Incontinence - A major problem

[ZOOM4522]

I have had Parkinson's since the spring of 2014. I had my first major fall (any fall that requires a trip to the ER) in Oct. of 2018, and I have gone downhill since that night. The Parkinson's symptom that's keeping me from leading a normal life is a freezing gait, although I do have overall tightness in my body, my hands tremble slightly, my speech has softened and my breathing capacity has decreased. I did suffer with constipation for a short time, but Mirolax ended that.I have been confined to a facility since Aug. of 2022; at the time , my wife could no longer be my caregiver due to her physical condition. Incontinence set in about six months ago. I was given a prescription medication at first which did not work. My incontinence is what is keeping me from going home where I feel I belong. I NEED TO KNOW WHAT I CAN TAKE. TO GET RID OF MY INCONTINENCE; the doctors here at the facility will not prescribe any med that is not FDA-Approved.

Now once I'm home, I can try other therapy treatments to help with my freezing gait. My therapy here at the facility has been somewhat of a joke. Since Day One, I have been confined to a wheelchair. I am not allowed to stand up.by myself since I have been deemed a "fall risk". My balance is way off because I am not allowed to practice. I do get to walk with a walker which is really uncomfortable; the therapy people say that I shouldn't be using a rollator or a cane for fear of my falling.

I tried the B1 therapy to no avail, but there are a few others I would like to try, for instance, the

Light therapy and the nootfopic supplements.

Thanks So Much to Those Who Reply,

Tom

[Boscoejean]

parkinsonsblog.stanford.edu...

[ZOOM4533 in reply to Boscoejean]

Thnaks for the Link. I learned from the Link.

[jeeves19]

Tom. You say in your bio that you’re 23 years old. That can’t be correct can it?

[half-pint in reply to jeeves19]

Exactly my question!

[JOHI in reply to jeeves19]

I see in his “comments” on his home page that he is 77. Not 23. Maybe he entered something incorrectly not knowing…

[ZOOM4533 in reply to jeeves19]

I'm not 23 years old anymore, although I used to be 23 (didn't we all). Must have been wishful thinking the day I typed 23. Tom

[Esperanto]

We are quite lenient when it comes to the application of advertising rules, but this is not acceptable.

[Hope-full1970 in reply to Esperanto]

I received a few of these targeted adds myself today. This is getting increasingly annoying. It's important to look at the bio the age and when they joined.

[Boscoejean in reply to Esperanto]

what was being advertised?

[Hope-full1970 in reply to Boscoejean]

I can't even remember. After the comment was made, the advertiser deleted all of thier posts immediately.

[HugoRipanykhazov]

I'm curious as to why you don't say you are on sinemet? Surely the obvious first step should be to increase your dose? Or if you aren't on it (though I can't believe you can not have tried it, after being so long since diagnosis), ask your PD doc what your dose should be?

[Brazilbutterfly]

I just completed reading a book by Sally M. Pacholok and Jeffrey J. Stuart which is an eye-opener--Could It Be B12? I bought it on Amazon. I highly recommend it to all!! It addresses many of the symptoms which appear here.

[LeharLover62]

A couple of thoughts. Hubby has had the same issue where no one will help him exercise so he just gets worse. But every time he gets up he falls…so be careful! You may not realize how risky it is. It’s really hard to find a good PT but I suggest finding one who is Parkinson’s trained lsvtBIG or can you get to a rock steady boxing class somehow?

On the incontinence there are lots of options but it’s also very hard to treat. You need to work with a urologist preferably who knows Parkinson’s. Some of the drugs can be linked to dementia (anticholinergic). Terozasin is on trial for Parkinson’s and may be an option. Hubby has regular bladder Botox injections which has helped but not cured. Also we do a very low sugar diet and a cranberry supplement, which has virtually eliminated the risk of UTIs but you need to be on the lookout for uTis.

Do you have someone to help you through all of this? It’s a lot!

[ZOOM4533 in reply to LeharLover62]

Thanks So Much for your reply, For starters, I am going to try Saw Palmetto with pumpkin seed oil. I'll keep on trying out various meds and supplements until I find the one that works for me. Tom

[PalmSprings]

I have all the same questions as others. First, how old are you? 23? What medications are you on? Could you possibly have a UTI?

[ZOOM4533 in reply to PalmSprings]

I am 77 years old. The only PD med I am taking is Sinemet (150 mg - 4 times/day), Other meds

[PalmSprings in reply to ZOOM4533]

Hi, I would talk to your neurologist. But to let you know, I was diagnosed in 2015. I take the controlled release Sinemet 200/50 mg four times a day and a Rasagiline in the morning. You may be under medicated.

[Boscoejean in reply to ZOOM4533]

your listing says you are 23 years old so you might want to correct that

[ZOOM4533 in reply to PalmSprings]

I am 77 years old. The main PD med I am taking is Sinemet (150 mg - 4 times/day), Other meds: Venylfaxine (150 mg - 2/day for -depression); Furosemide - 20 mg/day for high blood pressure and to reduce bodily flui ds; Buspirone 5 mg - 3 times/day - For anxiety; Entacapone (200 mg - 4 times/day) - prolongs the "on" times of Carbidopa/Levodopa; Aspirin(81 mg/day); Amlodipine Besylate (5mg - 2/day - Lowers blood pressure); Tamulosin (0.4 mg - 1/day - treats symptoms of enlarged prostate); Atorvastatin (5 mg - 2/day - Regulates cholesterol levels).

I do not have a UTI now; but, about a year ago, I did (after the doctors had over-prescribed Flomax), and I was not peeing at all. UTIs are not much fun a all.

[LeharLover62 in reply to ZOOM4533]

So maybe question the furosemide with the doctor? It’s a dieretic right? Makes you pee more. You might really need it but worth looking at.

[JeanieBeanie]

Speak to a continence team. A convene can be a life changer at night time and there are leg bags for day time.

[LeharLover62 in reply to JeanieBeanie]

Agree! The condom catheters are great! Might really make home life easier while you try out supplements and meds.

[Fricnfrac1999]

Hi,My husband has Parkinson's and after taking 2 OAB medications for a few years he believes they aren't doing any good anymore. His urologist suggested an implant called Interstem. He said 2 companies do it but one called Medtronics is better for Parkinson's patients because it has more "programs". Still learning about it but my husband is going to do it. Scheduled for April 8!

[4grandbabies]

I am taking SANCTURA trospium, 20 mg X 2 per day. Works like magic