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Do you struggle with urinary control?
I recently learned that it isn’t uncommon for those with Parkinson’s to struggle with urinary control. In some cases, this might look like we have to run to the bathroom suddenly. Or it might change how we hydrate.
Do you struggle with urinary control? If so, how do you manage it?
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54 Replies
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Yea, I find that occasionally I do have the same problem, however I’m not sure it is related to PD.
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I am 75 and live in Australia. I was diagnosed with PD about three years ago. By far the biggest issue for me is I suffer with extreme nocturia. I have to get out of bed 6-8 times each night to urinate. Needless to say, this is having a big effect on my quality of life. I have consulted two urologists but have not found anything that improves my situation. One urologist tried a number of pharmaceuticals and in desperation I recently completed a 12-week course of Percutaneous Tibial Nerve Stimulation (PTNS) with the second urologist.
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Have you considered self cathaterization? I think that the ability to relieve onself quickly without all the fuss and bother of getting up would make it worthwhilee.
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With the external cathether, you can wear it 24/7 and change it every day. There is no painn and no risk of infection. It attaches to the head of you penis and you urinate whenever you want. It’s simply to empty it when you find a restroom. It fits nicely inside your pants. At night, you can attach a bigger bag to empty in the morning. It’s nice to sleep through the night without getting up multiple times.
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tries 3 different types but the tossing and turning at night dislodges the tubing at times.Any suggestions?
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Have you tried Men’s Liberty. It’s glued on and taped so it doesn’t leak. I found that if I sleep on my left side, it stays on despite me moving a lot. If you are unsure,, put a towel underneath for added protection or wearr a men’s depend.
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I struggled with urinary urgency for a number of years until I made the connection between C/L off time and the need to pee. I would experience urgency multiple times during the day and get up as many as four times at night to produce a tablespoon of urine. I broached the subject with my neurologist and asked if we could add a fifth dose of C/L just before I go to bed. She added a half-dose that I take each night and the need to pee has dropped off to once a night and often not at all. If you take a longer acting med than C/L this may not solve your problem, but it sure helped me.
She also added amantadine to my cocktail. This med has eliminated the daytime off-times which was causing the urgency during the day.
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Although I am female, I will investigate. In the meantime, my neurologist recommended a Urologist. Thanks
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Can you tell me what C/L is? Thanks.
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Roger, I’m interested in knowing about your experience with Percutaneous Tibial Nerve Stimulation (PTNS).
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I am a 59-year-old woman. I’ve been fighting young-onset PD for 26 years. My urinary issues began about 6 years ago. I had a couple “accidents” at home–I didn’t just leak a little; I passed about ½ cup of urine each time. Ever since those incidents, I have worn Depends incontinence panties daily. I still have those accidents. At night, I wear them so that I don’t have to wake up my husband to take me to the bathroom.
So I called for a “first available” appointment in urology. He was a middle-aged man, who literally was writing a prescription for me as I was sitting down in the chair, before I’d even said a word! I insisted that he let me explain what was going on. It turned out that the Rx he’d been writing, for frequent urination, would not have addressed my issue, incomplete emptying of the bladder.
Here are some things I’ve learned about my urinary challenges over the years:
1) Hydrate! The recommended daily intake (RDI) for water is six to eight 8-ounce glasses of water. That’s half of a gallon. I have found it helpful to use a “coaching” bottle, which is a 64-oz. plastic jug with a gauge on the sides noting, in 4-oz. increments, how much I’ve drunk, with motivational sayings (“Keep on chugging,” “You’re almost there!”). Caffeinated drinks, such as coffee, tea, and Coke, are diuretics. In other words, they cause me to get rid of more liquid than I have drunk, which needs to be considered when computing my daily intake. Being fully hydrated helps me avoid urinary tract infections (UTIs), which are very common in Parkies.
2) See a urologist (Women: try to find a female urologist. We have additional factors (i.e., childbearing, menopause) that can affect our bladders.). Primary care physicians rarely have knowledge about Parkie pee problems unless we teach them.
3) Advocate! I may not have an M.D., but I have a P.H.D. (Personal History of Disease) that makes me an expert in my Parkinson’s. I have overcome my fear of asking “stupid” questions, but I do try to respect my doctor’s time by writing and prioritizing my questions in advance. If we don’t address them all during the appointment, I can leave the list with her so that she can have her nurse mail me additional information.
4) Have your care partner or a close friend come along to the appointment. It’s good to have an extra set of ears to take in what is likely to be a lot of information. Also, my friend and personal care attendant, Jillian, is often able to add changes she has observed during the eight hours we spend together every weekday. And she can translate my speech, which is soft, slow and often difficult to understand.
5) Carry incontinence products with you.
6) Women: do Kegel exercises to strengthen your pelvic floor.
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Jackie. Thank you. Was referred to a PD Urologist by my PD neurologist. Am calling for appointment. Have done same stop-gap solutions you suggested. Excellent.
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Jackie, what great advice! Thanks a lot!
