[drvcolombo]

Hi out there. Can anyone shed light on how PLS affects incontinence? My Mom was diagnosed last month. Mostly her symptoms affect her legs, hands, and arms. She is exhausted most of the time. She has PT, accupunture and started Baclofen. Obviously, she cannot run, so when she has the urgency, there may be a problem. Also, it takes her some time to remove her clothes, as her legs are not so great. She is only 67, and we are trying to be as positive as we can. Is this something that is part of the disease? Are there treatments, meds, any minor surgical procedure for this? She did have 4 children, not sure if that means anything. I would appreciate any info here.

I would like to say THANK YOU--to all the wonderful people I have met on this site. I am not so great with the computer, but am trying navigate and learn more each day. I try to read about the lives of some of you. I am so impressed and in awe at how you guys are managing your lives. It is my hope that I learn from you, so that I may help my Mom. I already tell her--'live today as if tomorrow may not come". I think that is a great thought.

Sometimes, I don't want to get on this site, because I get sad. But I do get some comfort knowing that my family (and Mom) are not alone. I am inspired by many of you. If we can help each other in the slightest way, I know that I have done something good. Or someone out there has helped us.

THANK YOU.

[SteveS]

Hello. There is already a thread started here you may want to read. I know my wife is on meds as are a few others that may help with this issue. Thread can be found here;

incontinance

[drvcolombo]

Thank you. I am new to this, and not so great on the computer. Thanks for responding.

[♥ olly]

a big hello to both of you.
that is my thread and i can understand what you are going through.
my incontinance is caused by years of spasms and weakness.(pls 10yrs)
i get bladder spasms and on either side of the groin,my pelvic/hip girdle area is very weak.

to update on that thread,i was told meds or an opp procedure you can have is no good for me now.
meds may help in the early stages,they wont do the opp procedure as it wont work with it being caused by a progressive desease.
so,now i have to use incontinance pads. just small ones not the big nappies yet thank god,at 41yrs old it does not do anything for your confidence but i am at home 90% of the time.

drvcolombo....................it is great you are here to help your mum.
we are happy to help you with anything you need to know.

good to have you both here

[alice3]

Originally Posted by drvcolombo

Hi out there. Can anyone shed light on how PLS affects incontinence? My Mom was diagnosed last month. Mostly her symptoms affect her legs, hands, and arms. She is exhausted most of the time. She has PT, accupunture and started Baclofen. Obviously, she cannot run, so when she has the urgency, there may be a problem. Also, it takes her some time to remove her clothes, as her legs are not so great. She is only 67, and we are trying to be as positive as we can. Is this something that is part of the disease? Are there treatments, meds, any minor surgical procedure for this? She did have 4 children, not sure if that means anything. I would appreciate any info here.

I would like to say THANK YOU--to all the wonderful people I have met on this site. I am not so great with the computer, but am trying navigate and learn more each day. I try to read about the lives of some of you. I am so impressed and in awe at how you guys are managing your lives. It is my hope that I learn from you, so that I may help my Mom. I already tell her--'live today as if tomorrow may not come". I think that is a great thought.

Sometimes, I don't want to get on this site, because I get sad. But I do get some comfort knowing that my family (and Mom) are not alone. I am inspired by many of you. If we can help each other in the slightest way, I know that I have done something good. Or someone out there has helped us.

THANK YOU.

i am trainng my bladder--i time myself whwn i go to the bathroom--i go every two hours--do 100 kegel exercise a day i wiil be having a Urodynamics test done in december. this test is used to study the bladder and its function. the dr. said i need to take control of my bladder.schedule your urination. i am seeing a urogynecology. talk to your gyn doctor.
alice3:

[poc111]

I just saw your post and wanted to add to the replies from my own mortifying experience. I take oxybutinin which seems to help, but not enough to avoid problems. Like your mom, I can't move quickly and by far, the most helpful thing for me is timed voiding. I think someone mentioned this earlier, and I just want to reiterate its value. This seems so obvious, but I never figured it out. My urologist had to suggest it to me. Sometimes, they use botox injections, but I'm not to that point yet.

Good luck. I hope this helps.

[DBowman]

Hello! I have PLS and incontinence is a side effect for me. I ALWAYS wear some type of protection...pads of different lengths and weights. It's funny...when I wake up to pee and go back to bed, it's typical that I will have an "accident" and will have to change pads once I get to the bathroom-which is why I wear overnight weight protection when I sleep. Once I am up, I can control my bladder pretty well. I usually go pee every 2 hours. Sometimes I can control it longer. If I go out(work ,shopping) I will wear a short length(so it doesn't show under snug fitting pants) but fairly heavy weight pad. I also will watch my liquid/coffee intake before I run errands outside my home. Occasionally I'll have an uncontrolled bowel movement, but that's pretty rare...if you think you might need to poo, then do it as soon as you feel you have to to avoid the bowel problem...better safe than sorry. I am looking to buy a Kegel(I'm not sure if I spelled it right)...it's a simple device you put between your legs and squeeze to build up your bladder control muscles.

[gramps]

I had "overflow incontinence" 3 times & was sent to a neurourologist for evaluation. The doc said that the PLS & baclofen blew out the nerves that tell the bladder to empty, so my bladder was getting so full that it overflowed w urine.

The scary part: there is a very real possibility that this could have ruined both kidneys. I wonder how high a PLSer would rate on their kidney transplant list?

So, now I must self-cath every 3-4 hours so that urinse does not back up & ruin the kidneys.

Just a FYI for your consideration.

take care,
gramps

[DBowman]

Wow, I've never heard of that and didn't realize that such a thing can happen! I'm really sorry, Gramps!
Diane

[Russell123]

Originally Posted by gramps

I had "overflow incontinence" 3 times & was sent to a neurourologist for evaluation. The doc said that the PLS & baclofen blew out the nerves that tell the bladder to empty, so my bladder was getting so full that it overflowed w urine.

The scary part: there is a very real possibility that this could have ruined both kidneys. I wonder how high a PLSer would rate on their kidney transplant list?

So, now I must self-cath every 3-4 hours so that urinse does not back up & ruin the kidneys.

Just a FYI for your consideration.

take care,
gramps

How are you now? hope you will be better now

[♥ luvnmm]

drvcolumbo,
Good Morning from Richmond, VA! I have heard that the kegel exercises are a big help. I'm not sure how weak she is in the upper thigh, abdominal area, but if she could get kegel exerciser thingy (I have one but don't know exactly what it's called) and try to do that a couple of times a day, that might help some. Keep us posted!

[♥ Judith]

I am looking for a good washable underpad for my double bed and powerchair seat cushion. I have heard "Champion Washable Underpad" is a good one.
Any other suggestions?
I am also concerned that the underpad stay in place when I turn in bed.

Judith