Loss Of Memory Event Last Night; Very Scary

[JudyJ]

I was feeling a little disorientated before I fell asleep last night. My daughter who lives with me has a bedroom downstairs of our large rambler & on the opposite side of the house (we have to find a way to communicate if I need her). I awoke about 2 a.m., feeling disoriented. I tried to call out to her but couldn't remember her name. At all. Never has happened before. Instead, what came out of my mouth were names of animals...I remember calling out "Skunk, Elephant, Kangaroo, Chipmunk..." but don't remember the rest. She didn't hear me & I eventually fell asleep again. This wasn't a dream. Has anybody heard of or experienced this before. Scared the bejeebers out of me.

[JudyJ]

Also, I know it wasn't a dream because I got up and let the dog out, tho I was very wobbly. I did open the door to downstairs where Katy's room is, but still couldn't remember her name but repeated the list of animal noises to get her attention. Been dealing with Thrush for a month now, and it's changed my voice to a raspy something or other. She didn't respond again. About 10 minutes later, worried what was going on, heard a pack of coyotees on my property yipping; it's actually quite loud and had a been about a month since I last saw or heard them.

I then slept thru several alarm clock 'snooze' buttons because after so many hits on the snooze, it stop working. Woke up very disorientated and wobbly but panicky. I looked thru my planner and realized I'd slept thru my 'swallow test' at a local hospital.

Any feedback is appreciated; I will also try to get an earlier appointment than was set with my Neuro. Not remembering her name but calling out a string of animals instead was pretty creepy.

[LizzieF in reply to JudyJ]

Hi Judy. I bought a baby monitor from eBay and put the unit and one of the monitors in the room where my mum is and one in my bedroom and I can hear everything, even her breathing. She cannot call out anymore, but if she starts to choke or sounds distressed I can go down to her. It's reassuring for her to know that I can hear her.

Best wishes

Lizzie

[JudyJ in reply to LizzieF]

Another excellent idea! And so simple! Thanks a bunch, LizzieF.

Judy

[JudyJ]

I meant animal names, not noises, when I called down to her from the hallway. This is just really weird & scary.

[Hidden]

HI Judy

First and foremost, it sounds as if you were woken by something from a deep sleep and this disorientation happens to the best of us on these occasions! I woke a while ago and couldn't remember what day it was or where I was and it's silly but when you don't know, it makes you panic and want to know even more.

Secondly, mum had a few incidences of the wrong, quite random and somwetimes complex words bluriting out but it only happened for about a month and was only about once a day but it was always when she was trying to answer us. When she instigated speaking it didn't happen. Try not to worry about such things as when you are tense it will increase. All muscle actions we do are either learned from a very young age or reflex and it's often when we think about them that they can get stuck. I think the key thing is not to panic. I think what you seem to be finding from your recent blogs is the tiredness that consumes pwPSP. Obviously being a younger person you are doing a lot more than someone like my mum was and of course you are more aware of the subtle changes because you understand the condition a lot more.

If you are still fine with reading it might make you feel more secure if you write down a few key words and leave them in good places. If nothing else you will feel you have done something helpful!

Hugs, Dianne xx

[JudyJ in reply to Hidden]

Good advice and from experience, but there was just something so uniquely different about this experience that has me worried. Nothing close to anything I've experienced before and over a duration of time. Even after I was settled in bed with the dog, lights still on, etc., when I heard the coyotees calling, I STILL couldn't remember her name; I started calling out to hear to have her come up an try to locate the coyotees, but all that came out was the list of animal names, in the same order. Really, really scared me. Have much to discuss about this event next time I see my Neuro. Shook me to my core. Otherwise, my balance & disorientation have been bad the latter part of the week, as well as verbalizing; it's half coherent; half junk; Hopefully he'll have a simple (non-scary) answer for me.

[jimandsharynp in reply to JudyJ]

Haven't heard of this type thing connected to PSP but perhaps others have. I'd be more inclined to blame it on eating too late. Perhaps the mix of drugs you are taking? If you hear coyotees and your dog is outside then I'd be getting him back in quickly. A group of coyotees can have a nice meal of him if you don't. Since you had halucinations before and now this experience I'd call your Neuro and not wait for the next visit.