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Excuse my ignorance but when you said:
“Caffeinated drinks, such as coffee, tea, and Coke, are diuretics. In
other words, they cause me to get rid of more liquid than I have drunk,
which needs to be considered when computing my daily intake.”What needs to be “considered”? Is it we need to drink more if we are taking caffeinated drinks?
Thanks
Narada
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My husband has urinary urgency when he gets up to come to dinner, turns on the faucet to do dishes. He always goes to the bathroom before we leave the house in fear of not making it to our destination. I, the non Parkinson partner saw a physical therapist for pelvic floor disfunction. It helped my urinary incontinence and urgency. While I was seeing her she was taking a class on working with Parkinson patients with urinary issues. I would check to see if you have a PT in your area who specializes with PD or better yet with pelvic floor dysfunction in Parkinson’s.
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DITTO! Thanks. Your synopsis was perfect. Have had my PHD for 10 years. Feel qualified to comment.
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Since my diagnosis of Parkinson’s three years ago, I’ve also have been struggling with urgency incontinence. I have adapted by wearing diapers 24/7 and have a positive attitude about their convenience. My wife has supported me by occasionally wearing a diaper as well.
I’ve become a diaper lover. -
Yes, I struggle with it but just recently (Iwas diagnosed in 2009). The urge comes quickly and it’s keeping me at home too much.
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I recently ordered Men’s Liberty, an external catherter. It’s covered under Medicare. I think it will be a better option than diapers. You can call 888-776-9030 for more info. I will report back once I’ve used this product.
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Sometimes I do and sometimes I don’t. I’ve learned with this disease that every day is different. I don’t have leakage but sometimes when I have to go it is RIGHT NOW!
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following this topic for more guidance.
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I do struggle as well. Some days, especially after drinking green tea, I go a lot. I’m experimenting with a supplement from Life extension. I’ve been trying it for less than a week. Yesterday, it worked really well or it was a flook . I will continue to experiment and do kegals as well.
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Interested in knowing about that life extension supplement. I always like looking for more functional medicine approaches to situations.
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Yes, I’ve had a problem that seemed to start about the time I was diagnosed with Parkinson’s. Just recently I was referred to a Urologist and she has sent me to a therapist for Physical Therapy. I have just started with her but I am hopeful that she can help me resolve my problem with urinary control.
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I am a 72 year old woman with PD for 6 years. I have had atrophic urethritis which is due to low estrogen and causes pain on urination. I have had urge incontinence and nocturia and I noticed when I use vaginal estrogen cream for the urethritis, I do not have to get up at night to urinate and I don’t leak on the way to the bathroom. It is likely some women with urinary control problems have post menopausal low estrogen levels. I agree seeing a female urologist or gynecologist is a good idea.
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My husband has PD. He goes to the bathroom 3-4x per night. He has urgency issues from time to time. He does not want to wear diapers, so he has wet the bed a few times. Ugh. His urologist has not been helpful in dealing with this issue. He just says to wear diapers. 😫
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Diapers are an expensive and poor choice unless he has anal leakage. I use a product called men’s liberty. It’s an external cathether which is coved 100% by Medicare,.
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- I agree. Diapers ARE a poor AND expensive choice. At some point, we will try the catheter. He IS on Medicare, so glad they cover the catheters!
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Thanks to everyone for your comments and suggestions. They will help me to plan my discussion with my Urologist in a couple of weeks
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Hello Sherman. What does “C/L” stand for?
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Oh, sorry. C/L is carbidopa/levodopa, otherwise known as Sinemet. There is a lot more I could have said, but I opted for brevity. Here’s the whole story:
C/L is the go to drug for treating Parkinson’s symptoms. One problem with it is that it has a very short half-life, so it is normally taken three to four times a day. As you continue to use it, it starts to wear off faster, resulting in “off times,” e.g., times between doses that the med is no longer effective.
There are various ways to deal with this problem; controlled release forms such as Rytary; larger dosage; a device similar to an insulin pump that meters out a liquid form into your body, etc.
In my case, we went the simple route—because I was not experiencing significant off times during the day—of adding a half-dose right before bed. That gave me a solid 4 to 6 hours of sleep before my bladder told me I had to pee. So I was able to get up once, rather than 3 or 4 times a night.
What I am suggesting is that it may not be a urinary problem at all, but could be associated with the meds wearing off as we sleep, and when they are sufficiently off, we start losing control of the little sphincters (valves) that hold back the urine.
My doctor needed a little persuading, but I keep pretty good records of my symptoms, urinary and bowel habits, mealtimes—anything I think could help me understand my disease, and I could show her that I was experiencing a need to pee whenever my meds had worn off during the day. It was a short leap from there to presume that the same thing was happening as I slept, but without the benefit of a next dose until I started the new day. In my case, I took my last dose at 6pm, went to bed at 10, and started getting up to pee about once every hour or so around 11pm or midnight. Adding a half dose right before bed (10pm to 12am) gives me an additional “on” cycle and the ability to sleep 4 to 6 hours before getting up to pee, and then only once before I get up and start my day.
