Annual review

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
We've just had John's annual review with his consultant this afternoon. He has confirmed that he believes John has primary progressive aphasia, a form of fronto-temporal dementia/Pick's disease.

He confirmed that the virus John contracted last year would have caused more damage to his brain, and could have accelerated the spread to other areas of the brain. However, the good news is that there may be some recovery, and the acceleration need not continue. PPA has normally a slow progression.

I asked about the problems with John's bladder (he produces vast amounts of urine at night, which means that we are up every two hours, and still he's regularly wet).

He suggested a nasal spray called Desmopressin which will work on the brain to reduce the stimulation of the kidneys to produce urine. Apparently it's the fronto-temporal section of the brain which controls the kidneys, so the problem is quite common with PPA.

We have to wait until he has written to our GP -- hopefully not too long. I'd love a night's sleep!

Sorry if this is boring for most of you, but it may be of interest to some.

Love,
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Sorry if this is boring for most of you, but it may be of interest to some
Hardly boring! All of these experiences we have can be of help to others - maybe not tonight, but maybe tomorrow, next week, etc.

If someone else posts something in the future and one of the members here is able to point them to your post, and it helps, then it will be more than worth it.

I'm interested anyway - the workings of the body are really mysterious.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,512
Kent
I find it interesting too Hazel. At least you`ve had a positive consultation, where help is available and John`s prognosis is hopeful.

What a shame the consultant was unable to prescribe the nasal spray there and then, insread of John having to wait for his GP.

I wonder why.

With love
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Hi Sylvia

It's because he doesn't have all the details of John's physical condition, and there may be contra-indications.

Also, as psych/ger consultant, he's only funded to prescribe AD meds. The other side of the coin is that GPs aren't funded for AD meds.

It might be different in England.

Love,
 

BeckyJan

Registered User
Nov 28, 2005
18,972
Derbyshire
No it is not boring - very pleased you are able to share your news. Sorry I cannot make much comment as I do not understand the type of dementia you mention. It is all so hard. I hope the nasal spray works for you. I totally understand the problem at night - up and down like a yoyo and just dying to get some sleep. Keep us informed about the success of the medication.
Thinking about you Best wishes Jan
 

alfjess

Registered User
Jul 10, 2006
1,213
south lanarkshire
Hi Skye

I would also be very interested in the nasal spay, for Dad, who is incontinent at night in bed.

Anything which might help is worth a try.

Or am I clutching at straws?

Alfjess
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,512
Kent
Dear Alfjess,
Sometimes we have to clutch at straws as straws are all that`s there.
With love
 

BeckyJan

Registered User
Nov 28, 2005
18,972
Derbyshire
In our situations it is worth clutching at straws!

I know each person's needs for medication are different - but just in case it helps you to know my husband takes flavoxate and alfuzosin (?spelling). At first they brought his blood pressure down too much but now they are working reasonably well (only up 2/3 times on average rather than every half an hour!). Its a lot of tablets but I feel it is worth it.

Keep clutching. Best wishes Beckyjan
 

mel

Registered User
Apr 30, 2006
1,656
63
Sheffield
Hi Hazel
Boring?
I don't think so!
I'm so pleased that there has been some positive news for you......you both deserve it!
Love Wendy xx
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Hi everyone

Thanks for the replies. If you google Desmopressin, there are loads of pages. The clearest I have found is

http://www.patient.co.uk/showdoc/30003056/

It is used for bedwetting in children and also in diabetes insipidus. There is also evidence that it improves short-term memory! Sounds like a miracle to me!

Anyway, I just hope the GP agrees that it is worth trying in John's case. I'll keep you posted.

Love,
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Update!

Well, the desmopressin has been a total disaster. :(

John has been on it for ten days, and has been going down and down. He has still been up every couple of hours at night, and in addition has become incontinent during the day. I suppose if it suppresses urine during the night, it's got to go somewhere!

The last couple of days he's also had a tummy upset, and has been doubly incontinent. He's very pale, and has no energy.

I don't know if it's the effect of the spray, or another downward slide. I've stopped the spray, anyway, it certainly wasn't doing any good.

