Frequent urination with ALS

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sharonm25

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Hello everyone,
I am new to the forum and have posted only once before. I gave a full background in my first post but will condense for this one. My mother was diagnosed with ALS in July 2006 at the age of 73. The disease has progressed rapidly because she is no longer able to walk and does not have very much mobility in either arms or hands even though she was still using a walker and her arms and hands at the time of diagnosis. Now, she is basically bedridden and completely dependent on others for all of her needs. Since her diagnosis she has had to urinate more frequently than is normal for her or any other person. Her doctor prescribed Ditropan 5mg. at bedtime. Although this has cut the number of times in half, she still has to go 2 or three times during the night. Due to her lack of mobility, she must be placed on a bedpan, so when she has to go during the night, everyone's sleep is disturbed including hers. She lives with my dad who is having his own health problems and my brother who is not always home. I was wondering if anyone else has experienced this problem and if there is a more effective medication for this problem? She even takes Ambien 10mg. to help her sleep but this does not keep her from waking up to urinate.

Thank you,
Sharon
 

Lisa Lane

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I am 47 with ALS and I too had problems with frequent urination. I tried every drug out there. They made my mouth so dry I could not swallow. I decided just to deal with it. My mobility is limited so I just decided to wear diapers. I just don't care. I found it very hard to try and get up at night and plus it was wearing me out. During the day I can still get up and use the restroom but at night I just let what happens happen. A bed pan is not comfortable. Also, I have found that when we are out in public restrooms are not as user friendly as I would hope. I need help and if it isn't a family style restroom that allows my husband to go in with me, I am out of luck. So, if I am wearing a diaper I am okay no matter what. It is just something I decided to except. I hope this helps.
Lisa
 

sharonm25

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Reply: Frequent Urination

Lisa,
Thank you for your response. Is there any brand that you would recommend? We have tried Depends and another off brand but both seem to be not very absorbent as they leak after one use. Maybe we are not buying the right thing.

Thanks again,
Sharon
 

joelc

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As silly as this may sound, if I drink a couple of large glasses of water late in the evening I don't have to get up during the night. If I don't, then I get up at least 2 to 3 times. If I drink coffee or wine it is more frequent. I know this does not sound feasible, but I have verified it many times. Defies logic? It was also OK if I did not eat or drink anything after 4:00 pm. (not really feasible though)
 

Barbie4

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Hello

Hi :

My friend who is only 41 has had problems with her bladder and frequency. We didn't think it was a part of the ALS, but now it sounds like it is.
Thanks for letting me know. I didn't think ALS was supposed to affect your bladder.

another lousy thing about this disease.

Barb :)
 

sharonm25

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Frequent Urination

We did not think it was related to ALS either. The handbook Living with ALS mentions urinary urgency like you cannot make it to the bathroom in time; however my mother's problem is frequency. She can hold her urine for a while because when my brother is not home they call my son who lives about 5 minutes from them. She is scared to drink a lot of fluids because she thinks she will have to urinate more often. Last night we tried something a little different. She has been taking her Ditropan, Ambien, and Xanax with other pills that she takes in the evening. Last night I had her take her evening meds with dinner and made her wait on the others till 10:00pm her usual bedtime. By 10:45 she was asleep and did not have to go until 5:30am. We are trying this again tonight and pray that it continues to be effective.

Sharon
 

char

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Sep 22, 2006
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could anyone tell me about Rilutek? I'm new to this.

My husband was Dx in July'06 and last Monday he was prescribed Rilutek. He's still going to work @ Lockheed everyday even though he has a brace on his lft. leg and lft. hand doesn't work well.
 

char

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Does anyone know if Rilutek slows down the progression of ALS?
 

ichortle

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May 2, 2006
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PALS
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CA
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Santa Monica
Rilutek

I've been taking Rilutek for about 3 months, and I can't tell whether it's doing anything. My ALS is still progressing, and it doesn't seem like the progression has slowed down.
 

Al

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They really don't know how it works, whether it slows it down or makes it plateau. Depending on what study you read they say it will prolong your life 3 months to a year or so. It doesn't work like an antibiotic where you feel better in a few days. You don't know if it is doing anything but most feel it is better to take it than not. AL.
 
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