PSP Association
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First post. Happy 2018

My mother in law was diagnosed with PSP almost two years ago (Parkinsonism was the first attempt)... in her words, she feels like a Lab rat!!

She’s now, again, on Sinemet... don’t know if it’s working, but don’t know what would be like if she’s taken off it.

Our biggest concern right now are her sleepless nights, she wants to go to the bathroom all the time (refuses to use a Tena pant) so she, and her care giver (bless her), get out of bed 20-30 times every night (last night 48)!!!!

Has any of you loved ones been through this?

Anything she’s been on to help her sleep hasn’t worked...

Thank you, and all the best for this new year.

😉

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I have been diagnosed with CBD. I also had trouble sleeping and would spend many hours watching Netflix to get through the night. I recently started having a cup of chamomile tea just before bed and it has really helped. I prefer natural rather than a prescription.

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My wife was like that getting out of bed multiple times during the night, it was exhausting for her she had a commode by the bed . She also suffered with lots of urine infections. Now she takes Amatriptaline that make her sleep all night and she has a flip-flops catheter fitted and a night bag. But if you're mother in-law won't wear a pad what chance a catheter ?

Good luck...Billy

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Just noticed it's a FLIP-FLOW catheter 🤗

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😆

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Thanks Billy,

I’ve asked the carers about the catheter, but they say she’s not at that point yet. That the risk of infection is too much and they prefer to avoid it.

We’ll see how it goes, hope for the best, and take it one day at a time.

Caya

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Hello Caya and Welcome!

You will find many topics about the trials of PSP/CBD here on this site, and many have come up several times over the years. So looking at older posts from our experienced members in the community is valuable. Check out the string titled Sleep by Georgepa approx 2 yrs ago. (I think you can just put Sleep in the search window and it should show up in the resulting list. There's an extensive discussion of what carers at the time were using for sleep aids.

Also, I note that the "getting up to help them pee" thing is one of the trials that wears out us carers pretty quickly - We can't be effective carers, advocates, partners if we are sleep deprived and suicidal! So many of the past discussions have shared how members turned to "condom catheters" or (as per Evertonian, above) "flip-flow" catheters. Perhaps tell your dear MIL that its time to "let go" and it's ok to let the pee flow through the night! It's very very hard for our dear ones to give up the discipline that was so painstakingly instilled by parents way way back...They need to be assured that they still have dignity even though this is happening - that's it's just a "medical thing" like being in the hospital with an IV or something - and isn't saying anything awful about them personally!

Wishing you success, some rest, some peace, and good benefit having come on this wonderful site :-) XX

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Deju vu with my wife. Never knew for sure if Sinemet was doing any good, especially as the disease progresses. Incontinence was also a major issue. Lots of accidents, wet clothes, beds, embarrassing situations. At first she refused to wear Depends (pull-up adult diapers). But finally I insisted after a super embarrassing accident while we were on a 7 day cruise with friends. Once she tried them, she quickly got use to them and never complained again. We still used catheters to keep her on empty and avoid UTI’s.

Best wishes,

Ketchupman

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My mum has PSP, very late stage. Unfortunately PSP as others have said can result in a sharp decline and then stabilise for a period of time. With regards to night time toileting, my mum was the same. We had to convince her to wear a diaper initially because neither she or my dad could get any sleep. They were both exhausted, the diapers helped for a period of time. However, retention in the bladder meant that a catheter was the best long term solution. It enabled my mum to have some of her dignity back and eased the pressure of my Dad. It is very scary at first and we were very apprehensive about the catheter but it really was the best decision for all. Mum has had a catheter for nearly 18 months now, it is a long term catheter changed every 2 months. All the best.

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We went thru the exact same thing with my mom. We were so exhausted and although it seemed cruel we started taking her to the bathroom based on time. So we only took her once every two hours (for example) as her mobility was so poor. It is difficult at first to implement but she also knew we were exhausted with all our personal responsibilities and her 24. Hour care.

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