Long, but hopefully helpful. Apologies if TMI.
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Hello Daniel. My treatment consisted of stimulation once each week for twelve weeks. It has had no effect on me. An acupuncture needle is inserted in the ankle and a voltage applied for 30 minutes each session. Most of the cost is covered by Medicare in Australia. More information is in a scientific review article by Gaziev and colleagues titled “Percutaneous tibial nerve stimulation (PTNS) efficacy in the treatment of lower urinary tract dysfunction: a systematic review” published in the journal “BMC Urology” . The web address is http://www.biomedcentral.com/1471-2490/13/61
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Wife speaking for husband. Urination increasing from 2xnight to 3-4 times to which husband rings buzzer to bring him urinal. Very disruptive to my sleep but dont want indwelling catheter for him . Polyuria its called with voiding of 150 to 350 cc’s each time. All remedies on the market have neg consequences. plastic cups over penis which leak if you are a restless sleeper. Elastic pants with plastic cup over penis did not work as did several other attempts using latest devices. Does anyone have a remedy that would help me with having to get up 3-4 times a night?
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I use the Men’s Liberty external catherther. It comes with a night bag attachment. When applied corrrectly, it does not leak. It attached securely to the head of the penis. It’s covered by Medicare. !1-800 776-9030. You do need a doctor’s note.
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Yes, I was taking Rytary which is a type of carbidopa/levodopa that helped with my urinary control among other symptoms. My Neurologist was giving me samples until we could get me set up with a patient assistance program but that Neurologist has retired. My new Neurologist seems to have a problem connecting the medication to the patient, therefore I ran out of Rytary which means that I’m back to having problems. The manufacturers of Rytary are wonderful people and are helping to make the connection so I hope to be better again soon
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I am 68 y/o male with PD x 8 years+. I have urinary urgency and incomplete emptying partly due to PD, partly due to enlarged prostate. No accidents as yet, but had a couple of close calls. My urologist and neurologist feel I have a combination of the prostatic obstruction coupled with a neurogenic bladder from my PD. My urologist prescribed Myrbetriq, which is new and very expensive and would have cost $240 a month(30 tablets). It relaxes the bladder muscle and theoretically reduces the urgency. I saw a previous post from someone who was prescribed the same and could not afford it. My solution was to order it from DiscountCanadaDrugs.com based in Winnipeg, Canada. I bought 100 tablets for $53 including shipping. It seems to work as well as the samples my urologist gave me. It did not totally solve the problem, but I will have prostate surgery in June to provide more relief. You need to send a scan of a hard copy Rx to the Canadian pharmacy.
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Another wife speaking re husband who has PD and a neurogenic bladder. His prostate is slightly enlarged but mostly hard. The bladder muscle itself (not so much the sphincters) has very little to no tone so he can only urinate independently (without catheter) if it is very full but it empties incompletely. His urologist (in a prestigious position at Stanford University) told him to never let anyone recommend prostatectomy as it would remove one of the barriers to the urine just flooding out of the bladder. With self-catheterization 2-3 times a day he does fine and has been doing it now for about 5 years. Only one infection early on. At least it is more predictable though he sometimes has to get up in the night too. as he feels sensations of urgency.
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I take care of my 85 year old mother who was diagnosed last year with some form of Parkinsonism (can’t tell me which one) and she has to go to the bathroom at least 8 x’s in the day time. She was prescribed oxybyntunin and it has helped alleviate her going at night, but we have to constantly deal with dry mouth. She has her sugarless lozenges. We had to do the oxy because I was getting up 4x’s a night with her and that was not good for me. I’m worthless when I don’t sleep. Doctor did mention the Myrbetriq but insurance does not cover it. I may have to buy it for her but it’s about 400.00 dollars for a 30 day supply. I can’t stand it when doctors don’t listen. They don’t have a clue what we caretakers go through, so do research! She gets too many UTI’s. She takes the oxybyntunin at 6:00 at night and she gets up only once at night. She has problems with gait, balance and basically everything. I don’t know if it’s her age or disease, but it’s a tough job this caretaking but she’s my mother and she took care of me!
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In Parkinson’s patients Oxybutynin may worsen constipation problems. Men over 60 need to rule out prostate BPH as a factor Your doctor can give you a Rx for once a day 4mg generic FLOMAX . It is a cheap safe rule out that can work in a few days.
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My prostate was 3-4x normal size and seriously obstructing urine flow. My urologist used a newer technique called aquablation which uses a computer mapped and guided water jet to precisely carve out just the right amount of prostate tissue and leave enough sphincter intact to prevent incontinence. I had it done in early June, it was done through the urethra under general anesthesia, I was in the hospital overnight, in part because of the PD, got the catheter out before discharge, recovered well and can urinate well now. Urinary urgency subsiding. I continue on Myrbetriq.
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I have struggled with urinary control since the birth of my second son, which was 38 yrs ago..I used pads and find that it works for me. I didn’t associate the problem with PD. But now I’m thinking that perhaps it’s been exasperated by my PD diagnosis.
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