Another UTI, now with bonus kidney stones - PSP Association

PSP Association

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Another UTI, now with bonus kidney stones

LostinHeadSpace
LostinHeadSpace

Hi all,

My husband had another UTI this week, starting in the middle of the night, needing to go every ten minutes, but this time, the antibiotics didn't help very quickly at all, and the pain got worse, and the ER diagnosed kidney stones. He only had kidney stones once before, for his first and only colonoscopy at 50, when he failed to hydrate during the "clear out," and then had the most painful experience of his life, passing that stone. My question is, I know that UTIs are a thing with Parkinson's, PSP and CBD--but are kidney stones related?

His PCP (regular doctor) was mystified that he could have two severe UTIs so close to each other--because (rant warning!)--NONE of the medical people we see have any knowledge of things that seem to be common knowledge on these boards. He has a new neuro who had no idea that UTIs were a thing for Parkinson's/PSP/CBD--which is beyond frustrating. I can barely keep up doing everything with his fatigue and health things.

Lost

7 Replies
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Larry’s had kidney stones all his life. His first attack was in his 20’s. He thought he was dying. Now he passes them and hardly notices. He told me last week he thinks he passed one. They aren’t a PSP thing but not hydrating enough doesn’t help. Hydrating is hard because of the swallowing issues.

Oh no! .... I've read this board for a year and lots of historic strings... But don't recall kidney stones being connected with CBD/PSP...I bet Jeff's on to something with the hydration....He doesn't have swallowing problems yet, does he? Can he drink more?

Xxx Anne

I can't help you with the kidney stones but as for the UTIs my wife lots of them and like your husband was getting out of bed several times during the night, we had a commode next to the bed but my wife had some falls. Eventually my wife had a flip-flow catheter fitted so she used a night bag so that she wasn't getting up during the night. Getting up so many times was wearing her out. This was while she had Parkinson's and about 2/3 years ago. She was diagnosed with PSP in December 17 and overall things are much worse although the catheter situation remains the same.

Hope you can get it sorted soon 🙂

Thanks for your comments! Hydration is definitely an issue. He just can't seem to give attention to practical considerations like water or exercise. I can't figure out how to help him care about this. (I do obvious things like set waters in front of him, and put them in his lunch for school, etc.) He's at the stage where no one at work would notice anything is wrong, but he's completely collapsed at home.

😢💔

Hi my mum has just been given a diagnosis of PSP after previously being told it was Parkinson’s. Over the last year she has had many urine infections and had kidney stones in Feb 2018 which she had to have surgically removed in September as they had got to 8mm. Mum used to drink lots of fluid however in the past 6 weeks she has been struggling with swallowing so has been put on a purée diet with thickening agents for drinks which she doesn’t like and therefore drinks less.

I hope you manage to get sorted xx

Hi, I realize my comment may be coming in late. Just curious, how is your husband doing now and what did you guys do finally?

I have had a very hard history with stones and UTIs

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