Ooops, I DiD It Again

[JudyJ]

On 2-8-13, I wrote a blog entitled "PSP Story With A Touch Of Humor". The gist of it was I'd laid down about 1:30 for a nap. I awoke around 6:30, feeling refreshed and absolute that it 6:30 a.m. the next day, not 6:30 in the evening. Clues were all around me that it was the same day, but the evening. I discarded each & every clue. I let the dog out & made coffee. Then I decided to poke fun at my daughter in college who is harder than hard to wake up in the morning. Started sending her texts to get-up, not expecting any in return, or if I did, annoyed ones. Suddenly we were texting to/from; I was receiving the sweetest messages from her; serioulsy; especially for that time of day. I thought "Wow-college is sure doing her good!" Then my friend called shortly after 7 who knows I'm not a morning person either. I answered and said "You know not to call me this early in the morning..." I was teasing her, but just heard silence, then thought, uh oh, did someone in her family die, or some kind of crisis happen? Then she said "But Judy, it's the evening!" Grabbed my clock and stuck it in my face; sure enough, with clues and much evidence to the contrary, I was wrong. The joke was on me.

I've had it happen where I woke in the morning, confused about what day or time it was, but it would pass quickly. Or take a nap & wake up disoriented about what day/time it was which would also pass quickly. What I don't know if I can explain very well is how set I was in my set of facts, and clues were not clues; they were meaningless.

It happened again last night. I told my other daughter I was tired, & was going to nap for no more than a few hours. Woke-up at 6:15. Let the dog out. Made my coffee. Started my laptop which contains a million clues by itself...

Shortly before 7, one of my favorite aunt's started messaging me. Asked me how I was feeling. Told her "I'll have to get back to you later in the day on that one." Very sadly, one of my Mom's sisters, Karen, a very young & spirited 66 year-old, suffered a massive stroke following a simple medical procedure last week. I messaged her back and said "You know about Karen, right?" She replied, "Yes, in fact your Uncle Jack is talking to your Mom right now and getting updated."

Huh? Made no sense to me. It was too early in the morning for all of this. Then I got worried maybe she took a turn for the worse over night and called my Mom. Yup, sure enough. In spite of my CERTAIN, WITHOUT A DOUBT set of facts I was working within, it was the evening, not the morning of the following day.

Once again, in spite of clues around me to orient me, they were meaningless. This time it wasn't funny. Both of those episodes last 30 + minutes.

On a Friday a couple of months ago, I ordered a refill for a med I've taken for years. Something about it got messed up, and the Pharmacist called later that Fri stating everything was straightened out and I could pick it up Saturday morning, which I did.

When I got back, I opened the bottle, shook a pill onto my palm, and thought 'hmmm. It's not the right color; it's supposed to be white, not peach. And it has writing on it; never saw that before. But I took it anyway.

The pharmacist called later Saturday afternoon to double-check everything was straightened-out. I told her the color of the pill was wrong and it had writing on it to boot. She looked it up in her book and tried to assure me I got exactly the right thing.

Sunday morning came around, and took the bottle to the pharmacy from my old neighborhood; it's the same pharmacy company. There I stood on the other side of the counter trying to explain the situation (non of the regular staff were there) and in quite a huff. A long line had formed behind me. I was both huffing & cringing. So she brought a large bottle back to the counter, the bottle they actually dispense it from into smaller doses. She took a pill out and had me take one of mine out -exactly the same. I still wasn't convinced. Told this poor lady AGAIN that the color of that med was white.

I huffed my way back to the car, totally unconvinced, and thinking now what should I do?

Later that Sunday, I was doing some random chore when out-of-the-blue, it started washing over me. Yes, in fact, that med was always peach-colored and I'd confused it with a different me. Just like that. It came back to me, after 2 days of being dubious, then add in huffy. Totally acting within my own set of facts. That just weren't true.

Last Monday, I went to a local station I use often to get gas. Lunch hour was starting, and the aisles were filling up fast. My vehicle is a '96 Dodge Grand Caravan. Original owner; paid off long ago.Yup, after 16 years, I know her like the back of my hand. Only 153K miles on her; not bad. I call her Vanette to show her respect; she's an old lady. I also have been calling her 'my hearse' for the past few years cause I cannot afford to buy a new car or even a used care; so she gets good treatment. Oh, the hearse-thing; it my gallows humor; a coping mechanism.

My driving skills aren't what they used to be; peripheral vision is shot, amongst everything. Never did learn to parallel park, not even when I had a small Toyota. Took my driving test in the 70's in an Olds Delta 88; it was like a pontoon on wheels; eeked by on the test.

So there I was, manuevering in and out of the aisles, determined to nab a spot. It was like a stealth operation....so you know, that's not me...

Took about 10 minutes of a careful execution, and 'viola! I got my spot, turned off the engine, and saw I was on the wrong side of the pump. I swear, I swear...I have never done that before. After 16 years, I know what's wear. Until Monday.

Okay, so there you go. This business of operating and totalling believing in my own set of facts, wrong as they were, was a bit disturbing.

My Neuro appt. was Wed., thank God. I told him about the 3 that occurred (last night's the 4th). I asked him "What Is That??!" Then I asked him if he'd heard of anything like that before.

He said sure. It's part of PSP and damage to the frontal lobe from which executive functioning comes from, but it also happens with persons who have dementia from other causes. He said short term memory is complicated, long-term memory is complicated, put them together and it's very complicated.

