Re: Increased urge to urinate at night

[Guest guest]

Elaine, have you tested for a urinary tract infection? That can include an

increased urge to urinate with frequency. Personally I would want to rule that

out so you can both get a better night's sleep if that is what is causing this.

All the best.

>

> Hi

>

> Thank you for your suggestion and the link.

>

> I have discussed these condom catheters with our doctor but at this stage we

> do not think they are appropriate for Jim yet.

>

> There seems to be something happening in his brain that gives him the urge

> to go to the bathroom and nothing can divert him from this. He is like a

> robot that won't stop until he has completed the " set of instructions " .

>

> At this stage, even if he were wearing the condom catheter, he would still

> be driven by this strong urge to make the trip to the bathroom and my sleep

> would still be disturbed as I need to accompany him on this 'journey'.

>

> As we walk to the bathroom, he pulls at his penis and his Depends pants and

> we are concerned that he would just pull the condom catheter until it came

> off and then I would have a worse mess to clean up J

>

> He used to be on 25 mg of Seroquel at night but the urge to urinate was

> stronger than the sedating effect of the Seroquel.

>

> I withdrew the Seroquel because it made him like a sack of potatoes and that

> made the trip to the bathroom so much more difficult, even with a

> wheelchair.

>

> I am reluctant to increase the Seroquel dose because even the 25 mg made him

> groggy in the daylight as well.

>

> At least without the Seroquel, he walks quite readily with me and we can be

> back in bed within 10 minutes.

>

> I am amazed at the one-eyed determination of the brain to drive him through

> this 'programmed sequence' - nothing seems to be able to deter him from

> doing it. Jim has no recollection the next day that he has had so many trips

> to the bathroom.

>

> Desmopressin worked for a couple of nights (on the maximum dose of 400 mcg)

> but it seems to have stopped working now.

>

> I am hoping that this will be a stage that soon passes and that these strong

> urges will stop.

>

> I cannot think of any ways to stop him wanting to get out of bed and go to

> the loo.

>

> Has anyone else had this experience? Is there any way to stop this strong

> urge?

>

>

>

> Elaine (61) from Sydney Australia caring for Jim (82)

>

> Offically diagnosed LBD Oct 2009, but symptoms began at least 5 years

> before.

>

>

>

>

>

>

>

>

>

>

[Guest guest]

This can be part of the Parkinson's part of the disease. A Urologist explained

to us that Parkinson's causes a neurogenic bladder. And with a neurogenic

bladder you have an almost constant urge to urinate. We tried condom catheters

at night and were not successful. However, we still use them during the day if

we leave the house. Before their use, we had frequent accidents or were unable

to drive for more than 20 minutes without finding a bathroom. Because of his

mobility problems, finding a bathroom where I could help him was almost

impossible. Grocery shopping was a nightare. With the condom cath in place we

can pretty much have a regular life with shopping and trips to restaurants, etc.

Have you tried using a bedside commode for nighttime urination. We don't, yet,

but I am considering it. Our bedrooms are small and the bedroom he is in has a

king sized bed in it. Not much room for a commode. And I find them visually

pretty unacceptable, too.

Let us know what you decide, or what you try. It's always helpful to read what

others have tried even though their solutions may not work for you.

Smiles, Nan

> >

> > Hi

> >

> > Thank you for your suggestion and the link.

> >

> > I have discussed these condom catheters with our doctor but at this stage we

> > do not think they are appropriate for Jim yet.

> >

> > There seems to be something happening in his brain that gives him the urge

> > to go to the bathroom and nothing can divert him from this. He is like a

> > robot that won't stop until he has completed the " set of instructions " .

> >

> > At this stage, even if he were wearing the condom catheter, he would still

> > be driven by this strong urge to make the trip to the bathroom and my sleep

> > would still be disturbed as I need to accompany him on this 'journey'.

> >

> > As we walk to the bathroom, he pulls at his penis and his Depends pants and

> > we are concerned that he would just pull the condom catheter until it came

> > off and then I would have a worse mess to clean up J

> >

> > He used to be on 25 mg of Seroquel at night but the urge to urinate was

> > stronger than the sedating effect of the Seroquel.

> >

> > I withdrew the Seroquel because it made him like a sack of potatoes and that

> > made the trip to the bathroom so much more difficult, even with a

> > wheelchair.

