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+--- Thread: I'm more broken than you (/showthread.php?tid=270)
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RE: I'm more broken than you - Greg - 07-21-2023
Oof. I do not like the sound of 'notable abnormalities'. Hoping for the best.
RE: I'm more broken than you - Drunk Monk - 07-21-2023
That sounds intense.
Notable abnormalities would make a good band name. Hopefully that’s all it is.
RE: I'm more broken than you - cranefly - 08-10-2023
Haven't heard from the neurologist since the scan. Very odd. I didn't trust my tactfulness at this point, so I let LCFi communicate with him with this missive:
Hi, Dr. XXXXX--
Lori White (Gary Shockley's wife) here. He knows I'm writing this note and has approved it.
We received the results of the NMRI but we have to admit we're a bit surprised that your office hasn't contacted us regarding a follow-up visit to discuss the results in more depth. The information we received from your colleague basically just reiterated what you (and we) suspect as well as your conclusion that physical therapy and exercise are currently the most useful tools for preserving function for as long as possible.
We do still have questions. For example, did the imaging give you a better idea of where Gary is in the course of the disease? Is there a timeline (even tentative) for its progression, and what might that look like? Various websites such as the MSA Coalition website spoke in generalities about symptoms but gave little information about what we should be looking for and when, and when to notify you about changes or whether to approach his other doctors (for example, his urologist for urinary issues, a gastroenterologist for constipation, his sleep specialist for RBD, etc.).
A phone or video visit would be fine.
Thank you--
CF again. Then after a couple days, we got this:
I already asked my staff to schedule follow-up appointment to go over this in more detail, they just have not called you yet. I apologize for the delay in setting up the appointment, after returning from vacation there is a mountain of messages to catch up, so I admit my request for the follow-up visit was delayed. These are all great questions that we will review during the appointment.
Best Regards,
XXXXX
CF again. Whether he acted before LCF's missive or after remains a matter of conjecture. BTW, while he was on vacation, guess who he had cover for him? Yep, my first neurologist, the one that I feel was highly dismissive, and whom this new neurologist has staunchly defended. Makes me feel a bit queasy....
To be clear, I suspected MSA last May and mentioned it by name. I asked my first neurologist if the brain MRI showed anything. She said no but said she'd recheck it and have a colleague do the same. She got back to me and said no. What she didn't tell me is a plain MRI isn't a good test. She should have prescribed the NMRI witrh dye, in my opinion.
Then I told her about my history of physical dreaming. I had read in the literature that it is associated with neuronal damage in the cerebellum and is one of the hallmarks of MSA. She simply said, "Oh, that's a sleep problem, You should see a sleep specialist. Then she offloaded me to them. She couldn't get rid of me fast enough. It seems she's telling me, "You're old; deal with getting old problems." I do expect some downturn, but I was doing 10 pull-ups and 25 crunches during a single hang from a bar at 70, and at 72 1/2 I can barely walk.
So, yeah, I begrudge her. With my typing skills of last year, I could have tackled my secret project a whole lot easier than it is now with my eror-prone touch-typing.
Still waiting to hear about a follow-up.
later, CF
RE: I'm more broken than you - Greg - 08-10-2023
Why is healthcare the opposite?
I'm available to punch people.
RE: I'm more broken than you - Drunk Monk - 08-10-2023
While my maladies (which shall be outlined in the forthcoming 'near death in Yose' episode) aren't as severe, I too messaged my doc who was on vacation. I was answered by a surrogate, who gave me flippant useless advice (I was already doing that). I need to follow up like LCF did.
Healthcare is a right, not a privilege
RE: I'm more broken than you - cranefly - 09-20-2023
Okay, LCF and I got together with DM today for our 24th anniversary. Of all places, we ate at Marie Callendars. I only mention this because we already told DM this story. But for the rest of you...
This happened in Wenatchee, WA, while visiting LCF's sister Terri and her husband John. So, we’ve prepared dinner and decide to eat downstairs where we can watch TV. I can make it down the stairs, because the railings are solid and close enough to grip together. Lady Cranefly does a couple extra trips getting my plate and drink down. Out of kindness Lori’s sister Terri gives me the remote and carte blank on what to watch. First we watch a glass-blowing show, mostly for Lady Cranefly’s benefit. After that-- Well, we no longer have Netflix, but they do, so this is the perfect opportunity to watch Black Mirror’s first episode which features Salma Hayek (recommended by DM).
It’s an enjoyable enough experience, though I don’t follow it all, because I left my hearing aids upstairs and don’t want to trouble anyone to fetch them. When it’s over, we decide to go upstairs into the living room for a bit.
It takes me a couple tries to get up from the sofa. Not surprising, and it happens fairly often. But when I do get up, I realize something is terribly wrong. My condition has gotten much worse. I manage to make it up the stairs, by pulling myself up by the banisters. But at the top, I can barely stand. I don’t want to tell anyone, so I retreat into the living room and sit down.
