I think I fired the neurologist.

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Spiky Bugger

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Her assistant asked what she should tell her I said. I said, “Tell her she‘s incompetent.” So maybe she’ll fire me. Let’s go with a metaphorical example.

Say you were walking funny in 2014, and an X-ray showed you had broken your left ankle. Things were mostly stable, but suddenly, in 2021, you started dragging that leg. And in 2022, there were TIMES when you could barely walk. So you go to your new doctor. Imaging is ordered. You get a letter stating, essentially that ”no action needs to be taken because no changes are revealed on the new X-ray.”

My response: Of course there is no action needed on non-existent changes. But action IS needed because the patient’s problem has not been addressed. The doctor COULD show some interest in why there are new PROBLEMS and maybe even seek a REASON for those problems. She might find that there’s a tumour in the hip! But she won’t find it if she won’t look.

AND THEN…her assistant says that the visit summary says “you were told to check with your insurance company to see what further testing might be covered.“

A few of you may have noticed that I’m not generally a delicate f’ing flower. I told the assistant that FIRST, I do not have an HMO, I do not need to ask my insurance for permission, and that it was presumptuous of the doctor to assume that I would limit my (actually my husband’s) medical care to only those services covered by insurance. And, for the record, I still have checks left so I must be able to afford whatever is needed. AARGH!

This is, of course, about MrSue’s brain. Imaging says no new bad things. But that doesn’t mean we don’t bother to figure out:
•WHY he tried to drive out of the garage with the SUV hatch door open. (Probably a couple grand in auto repair and a new garage door.).
•Instead of saying, “I’m having trouble reading the tv screen” (8-10 feet away), he’d just walk over to the television to have a better view. He cannot read prescription labels. I finally nagged him into an ophthalmologist visit. Cataract surgery is scheduled for February. But he just kept going blind until I noticed there were problems with his vision.
•We got new flooring in a bathroom and laundry room. We went to Dunn-Edwards. We studied paint chips, purchased about $50 worth of paint samples, tested areas on walls and made a decision. THEN, he decided to take a piece of flooring with him to purchase the paint but NOT TAKE a paint chip or the name of the paint we had selected. He came home with an ALTOGETHER TOO DARK paint that was not even close to what we had decided on. I asked him why he didn’t come back for the paint chip or call me for the name of the paint. He doesn’t know why.
•If he can’t “fix” whatever is wrong in one or two tries, he gives up. As in:
Him: I can’t get in to the VA website. My computer is not accepting my fingerprint.
Me: What have you done to resolve the issue?
Him: I stopped trying to sign in to anything.
•And on and on.
 
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Her assistant asked what she should tell her I said. I said, “Tell her she‘s incompetent.” So maybe she’ll fire me. Let’s go with a metaphorical example.

Say you were walking funny in 2014, and an X-ray showed you had broken your left ankle. Things were mostly stable, but suddenly, in 2021, you started dragging that leg. And in 2022, there were TIMES when you could barely walk. So you go to your new doctor. Imaging is ordered. You get a letter stating, essentially that ”no action needs to be taken because no changes are revealed on the new X-ray.”

My response: Of course there is no action needed on non-existent changes. But action IS needed because the patient’s problem has not been addressed. The doctor COULD show some interest in why there are new PROBLEMS and maybe even seek a REASON for those problems. She might find that there’s a tumour in the hip! But she won’t find it if she won’t look.

AND THEN…her assistant says that the visit summary says “you were told to check with your insurance company to see what further testing might be covered.“

A few of you may have noticed that I’m not generally a delicate f’ing flower. I told the assistant that FIRST, I do not have an HMO, I do not need to ask my insurance for permission, and that it was presumptuous of the doctor to assume that I would limit my (actually my husband’s) medical care to only those services covered by insurance. And, for the record, I still have checks left so I must be able to afford whatever is needed. AARGH!

This is, of course, about MrSue’s brain. Imaging says no new bad things. But that doesn’t mean we don’t bother to figure out:
•WHY he tried to drive out of the garage with the SUV hatch door open. (Probably a couple grand in auto repair and a new garage door.).
•Instead of saying, “I’m having trouble reading the tv screen” (8-10 feet away), he’d just walk over to the television to have a better view. He cannot read prescription labels. I finally nagged him into an ophthalmologist visit. Cataract surgery is scheduled for February. But he just kept going blind until I noticed there were problems with his vision.
•We got new flooring in a bathroom and laundry room. We went to Dunn-Edwards. We studied paint chips, purchased about $50 worth of paint samples, tested areas on walls and made a decision. THEN, he decided to take a piece of flooring with him to purchase the paint and not a paint chip or the name of the paint we had selected. He came home with an ALTOGETHER TOO DARK paint that was not even close to what we had decided on. I asked him why he didn’t come back for the paint chip or call me for the name of the paint. He doesn’t know why.
•If he can’t “fix” whatever is wrong in one or two tries, he gives up. As in:
Him: I can’t get in to the VA website. My computer is not accepting my fingerprint.
Me: What have you done to resolve the issue?
Him: I stopped trying to sign in to anything.
•And on and on.
Ohhhh, Sue! I feel for you. Would you believe Bill did exact same thing, backed out of (tried to until I ran screaming out the door) the garage and back hatch of Honda Odyssey van was up. Guess we were lucky because no garage damage and only scrapes and scratches in paint of the van. But those just match the scratches and small dents he already had put on it by hitting side of garage door when trying to back it out. I now do that, as well as 99% of the driving.
I also recognize the other characteristics as well, such as not sticking with something if it’s not easily fixed or figured out first try.
Does your husband repeat himself and or forget things? Bill will ask me 5 or 6 times if I think the mail has run in the span of 30 minutes some days. I can serve same food over and over and it’s new to him each meal, I could go on and on.
In our case, the neurologist ordered memory tests about 2 1/2 years ago that did show cognitive problems, he thought vascular in nature…now he had tests repeated last month and we went Monday for the report and was told he showed considerable decline from last time (yeah, I knew that!) and to make a long story not quite as long, he now feels certain it’s not vascular but rather beginning stage of Alzheimers. Granted, I had my suspicions but to hear the words said out loud are a gut punch. I don’t know what’s causing your guys problems but you might ask for memory type testing for dementia, etc. Of course Bill turned 80 in October so he is older than Mr. Sue, right? Whatever the cause, I feel your pain, and hope it has a fix rather than being any form of dementia.
Susan
 
