My partner is 78 and was diagnosed with pd 8 years ago. The disease developed relatively slowly but over the last 6 months things have changed. Occasional urinary incontinence, caused by not being able to get to the bathroom on time, has developed into double incontinence and the need to wear protective pads 24/7 in addition to severely restricting movement and needing to clean up bedsheets, clothes etc. very frequently. This is very distressing to my partner and myself and we are both struggling with this issue that doesn’t seem to be addressed very often in Parkinson’s forums. Can anyone offer advice ? We both loved to travel and now are fearful to even leave the home. I am feeling overwhelmed and struggling and my partner is suffering. All advice and support very welcome.
Incontinence : My partner is 78 and was... - Cure Parkinson's
Incontinence
Though I was only diagnosed last week, incontinence was one of the symptoms or questions I had written for my neurologist. I'm an 84-year-old female who has had minor issues for a while. Gradually, I realized I was not just buying stock in Depends but the company: Night-Defense, 24/7, and still occasionally having to have sheets changed.
I have GCA and recently had a bad flare, three days of IV Prednisone, and am still on 60 mg per day. I'm not sure when Parkinson's started because I was blaming all the typical symptoms on too much Pred. So, I'm a new member, but my neurologist explained it to me that all muscles are affected: throat (which I'd noticed), bowels, bladder, etc.
I usually carry a small 'passport'- type bag and switched to a slightly larger, cool-looking over-the-shoulder one so I could carry an extra NDefense and plastic bag for easy disposal in any restroom. Anytime I plan on sitting, I go into the bathroom first, and I never fail to deposit more urine than I think I've even had that day. Whether I think I have to go or not, it has become my most frequented room in the house.
One of the most helpful things I find about these forums...is not feeling like I'm alone in many of my experiences. Hope it helps...
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Dear Grammy80, thank you so much for your kind response. I am so grateful to you. It means so much to know that we are not alone and your tips for managing the problem are so helpful. Thank you so much for sharing and understanding. It must be overwhelming for you having been diagnosed so recently. (My partner and I have had 8 years to gradually adapt). PD is tough but it can progress very slowly. It sounds like you have a very good doctor too. I wish my partner’s neurologist had explained things like that so well. Having good medical support is so important in minimising the symptoms and maintaining one’s independence. Big hugs and many thanks to you.
I'm so glad!!! This forum saved my sanity in 2019 when I woke blind in one eye and nobody knew what 'GCA' was....I've been a fan ever since. As you say, once we get help managing and coping with the knowledge that we aren't alone...makes a lot of difference.
I have more questions than answers, I'm sure you'll help me too.💞
I think there are at least ten types of medicine for this problem in every country! I also take one kind, it solved the problem perfectly.
20 years before diagnosed with PD I developed bladder & digestive issues. Over the next few years I'd a camera in every orifice 😵💫. NHS were very thorough here,but nothing showed up,so I was sent to a physiotherapist specialising in pelvic floor muscles for several weeks, and for her helpful advice,exercises and identifying bladder irritants I'm so grateful, because it gave me back a quality of life I thought was lost. If you can find such a PT in your area I would highly recommend that.
Try Saw Palmetto tabletsI have an enlarged prostrate and which caused the need to urinate frequently and up during the night 4-6 times a night.
The improvement was about 90%.
I don't know if will help but its worth a try.
Dear Allypally49, thank you so much for responding. I will look up Saw Palmetto.
I feel your pain…
Some things I have changed sinceexperiencingincontinence:
1. No more trying to “hold it”. As soon as I have an inkling I have to urinate I head to the nearest bathroom. If I wait until the last minute to use the bathroom, there will surely be an accident
2. I don’t go annywhere until I find out if there is a bathroom nearby. The iPhone App ‘flush’ identifies where there are accessible bathrooms for the public. I the one I use is USA based only I believe, not sure about other countries
Hi there. Very distressing to hear this for you and your partner. Wanted to mention when the dystonia in my foot heightened beyond the levocarb managing it, my neuro put me on Compton. I had a terrible time with this medication and the incontinence became a big issue. Really uncontrollable such as your husband is experiencing. So I got off that. Strangely, I was able to return to previous levocarb and managed okay. But that really shook me up. Has there been a change in medication for your husband?
Dear DogsWoode, thank you so much for your reply. No, no change in PD medication. The urinary incontinence is caused by the combination of prostate issues making urgency for the bathroom essential coupled with PD making any fast rush to the bathroom impossible. The fecal incontinence has been caused by an inability to control constipation (PD linked). The doctors prescribed macrogol as a solution that could be taken daily, long-term, but the results of the macrogol remain very inconsistent from day to day for the same dosage - ranging from occasional continued constipation, to more generally, unpredictable and uncontrollable dihorrhea. The urinary incontinence is much easier to find solutions to, but the fecal incontinence has us pretty much house-bound and completely incapacitated. I guess the question is how to return to ‘normal’ and controlable bowel movements but despite several months now trying everything including, of course, dietary fibre etc. this objective seems out of reach and yes, the distress is acute.
When my mum began using macrogol (Laxido in the UK) her results were very inconsistent too....very liquidy/ watery stool... then fairly solid...then watery. Very difficult to manage.
As a stool softener, magnesium citrate has always provided much more consistent results ....softening the entire faecaI output rather than giving rise now to liquid and now to solid.
I have tended to keep under 400mg/ day as there are some concerns surrounding prolonged, heavy use that are worth looking into.
Effortless bowel management came only after I introduced a prokinetic. PD folk have limited options but Pruclaopride (Motegrity) might be worth exploring.
My husband has Parkinsons and he had the same problem (not being able to get to the toilet in time due to poor movement) On the advice of a homeopath and kinesiologist he started taking tissue salts/cellsalts no 6 Kali phos ad number 1 Calc fluer (they are homeopathic and dissolve under the tongue) 4 pills of each twice a day and after taking them for only 2 days he could move better and got to the toilet in time so the problem stopped. Hope this helps.
Wow ! That sounds amazing. I will try to get hold of these products and give them a try.
I buy them online here (I'm in the UK, but any homepoathic pharmacy can make them up for you) health-emporium.co.uk/produ...
PTNS sessions on the UK NHS definitely helped me.
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