The others chat a bit, and then John and Terri go to bed early. This is normal. I then ask Lady Cranefly if she will carry my laptop into the bedroom. She says of course. “And then,” I say, “come back and get me.” She doesn’t understand at first. So I tell her, “It’s gotten a lot worse.” And it has. Up to now, there’s been no dizziness. My balance is crap, but I just don’t know my boy’s orientation. No Mr. Bedspin, which I’m familiar with from past (rare) drinking excesses. But now I’m dizzy, and somewhat nauseous from it. And my arms-- I can’t judge their weight. When I hold them out, they float all over the place. I’m thinking this has advanced to the point I may not be able to remain productive.
Lady Cranefly helps me into the bathroom, and I need help in there. Then she helps me into bed. Somewhere in all this she mentions feeling high herself. And she encourages me to wait until morn and see how I feel then. I am not hopeful at all.
Come morning, I feel the same. I get up, navigate with the wall into the living room. I drink a coffee, then another, and only then do I start edging out of it.
So indeed, Lady Cranefly was right. Terri and John make marijuana-laced butter. Not that we had any butter, but the remains are called crumbles, and they are kept in a dish up on a shelf. Terri insists it stayed up there, and we’d have to work to get into it. But Lady Cranefly and I are of the opinion that it was set down with the rest of the food, right next to and very similar to a bowl of salt and a bowl of pepper.
So, yeah, we dosed ourselves. I really dosed myself, unless I’ve gotten hypersensitive to weed. It wouldn’t be the first thing. I used to cut all the onions to spare Lady Cranefly the tears. It never phased me. Now Lady Cranefly has to do it. If I try, I end up in a sneezing fit, unable to see, eyes watering like mad, endlessly blowing my nose, out of commission for 20 minutes. I’ve also gotten hypersensitive to getting shampoo in my eyes. After the last episode, it took me over a day to recover. Now I use J&J Baby shampoo, known to be very mild. Even then, I keep my eyes tightly closed.
The moral of the story is, don’t get what I have.
RE: I'm more broken than you - Greg - 09-20-2023
In better news, we no longer put marijuana in our food so you should be safe when you come up. Well, safe from getting stoned by eating.
RE: I'm more broken than you - Drunk Monk - 09-20-2023
I was only dosed once without my knowledge. It's super weird. You think your going insane or having a stroke or something.
I was at a Dead show tho, and with a ticket. I remember listening to Jerry thinking 'My god. He's so good. Wait... he can't be that good." I dashed into the bathroom to look in the mirror and my pupils were so blown that my eyes were almost solid black. It became funny afterwards. I still have no idea how I got dosed that night.
I've had plenty of situations when I got got higher off edibles than I thought I would. Edibles hit harder. And there's that rookie mistake that stoners often make (because we forget) where you think that edible was bunk so you eat another before the first one hits and you end up double dosing yourself.
RE: I'm more broken than you - Drunk Monk - 09-20-2023
(09-20-2023, 12:16 AM)cranefly Wrote: I used to cut all the onions to spare Lady Cranefly the tears. It never phased me. Now Lady Cranefly has to do it. If I try, I end up in a sneezing fit, unable to see, eyes watering like mad, endlessly blowing my nose, out of commission for 20 minutes.
https://www.allaboutvision.com/eyewear/specialty-eyewear/onion-goggles/
I use the RVSPs. They're good and I look sharp wearing them.
(09-20-2023, 12:16 AM)cranefly Wrote: I’ve also gotten hypersensitive to getting shampoo in my eyes. After the last episode, it took me over a day to recover. Now I use J&J Baby shampoo, known to be very mild. Even then, I keep my eyes tightly closed.
How about tabasco? Are your eyes sensitive to that?
The more I think about this, the more I think Mrs cf was spot on when she said you should've done an immediate eye was with her contact solution. I've done so many eye washes in event med.
You could also wear goggles.
RE: I'm more broken than you - cranefly - 09-21-2023
(09-20-2023, 10:16 AM)Drunk Monk Wrote:The chocolate ghost peppers look almost ripe. I'm saving my eyes for them next.(09-20-2023, 12:16 AM)cranefly Wrote: I’ve also gotten hypersensitive to getting shampoo in my eyes. After the last episode, it took me over a day to recover. Now I use J&J Baby shampoo, known to be very mild. Even then, I keep my eyes tightly closed.
How about tabasco? Are your eyes sensitive to that?
RE: I'm more broken than you - Drunk Monk - 09-21-2023
Video or it didn’t happen…
RE: I'm more broken than you - King Bob - 10-27-2023
Got my blood test results and all was fine except for a high potassium level. Not very high - 5.5 with 5.3 being the top of the normal range, and only over 6 considered very high. Not sure why it's that way. A quick online search told me that damage to blood cells during sample collection can cause it. And to avoid milk and chocolate and peanut butter. I eat peanut butter almost every day, and a slice of cheese almost every day, and have been eating chocolate often recently. Maybe that's why.
RE: I'm more broken than you - Greg - 10-27-2023
Bananas? Lots of potassium in them.
RE: I'm more broken than you - King Bob - 10-27-2023
Haven't had a banana in ages, so not that. I seem to remember that my mother had an ongoing high potassium thing, so maybe genetic.
RE: I'm more broken than you - Dr. Ivor Yeti - 10-27-2023
Meh. Life without cheese, chocolate, and peanut butter is not worth living.