I've contacted the surgery, and the GP is going to ring me this afternoon. I don't know whether to ask for detrussitol again, or amitriptylene. The former helps with his bladder control, but he's still up all night. The latter makes him sleep, but he's saturated in the morning. What a choice!

Any advice/opinions?
 

noelphobic

Registered User
Feb 24, 2006
3,452
Liverpool
Hi Hazel

I'm so sorry to hear that John is unwell and that the new meds don't seem to be helping. It must be such a strain on you as well.

I can't offer any advice but I hope you manage to sort something out soon, for both your sakes.

Has John's blood glucose level been checked at all? Just that there is always a chance that it could be diabetes and the test is very simple.

Take care
Brenda
 

BeckyJan

Registered User
Nov 28, 2005
18,972
Derbyshire
Oh Skye poor you!!! Not sure whether I can help but just to let you know what David takes. He now has three tablets per day of flavoxate+ 1 alfuzosin (these are for persistent weeing at night!!!). He also takes amitryptiline but I thought this was for 'depression' and I have not noticed that he sleeps too much.

No one has ever said what causes all this weeing but I know without the above tablets my life is 'hell' mainly because of no sleep myself. Even with this medication he is up two/three times and usually the pants and pads are wet - this may be his mobility as he doesnt get there in time. There is a bottle by the side of the bed but he forgets to use it.

I just hope the medics can help you.
Take care Beckyjan
(I am disappointed too about the spray - thought it may be a solution here too)
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Hi Brenda

Yes, his blood sugar has been checked, also his prostate. All OK.

The problem seems to be that the part of the brain that controls the kidneys isn't working (they think!) :(

We've tried everything, but nothing seems to work. It seems to be something we'll just have to live with. If I can get him continent again during the day, that won't be too bad.

Tomorrow is his 'club' day, and I don't know if I dare send him.

Love,
 

Nebiroth

Registered User
Aug 20, 2006
3,511
Have you had a visit from the Continence Nurse?

As the title suggests this is a community Nurse who specialises in continence problems of all kinds.

He or she may not be able to solve your problem, but is likely to have a lot of practical experience, and who knows, may have seen someone in your situation before and been able to fix things...you never know..

You'd think that there would be a device available like the ones that astronauts etc wear with plastic tubes leading to a bottle or something.

One thought, what is John drinking...is it possible that something is triggering the high urine production?

As I recall teach and coffee are natural mild diuretics...
 
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Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Hi Nebiroth

Yes, we've had the continence adviser out. She's never come across the problem either.

She provided heavy-duty pads, but the trouble is that John gets up to go to the toilet, and he can't manage the pads himself, so I have to get up with him. He goes back to sleep, and I don't!

I now buy him pants, which he can manage himself, but they don't hold as much as the pads.

There is a device that fits on like a condom, but that's not suitable either because he'd still get up, and that would make an awful mess.

In some ways it will be easier when he no longer gets up, but that sounds as if I want him to get worse! :rolleyes:
 

jenniferpa

Registered User
Jun 27, 2006
39,448
Dear Hazel, I'm sorry that this hasn't worked out: how depressing for you both.

Do you think he's gettting up because he's got into the habit of getting up? Speaking as someone who has been regularly waking at 4 am for no good reason, I think it's relatively easy for ones sleep patterns to get to disturbed and it must be very difficult to get them back on track when there's an element of memory loss (I'm having great difficulty myself).

Jennifer
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Hi Jennifer

I think he's nervous about wetting the bed, in spite of the pants and protective sheets, and his nerves make him go so often. I know the feeling, I'm awful before I go to a meeting, etc!:rolleyes:

That's why I'm not sure whether to ask for amitriptylene or detrussitol.

The thing is, in spite of getting up so often, he's still regularly soaked.:(
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Just spoken to our GP on the phone. John is back on detrusitol to see how he settles. We can review it after a couple of weeks. He says there are other things we can try, but he doesn't want to try them while John is under par. At least we know he doesn't have a bad reaction to detrusitol, even if it's not awfully effective.

He also said there's a bug, going round, which might be the cause of the diarrhoea. He was very helpful, did repeat prescriptions for us both at the same time. That saves me another job! :)

I still don't know whether to send him tomorrow -- I'll see how I feel in the morning.

Thanks for your support, everyone.

Love,