Hi dear fellow warriors!!
So do any of you have suggestions for incontinence at night? My husband went through 3 depends last night. He either can't make it in time or he just goes while sleeping. Mostly he just can't hold it.
This has been a recurring problem lately. I tried searching HU but couldn't find anything on it.
Thank you for your support and suggestions as always. What a great group!
Jeannette
He should see a urologist. There are prescription medications and minimally evasive procedures. He shouldn’t have to deal with this
A friend of mine recently had urinary leakage at night and would wake up with a modestly wet bed. He told me he used Grape Seed Proanthocyanidin Extract (GSPE) and it almost completely eliminated the problem. This is the product he told me he used at the recommended label dose :
amazon.com/Carlyle-Grape-Ex...
On the downside, I have not seen studies to support use of GSPE for this specific purpose. On the upside GSPE has shown overall beneficial effects for health and is noninvasive and has low potential for side effects.
One supplement that has shown benefit for bladder control in studies and anecdotal reports is Pumpkin Seed Oil(PSO) as mentioned here :
ncbi.nlm.nih.gov/pmc/articl...
Here is a link to a typical product. Read some of the reviews to get an idea of what people find with use of the product :
amazon.com/Carlyle-Pumpkin-...
Lastly, Melatonin reduces nocturia at just 2mg/night according to the following study :
pubmed.ncbi.nlm.nih.gov/355...
Here is a relevant study quote :
' Melatonin can be considered a safe and effective treatment for nocturia in elderly women.'
And the following study showed that melatonin reduced nocturia in male and female people with Parkinson's Disease at just 2 mg/night :
pubmed.ncbi.nlm.nih.gov/335...
Here is a relevant quote from the study :
' In this preliminary open-label study, administration of sustained-release melatonin 2 mg was found to be safe for clinical use and was associated with significant improvements in night-time frequency and nocturnal voided volumes in PD patients. '
Here is a link to a typical sustained release product :
amazon.com/Pure-Encapsulati...
Art
thank you Art. I did get the pumpkin seed oil but haven’t been faithful in giving it to him on a regular basis. I will now! I will look into the other notes you sent. He takes 10mg of melatonin every night. 🤷🏽♀️ Too much?
I would stop the 10 mg dose for a moment and switch to 2 mg sustained release such as the one I linked to. That is what was used in the study, 2 mg sustained release melatonin, so it is definitely worth trying while you put the 10 mg on hold. My friend has been very happy with the results he got from the GSPE product I linked to at the suggested label dose of 1200 mg. with dinner.
Art
To reduce or eliminate the need for bathroom runs in the middle of the night, no liquids except for what is needed to swallow pills for the two hours before bedtime. Also be sure to visit the bathroom to empty his bladder just before bed.
having good fit on the Depends is important and also there are booster pad inserts that are more absorbent so hopefully combining these with other therapies can lead to more comfortable nights
My husband used to have to get up several times to pee at night, but gets up only once now. He is using high dose thiamine. I can't think of anything else at the moment that might be responsible for the improvement. He has prostate enlargement which makes him susceptible to frequent urination.
Although I limit liquids about 5 hours before bedtime, he even drinks a big glass of water just before bed. Go figure...
HDT is what stops my urinary urge incontinence.
Thank you. So interesting to see another way HDT helps.
How much are you taking?
I generally take 1 gram of thiamine HCL per day, and I've been doing that since November of 2018 (I currently weigh about 103 lbs). I recently tried thiamine mononitrate at 100 mg, but I didn't really notice any difference.
Some days I take just 500 mg of HCL, and I skip days now and then. If I skip more than a few days, the urinary urge incontinence starts to come back. That has become my biggest indicator of whether I'm taking too much/enough thiamine.
Huh one would think that drinking before bed would not be good. Must be that his brain is still alerting him. I think a sleepy brain is also the culprit. My hubby does take the thiamine but we are still experimenting with it. I have him on 500mg a day and I'm not sure it's doing any good. He still has quite a bit of dyskinesia. And did I mention he fell headfirst while on his walk this week!! Ended up in the ER to get stitches in 3 different places on his face. Pretty sure that his sunglasses cut his face. No broken bones so that's good. But each time he has an issue like this is sets him back.
Does he use a stick or walking aid?
I know it slimness. He's done it all his life and refused to stop that bedtime water. So sorry about your husband's fall and stitches. Bruising and all can be discouraging. (Yeah, I get setbacks myself.) But no broken bones is a relief.
I just told him about this thread. He says that when he puts one drop of methylene blue in his water, he doesn't have to get up to pee at all. But when he takes a week off the MB, then he gets up once.
I can remember times a few years ago that he had to get up 2 or 3 times at night.
It's been a few years since he started HDT and it's been hard to find his best dose. I think we've got it now. 2500 for him.
could you please tell me if my husband can take MB if he takes Selgiline? Thanks
What's MB? He takes Rasagiline which is similar to Selegiline. He takes 245 and 95 mg of Rytary 4 times a day and then takes either Mucuna or Carba/leva in the middle of the night if needed.
Methelyne blue. Not sure if I'm spelling it right. I bought it years ago and am worried it might interact with selegiline so haven't tried it. I would be so happy if we could .