> >

> > I am reluctant to increase the Seroquel dose because even the 25 mg made him

> > groggy in the daylight as well.

> >

> > At least without the Seroquel, he walks quite readily with me and we can be

> > back in bed within 10 minutes.

> >

> > I am amazed at the one-eyed determination of the brain to drive him through

> > this 'programmed sequence' - nothing seems to be able to deter him from

> > doing it. Jim has no recollection the next day that he has had so many trips

> > to the bathroom.

> >

> > Desmopressin worked for a couple of nights (on the maximum dose of 400 mcg)

> > but it seems to have stopped working now.

> >

> > I am hoping that this will be a stage that soon passes and that these strong

> > urges will stop.

> >

> > I cannot think of any ways to stop him wanting to get out of bed and go to

> > the loo.

> >

> > Has anyone else had this experience? Is there any way to stop this strong

> > urge?

> >

> >

> >

> > Elaine (61) from Sydney Australia caring for Jim (82)

> >

> > Offically diagnosed LBD Oct 2009, but symptoms began at least 5 years

> > before.

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Elaine,

We had the urgency problem with my mil and what finally worked for her (and

us) was a treatment called ptns. You can read more about it here

http://en.wikipedia.org/wiki/Percutaneous_tibial_nerve_stimulation. It

worked well -- by the 3rd week the calls to go to the bathroom were down to

half, by the 5th treatment they were down again to 2-3, by 8 treatments she

could sleep through the night without the urgency feeling waking her up to

go. It has been since August that that treatment ended and she has no

relapse.

She would wake up almost every hour and call to go to the toilet - a short

but groggy wobbly walk. No one got sleep. We ruled out uti and everything

else we could imagine and limited liquids after 2pm etc. Her ob/gyn doc

suggested trying this. It was a huge relief to us all that it worked, for

whatever reason it did work. For a man you would need to find a urologist

who can apply the treatment. It's very easy - a thin long acupuncture

needle at the nerve inside the ankle for 30 minutes once a week for 10-12

weeks, then one maintenance treatment every few months. If you can find it

I would suggest trying at least to see.

Hope you find some answer so you can both get sleep J

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of Elaine Elliott

Sent: Sunday, November 28, 2010 4:06 AM

To: LBDcaregivers

Subject: Re: Increased urge to urinate at night

Hi

Thank you for your suggestion and the link.

I have discussed these condom catheters with our doctor but at this stage we

do not think they are appropriate for Jim yet.

There seems to be something happening in his brain that gives him the urge

to go to the bathroom and nothing can divert him from this. He is like a

robot that won't stop until he has completed the " set of instructions " .

At this stage, even if he were wearing the condom catheter, he would still

be driven by this strong urge to make the trip to the bathroom and my sleep

would still be disturbed as I need to accompany him on this 'journey'.

As we walk to the bathroom, he pulls at his penis and his Depends pants and

we are concerned that he would just pull the condom catheter until it came

off and then I would have a worse mess to clean up J

He used to be on 25 mg of Seroquel at night but the urge to urinate was

stronger than the sedating effect of the Seroquel.

I withdrew the Seroquel because it made him like a sack of potatoes and that

made the trip to the bathroom so much more difficult, even with a

wheelchair.

I am reluctant to increase the Seroquel dose because even the 25 mg made him

groggy in the daylight as well.

At least without the Seroquel, he walks quite readily with me and we can be

back in bed within 10 minutes.

I am amazed at the one-eyed determination of the brain to drive him through

this 'programmed sequence' - nothing seems to be able to deter him from

doing it. Jim has no recollection the next day that he has had so many trips

to the bathroom.

Desmopressin worked for a couple of nights (on the maximum dose of 400 mcg)

but it seems to have stopped working now.

I am hoping that this will be a stage that soon passes and that these strong

urges will stop.

I cannot think of any ways to stop him wanting to get out of bed and go to

the loo.

Has anyone else had this experience? Is there any way to stop this strong

urge?

Elaine (61) from Sydney Australia caring for Jim (82)

Offically diagnosed LBD Oct 2009, but symptoms began at least 5 years

before.

[Guest guest]

Dear , Nan and Dorothy

Thank you for your caring comments.

This time it isn't a UTI.

My gut feeling all along has been that it is a neurological issue, and your

comments, Nan, make sense for Jim.