Oh Susan, gut punch indeed! And no less sad just because he's 80. Aricept seemed to help my Dad some, though it isn't a cure. Something for you and the doc to consider, maybe.
 
Susan in Tennessee I had a thought while mopping the floor upstairs for the first time. I mop first with Murphy’s oil soap, then with Bona, then with Bees wax in rooms I can close.

Anyway, do you know if the neurologist even considered Normal Pressure Hydrocephalus for your husband? It presents much like Alzheimer’s. But unlike Alzheimer’, there is a treatment (not a cure but acts much like a cure). https://www.alz.org/alzheimers-deme...pes-of-dementia/normal-pressure-hydrocephalus
Your husband is on the high side age wise but don‘t let that get in the way. My husband was diagnosed in 2006 at the age of 46, far younger than typical. In fact, one neurologist said he didn’t consider it due to his age. Another, I fired for saying he couldn’t have it, he was too young and he already had his ventricular shunt.

Make sure that is considered before just accepting Alzheimer’s. Insist on seeing the brain MRI.
 
Oh Susan, gut punch indeed! And no less sad just because he's 80. Aricept seemed to help my Dad some, though it isn't a cure. Something for you and the doc to consider, maybe.
Oh Susan, gut punch indeed! And no less sad just because he's 80. Aricept seemed to help my Dad some, though it isn't a cure. Something for you and the doc to consider, maybe.
Thanks, Larra. He’s on the generic form, Donepizil, (low dose), since the first memory test, even though we were told it was debatable whether it helped vascular dementia or not. They now want him to double the dose, and I’ve already done that. I’m glad it was prescribed when it was.
 
Susan in Tennessee I had a thought while mopping the floor upstairs for the first time. I mop first with Murphy’s oil soap, then with Bona, then with Bees wax in rooms I can close.

Anyway, do you know if the neurologist even considered Normal Pressure Hydrocephalus for your husband? It presents much like Alzheimer’s. But unlike Alzheimer’, there is a treatment (not a cure but acts much like a cure). https://www.alz.org/alzheimers-deme...pes-of-dementia/normal-pressure-hydrocephalus
Your husband is on the high side age wise but don‘t let that get in the way. My husband was diagnosed in 2006 at the age of 46, far younger than typical. In fact, one neurologist said he didn’t consider it due to his age. Another, I fired for saying he couldn’t have it, he was too young and he already had his ventricular shunt.

Make sure that is considered before just accepting Alzheimer’s. Insist on seeing the brain MRI.
Thank you, Liz. I’ve been reading at the link you included above. I will certainly bring it up when we see the neurologist this week.
 
Susan, :hugs:

I Went to PubMed, searched on LEFT CEREBELLAR INFARCT COGNITION and limited the results to past five years.

And one thing I read, not on PubMed, mentioned that because there currently exist no tests that establish a connection between the stroke and cognition, many physicians are sticking with the OLD standard, that such a stroke impacts only balance.

In case you’re not familiar with it, this left cerebellum stroke is called a “silent stroke,” because it doesn’t impact (at first, anyway) speech or gait. Like MOST people with this problem, it was discovered accidentally.

Anyway, my “child groom” just turned 70. Some of the weird stuff started when he was about 60-62. By the time we’re 80, at least 25% of us have had one or more silent strokes…and most don’t know it.
 
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Hugs Sue and Susan both. It's so hard to have a loved one experiencing cognitive challenges. :( Wish it weren't so. While important to seek the appropriate diagnosis and treatment / suport for the patients, If I may, it is also important for caregivers to have support. It likely would be helpful to join a group or seek counseling. Wishing you the best.
 
Hugs Sue and Susan both. It's so hard to have a loved one experiencing cognitive challenges. :( Wish it weren't so. While important to seek the appropriate diagnosis and treatment / suport for the patients, If I may, it is also important for caregivers to have support. It likely would be helpful to join a group or seek counseling. Wishing you the best.
Thank you! Yes, I agree and am doing lots of reading and research to get prepared for what the future holds.
 
This is, of course, about MrSue’s brain.
to make a long story not quite as long, he now feels certain it’s not vascular but rather beginning stage of Alzheimers.


I am so sorry. I cannot think of what could be worse than watching a spouse having these issues. for the patients themselves, I don't think it's as bad as it is for you trying to take care of them.

:5grouphug:
 
Thank you Ladies for sharing your journey. My DH has attempted to back his 1940 Nash out of the garage with the garage door still closed as well as other things mentioned. I have finally gotten him to make a Dr appt next month (we moved in 2022, he trusted his old Dr) so the journey begins...
 
Thank you Ladies for sharing your journey. My DH has attempted to back his 1940 Nash out of the garage with the garage door still closed as well as other things mentioned. I have finally gotten him to make a Dr appt next month (we moved in 2022, he trusted his old Dr) so the journey begins...
Make sure you read up and ask about NPH as well.
 

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