[Garvin]

Hello Judy,

I have a suggestion for communicating across a large house. At a home improvement store you can find wireless door bells. They come with two buttons for sending and a loud receiver that can be placed in a central location in the house. I made pendant from my wife to wear from one of the buttons which she wears throughout the day. She can no longer speak are call out for help, but I always know when she needs assistance. This has worked great for us and I would recommend it for anyone who is in this situation.

Garvin

Rockwall, Texas USA

[jimandsharynp in reply to Garvin]

Garvin, Thanks for the idea. I bought two bells, the type you'd sit on the desk of a hotel or business, but my wife's coordination is so bad she can't ring the bell loud enough. That doorbell may be our answer. Thanks!!

Jimbo

[JudyJ in reply to jimandsharynp]

I thinks this is a great idea and will be checking into it soon.

[laroux in reply to Garvin]

Oh my goodness! how cleaver, my son gave my husband a goose call, you know, one for hunting! lol...extremely annoying, wireless doorbell would be much more friendly!

Joan

[JudyJ]

What an EXCELLENT idea, Garvin. There's Lowe's home building center nearby. Now I just need to find a handy person to help set-up; hand, I'm not. The worry goes both ways between my daughter and I.

She was born with a rare (1:80,000) genetic disease, as was her sister. The acronym is O.T.C., or google urea cycle disorders. Their livers lack the most essential enzyme (OTC) to properly breakdown protein their livers. If the enzyme only partially works and doesn't break-it down correctly to break it don't into a product called urea which is the urninated out of the system, it can cause a build-up of ammonia in their systems, circulate body wide and cause neurological damage. It's X-linked, meaning it can only passed down from the Mother; When they were diagnosed in '97-finally-much damage had been done to Katy. Tho it seems to have stabilized, and probably has much as it will, she has break-thru symptoms, even this weekend, much more that her Sister, Melissa. Have been going to Mayo since '96; they are quite a remarkable health system down there. But everytime I go, with one or both daughter's, I'm always advised NOT to drop my guard not matter how well the may seem. It can just start up again for no reason, but triggers such as a bad case of flue, a bad injury, or the need of surgery with anethesia (anesthesia is NOT a good thing with OTC, either one could be in a coma tomorrow and gone the next.

She's been watching me like a hawk; doesn't like me being up for fear I'll fall.Tho I don't 'watch her like a hawk as I used to those 1st 3-5 years once diagnosed with OTC, I do certainly keep an eye on her; both girls were so bloody sick til I got them to Mayo, then the real work began in getting them well. In fact, I found out via Mayo after receiving their records, but especially from Children's Hospital in St. Paul, and we were there a lot, not once did they test for a high ammonia test in either child? Why? Because they just don't do it? Why? Because it's an expensive test and is so rare, the insurers reject approving it out of hand. And they certainly don't check it a birth.

Our medicl care in the States is totally driven by people in suites and the very strong pharmacutical lobbyiests, female & male, who sit behind desks and make these life/death decisions everyday. Sometimes I wonder if they have souls...

Bet you didn't expect this diatribe in return for answering very helpfully and productively something you know out of experience that will help my daugher & I communicate in this large house...SOORRYY ABOUT THAT...I have NO idea where all that came from; geesh.

Best regards,

Judy

[JudyJ]

Here's a thought. Garvin, I know you're Stateside; Daughterno1, I know you're not. I thought about this before but hesitated to bring it up for fear of sounding paranoid, but I've lived the worst outcome of paranoia when my girls at ages 8 & 9 were sexually assualted by a guy down the street; 2nd & 3rd offenses. Court showed him no mercy; is in prison. Emotional damage to Melissa, in particular was huge. The guy who molested them was part of a church organization helping one of their members re-reoof their house, I type thru gritted teeth.

As, an aside, all this digressing I seem to be doing lately, in addition to possibly allientating people, I sure hope is not Part of PSP picture. Get to the point? What does that mean...??