ForViolet,
I have another friend who found the GSPE got rid of or greatly reduced his enlarged prostate at the same 1200 mg dose as my other friend used per night with dinner. He told me that he was running to the bathroom all day and all night and then when he went to urinate, he described it as, "Morse Code" with a hard time getting started and a lot of starts and stops. With the 1200 mg of the same brand GSPE as my other friend, he says his urine stream is strong now with normal urination frequency and he generally sleeps right through the night now.
Art
Another reason to cut down or eliminate sugar. The body copes with high blood sugar levels by excreting it in the urine.
No liquids after dinner- and go to bathroom before bed..
My money's on the 10mg of melatonin keeping him asleep despite the bladder signalling mechnanism telling him he should wake up. Either that or PD is messing with the signalling, which is autonomic failure.
Hubby’s urologist does Botox injections in the bladder. Also prescribes a catheter condom, which is way less messy than relying on depends overnight.
If you go the urology route, which is a good idea , even if you’re trying supplements in case of UTIs or prostate issues, try to find one familiar with PD. They might prescribe Tasigna, for instance, which has some evidence of benefitting PD. Also be sure to avoid anticholergenics which are tied to dementia.
Thank you for all of these great suggestions. He has an appt. this Tuesday and I will ask about all of this.
To all of you!!!!! I learn more from you than his doctors. After losing his second neurologist, and not able to get with others because they aren't accepting patients, and having to work with a PA, and then waiting until MARCH to actually speak with a neurologist , you are all a Godsend! Blessings and health to you all. I would be so lost without you. Ok now I'm crying!
My HWP has had incontinence for quite some time. The best solution was to purchase External Condom Catheters. There is a night time (large bag) and he is sleeping much better. We use a daytime (smaller bag attached to his leg) that gives him the freedom to attend the Adult Day Program. His walking is poor and this has become the best solution. We purchased a travel wheelchair to transport him to his outside activities. The External Condom Catheters were purchase from a Medical Supply Store.
Ok. If it gets to that point, I guess we will go that route. Does he not get up at all then in the middle of the night? When I get up which is once or twice a night, I will go in and check on him and wake him up to go if it's been 4 hours. This has helped. He has no problem going right back to sleep. He's one of those whose head hits the pillow and he's out! He has always been like that. Since he fell this week and now has stitches on his face, he sleeps on his back again which makes him snore, and leads to a poor nights sleep for me! I'm out! guest room works great.
has been been checked for a urinary infection?
Check out quickchange.com. Their wraps for men with incontinence have been a real help for my HWP. I use them inside a Depends. They hold 2 c. of liquid.
I ordered the sample pack and he blew through that! I've ordered the 50 pack. He can't put them on himself so I have to get up with him every 2 hours to take it off and put it back on. It is much better than depends as he can fill it up without it leaking onto his pjs. Interesting concept! Wish they made adult diaper pants that worked as well. If he just wears the depends and sleeps on his side, the urine travels right through everything. Fun times!
Results are coming in from the Urinary Urgency Test Group of the Broccoli Sulforaphane Research Group show that Sulforaphane has dramatic and immediate effects on reducing the need to urinate at night (nocturia). Typically the number of times to get up is reduced by 50% . One person who had to get up 3-4 times a night, reported that following taking 50ml of BST drinking 8 oz of water just before retiring and had slept through the night without getting up once.
To find out more about Sulforaphane testing go to patientresearcher,com or on Facebook at Brccoli & Sulforaphance Research Group for Parkinson's disease.
A couple of typos in FMundo's answer. The recently set up Broccoli & Sulforaphane Research Group FB site already has 93 members and will become a source of information on how Sulforaphane interacts with cells to protect against neurodegenerative diseases. It will also be where we post case studies of the symptom response to sulforaphane treatment using Broccoli Seed Tea. The first of these will be from the Urinary Urgency subgroup before the end of the year. The address is
for what is worth, let me add my 2 cents:
i had similar night walks and the only thing (and i tried many) that really helped was Desmopressin (msn.com/en-us/health/drugs/....
the other is, as i'm considering it now, is "botox" procedure - apdaparkinson.org/article/b....
DISCLAIMER: This is not medical advice, please read up and see if this is something worthy considering. Of course, consult with your family doctor and other specialists for fully educated decision.
hope this helps.
thank you! We see his doctor this week and I will ask about this. I have so many new ideas to explore and try!
what's the mg on the Desmopressin that your husband is taking? His PCP prescribed .1 mg and he still has big issues. We are up every 2 hours to use the bathroom. My body is now programmed to get up whether he needs me or not.
Bedwetting alarm, testosterone supplementation (ashwagandha increases testosterone by 15%).
so the testosterone will cut down on the incontinence?
urologytimes.com/view/testo...
Also they have found it is neuroprotective for pwp.
How do you know when to go to emergency when PD symptoms are beyond erratic? 
ARE YOU A NON TREMOR DOMINANT PD PATIENT WITH DYSKINESIA? IF SO, PLEASE HELP.
Increase in Carbidopa/levodopa causing constipation