I think a referral to a urologist seems to be the way to go.

Thank you for letting me know about the PTNS, Dorothy. That sounds very

interesting and worth pursuing. I am currently having acupuncture with a

doctor for a frozen shoulder so I will ask her whether she knows about this

treatment. Acupuncture has worked wonders with my shoulder, when other

treatments gave no relief, so it would be wonderful to see how this

treatment worked for Jim.

The wheelchair commode option is one I have considered but had to abandon

with Jim. The male anatomy creates lots of different issues compared to the

female design! God must have a sense of humour!! Last night, for example,

at 3.30 am while Jim was sitting on the toilet waiting to wee, before I

could stop him, he had pulled out his penis and started to wee all over the

floor and his clothes. The thought of having to cope with that in the

bedroom, even if we had a protective cover over the carpet, is too much for

me! It's much easier to clean up the tiled bathroom floor and tiled walls.

Desmopressin seems to have had no lasting effect.

I will keep you posted as to whether we find a solution.

Elaine (61) from Sydney Australia caring for Jim (82)

Offically diagnosed LBD Oct 2009, but symptoms began at least 5 years

before.

[Guest guest]

elaine,

 

althought this doesnt sound 'people or company friendly ''  this was what

worked for daddy, 

 

daddy was very slow to get around adn used a walker but he refusted to sit adn

pee. so he came up with this,  he would lean against the bathroom cabinet/sink

and lay  'it' in the sink and pee. we only had one batghroom but we warned

everyone to use the kitchen sink instead of hte  bathroom sink, eventhough i

cloroxed eeryitme.  but that worked for daddy,  thought i wuold share it, i

didnt notice if your hubby is able to stand  another thought is let him pee

inot hte tub,  goo dluck and hugs. sharon

--

Subject: Re: Increased urge to urinate at night

To: LBDcaregivers

Date: Monday, November 29, 2010, 4:58 AM

 

Dear , Nan and Dorothy

Thank you for your caring comments.

This time it isn't a UTI.

My gut feeling all along has been that it is a neurological issue, and your

comments, Nan, make sense for Jim.

I think a referral to a urologist seems to be the way to go.

Thank you for letting me know about the PTNS, Dorothy. That sounds very

interesting and worth pursuing. I am currently having acupuncture with a

doctor for a frozen shoulder so I will ask her whether she knows about this

treatment. Acupuncture has worked wonders with my shoulder, when other

treatments gave no relief, so it would be wonderful to see how this

treatment worked for Jim.

The wheelchair commode option is one I have considered but had to abandon

with Jim. The male anatomy creates lots of different issues compared to the

female design! God must have a sense of humour!! Last night, for example,

at 3.30 am while Jim was sitting on the toilet waiting to wee, before I

could stop him, he had pulled out his penis and started to wee all over the

floor and his clothes. The thought of having to cope with that in the

bedroom, even if we had a protective cover over the carpet, is too much for

me! It's much easier to clean up the tiled bathroom floor and tiled walls.

Desmopressin seems to have had no lasting effect.

I will keep you posted as to whether we find a solution.

Elaine (61) from Sydney Australia caring for Jim (82)

Offically diagnosed LBD Oct 2009, but symptoms began at least 5 years

before.

[Guest guest]

An interesting development took place last night.

Just as the television news was finishing, Jim started to talk. I turned the

TV off and sat with him while he talked for at least one hour.

He was unexpectedly lucid and shared many things that were obviously on his

mind. For a man who is not normally given to " deep and meaningful "

conversation, this was very " deep and meaningful " . Some of it was from his

childhood, some about friends (some of whom have already died); some about

family; some about me and I was able to reassure him that I was here for the

long haul and that I had promised to love and to cherish " for better for

worse, in sickness and in health, ... "

I was also able to ask him questions such as " are you worried about me after

you die " and he said " no " ...

But what was amazing after this was - he slept right through the night and

didn't wake up until 9 am!

In my visit to the doctor this afternoon we discussed this new development

and wondered if Jim felt an awareness that he was dying.

We have decided to try a different approach and use melatonin and also the

" talk therapy " .

So tonight I have sat with him on the bed and just let him talk. He has

fallen asleep - now to see what happens tonight and whether we will have

multiple trips to the bathroom?

Elaine, in Sydney Australia