems. I have the UMN dominant form of the disease. I don't think it is a mental problem.
 
My mother had an extreme amount of urinary urgency. There were days when she wanted on the bedside potty as many as 26 times. Sometimes she went and some times she didn't. The urge factor was believed to be attributed to nerve confusion resulting (unofficially) from the affects of ALS on her brain area related to the bladder. After she got the catherer, the urges no longer bothered her.
 
Urgency problems.

I have also been having urgency problems in the last month or so. Like many of you , everything I had read about ALS indicated that the sphincter muscles weren't involved. I don't seem to get the feeling I have to go, until I'm just busting to go, back teth floating, etc....I've sometimes dribbled a little before I could make it. Another thing to ask the neuro about at my appt in August. Bowel is the same way, but I'm costipated most of the time, so the problem isn't so bad, no 'accidents' at least.
 
I went through a similar urinary urgency phase. My neurologist asserted that it wasn't related to ALS and referred me to primary care. We ruled out an infection then she made me drink more liquids. Oddly enough more liquids eliminated problem.

One cause could be that you are dehydrated and the concentrated urine is an irritant causing the urgency. her rule was if the urine looks like apple juice you must drink more. The goal is lemonade color.

jim
 
My hubby went through the urinary urgency phase, his doctor prescribed FLOMAX, it took care of the problem right away.
 
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