Back to the point. The area we lived in had lots of cul de sacs but with long walking paths at some of them; was very confusing. So I had the great idea of buying the walky talkies so they could explore their environment; I had 1 with me, the girls got 1 everyother day. It was a goodneighborhood with no obvious creeps.

But then I noticed hearning male voices asking the girls to switch to channel so and so. My gut told me their intentions were less than honerable, so we stopped using them.

I know I'm probably overthinking this, but is there any risk of pervs in the area overhearing us on our channel, tho we wouldn't use it much, who might be able to figure-out our location? Only ask because I've lived the plain crashess....doorbell still the best idea???

Garvin...if it's any comfort...I'm busy for the rest of the day:)

Judy

[Hidden]

Judy I think the doorbell is a great idea especially if there is a chance of speech letting you down albeit temporary. We have the sort that can be plugged in a socket in one room and the bell push is transportable..

Dx

[JudyJ in reply to Hidden]

Thanks - another great idea to look into. I know we're some of the last hold-outs, but neither of us use cell phones. If we did, I could simply speed dialing her which would get her upstairs even if I couldn't speak. Do like the transportable bell idea.

[Kathy]

Hi Judy,

It could possibly be the Thrush infection that's causing some of this disorientation. Mum is always a bit "knocked off" when she has an infection.

However, having said that, in the earlier stages there were several occurrances of her waking up in the middle of the night and not being able to remember Dad's name - they've been married 50 years!! It upset Dad quite a lot

I think the doorbell thing sounds like an excellent idea!!

love Kathy x

[JudyJ in reply to Kathy]

I was supposed to have my swallow test done because of the thrush yesterday, but overslept, was so disoriented, and didn't feel safe even in my own house. Now, it's Monday. Can't tell you how reassuring it is to hear that your Mum was always a bit "knocked off" during those infections.

I'm going out on a limb a bit with translation, but I have been feeling off-my-nut since this started, or like I'm drunk. It was diagnosed the 2-21 & it's 3-22, and have felt like I've been going downhill since. Say really stupid and/or meaningless things at random. And it's just not my Daughter's name Katy I'm starting to forget; I find myself assigning names to people or things that are bizarre; this is quite scary. When I got up this morning, I was so disoriented, I felt like I needed bumper pads on the walls. And it took Katy 5 minutes to convince me it was Saturday, not Sunday.

Really feeling like I'm losing it. Think I scare poor Garvin away. I so hope what I'm experiencing is connected to the thrush and that the swallow study will be able to tell me if I still have. Sure feels like it. At the base of my throat down; it's left me with a very odd cough I've never experienced before that's unrelenting. Just want this thing fixed. Truley and concerned about where the line ends with my regarding reality, and where it starts with this weirdness I'm experiencing.

Very, very tired. Naptime. Take care.

Judy

[Hidden]

This may be a scary thing to hear but it is also an urgent pointer.

I know you are younger than my mum was but every time she had an infection it knocked her down a stage as she was asymptomatic-showed no outward signs until testing proved positive. The only way we would know mum was getting an infection at first was that she would keep falling over , much more than usual, as if she was drunk. She would also say odd thiings like let's get the washing in / let me see you out (when she needed supervision to walk about and there was no washing, being in a residential home).

As infection could take several days to discover each time, she actually dropped down a notch with each one, not least as it would then take a day or so for anitbiotics to arrive and a few days for them to start working. It was like walking down a flight of stairs with an infection being like a stair with a hole in it or a plank missing.

. A UTI last August nearly took her from us- she was at death's door for 2 days and we began grieving and considering making funeral arrangements and it was only iv antibiotics that brought her back from the brink, albeit amazingly quickly. It then meant she was moved to the nursing block as she could not stand or feed herself and it took a month of sheer will power to get back to walking and holding a cup in her hand and nothing was as good as before. The last UTI she had (day after Boxing Day) knocked her into end stage in one day. She was bedbound from then on and lasted only 6 weeks more. SO my message to you is to get EVERY single infection treated IMMEDIATELY. It may not be life threatening at the moment but each one can be the difference in how long you hold out in the long term of things.