So, it was a relief to know he knew what I was talking about and wasn't surprised by it. During December, he put me on a short-term memory med called Namenda. But after what I described on Wednesday, he said it's time to shoot at the same problem with 2 guns, not just one. I'm okay with that. It's bizarre to experience a block of time in which things happen to help with my orientation, yet it was meaningless to me except for what I was so certain of.

So he sent an RX via his laptop to the wrong drugstore; think it's straightened out now and can pick it up. It's Donepezil which is the generic for Aricept. He did say it has more side affects than the Namenda; didn't say what they were; also fine with me. Never experienced side affects from the Namenda.

Wish me luck; boy, I need to get my head on straight; I have enough challenges and don't have time for these mental side trips.

[Hidden]

I do worry that you are still driving. If everyday things like tablets seem different and you are convinced, how will you know if you make the wrong decision when driving? Mum was never a brilliant driver, having passed her test at the age of 54. She would often misjudge a kerb or break her wing mirror on things even early on but it got worse when she hit 70 and when dad went into a home we persuaded her it was an expensive luxury when we could take her wherever she wanted and that even taxis to anf from the home worked out cheaper in the long run. But I firmly believe she had peripheral issues even then. If you do keep driving, listen to friends-if they hint , best take their advice as you may not realise yourself the subtle deterioration going on. My mum started slurring her words but didnt notice. She was amazed when we told her.

take care xx

[JudyJ in reply to Hidden]

I know, I know, I know. It's weighed heavily on me for a long time. Please see my response to Kay1. My gut tells me strongly to go for the therapies, all in one building, 6 miles down the road, because the positive benefits from them can greatly improve some of my other symptoms. I know it's risky. Wouldn't be able to forgive myself if I hurt my daughter or someone else due to my driving skills. I don't like being in this situation at all. There is no public transportation to get there, my oldest daughter doesn' drive, and I don't have those who are close to me with the ability to drop what they're doing to give me rides to and from, especially during the day. If I were to give it up it would lead to isolation my depression can't afford, as well as my daughter with special needs. I need to give these therpies a chance; I'm staying positive, as well as feeling a positive inution, a good, hard try. May help reduce/improve many symptoms I'm experiencing which may make whether I'm fit to continue driving a non-issue.

[kay1]

i agree with the driving comments, Frank gave up his license even before PSP was diagnosed and it was just balance issues. Accidents happen so quickly and easily and I am sure the side affects of medication cannot help your concentration

[JudyJ in reply to kay1]

I know; it's been weighing on me heavily for months. I would like to give these therapies a good chance and work at it. I'm hoping it will improve my physical strength including balance, the OT to help with memory and executive funtioning skills, and the speech therapy to help with my swallowing and reduce aspiration and this nagging thrush, as well as help with articulation. What I'm able to write on these posts isn't a reflection on how well I can verbalize them, that's for sure. The rehab center is 6 miles down the road. My gut tells me to go for it and many positives will come from it, but my logical side tells me it's risky. Hard situation.

[CyndyLouBlue]

I have looked on Amazon.com and for $26.95 you can get an alarm clock called the MedCentre 4 Alarm that has a green button you push and it will speak to you and say, for instance, "Good Morning, it's 10 o'clock" or Good Evening, it's 6:30". Might be helpful. Also, here in England the pharmacy will dispence all meds in a weekly tray that is divided up Morning, Lunch, Supper and Bedtime and for every day of the week. The appropriate pills are in each slot and covered with a little individual cover so you can tell at a glance if you have taken the right pill at the right time. It seems to me that the two things together might be a comfort to you. Good luck.

Also, as hard as it may seem, if you are driving with a diagnosed issue like PSP you may have problems with your insurance should you have an accident. Please be careful.

[JudyJ]

Thanks for your input about car insurance/PSP; another thing to consider for sure.

I will get the clock you described from Amazon; sounds perfect, particularly since so many 'clues' going on around me during these events which should orient me don't even matter to me; so hard to explain. But this clock sounds quite helpful.

I do have 2 7 day med containers and they do work wonderfully, at least so far. One is for prescribed meds, the other, supplements I take. Thanks for that advice as well. Going foward, should I continue to have issues with memory or confusion, that kind of additional organization with meds would help a lot. Will check with my pharmacy for this type of service.

Thanks, CindyLou.

[hicval]

CindyLou,

You are an exceptional person..you've been diagnosed early enough, and you've accepted your diagnosis, such that you have an amazing awareness of what's changing in your abilities. My loved one has locked away his understanding of his condition. It is buried beneath. All he does is watch movies. Like you, he had an amazing mind, and great self-awareness and awareness of realities. But he didn't have the timeliness of diagnosis and the openness you have to narrating your experience. You are a marvel. Thank you. Please continue to tell us.

V

[JudyJ]

Wow, CindyLou, you can't know how much your post means to me; seriously. I still have mastery over writing, and want to keep posting as long as I can. If it helps anyone at all, it's totally worth it; helps me as well. I've kept journals most of my life; I find writing my feelings down actually takes some of the power away of a situation. I've been a little concerned I've been 'over-doing' it on this site, but feel this urgency to get it on paper, or cyber-paper.

Im so sorry your loved one seems to have retreated into himself; that has to be awful if not unbearable to see some times.

Thanks again for the positive feed-back and compliments. It does help a lot. You put a smile on my face for the day ahead.

Fondly,

Judy

MN, USA