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Re: I Will Survive! [Re: kml] #2902807
08/28/20 12:19 AM
08/28/20 12:19 AM
Joined: Jun 2015
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Massachusetts
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are these books helpful for someone with a lewy's body dementia diagnosis?

Originally Posted by kml
Life is just rolling along here. CMM is enjoying his break from chemo and noted this morning that his mustache - which had been thinning from the chemo- is growing back in. We worry of course about the tumors growing but I think on the whole this break has been good for him. Too bad we can't get out and do things to make the most of this time, due to the pandemic.

Saw a new patient yesterday who at 62 is having signs of dementia. For any of you out there dealing with a loved one with this, there's a fantastic couple of books written by Dr. Dale Bredesen, a neurologist and neuroscientist, on his work reversing mild to moderate Alzheimer's disease. I've read his studies and seen him speak - it's really great work. Ideal prevention too for those of us who carry ApoE4 genes.

This patient I think will fall into the "toxic" subtype - his work history suggests exposure to mercury and to various other toxic chemicals, which can trigger dementia. He's getting bloodwork to help determine what's contributing to his early onset. It's a good challenge to be working on. I do believe I can help him.

Whenever I think about retiring - which theoretically I could do now, if I cut back, although I'd like to be more financially secure - I think about how much I would miss working on cases like this. I'll probably never retire, just cut back to very part time eventually. It's good to have work that you enjoy.

(Of note - re: that patient - I had him draw me a clock face, a common test for organic brain disease. His, not surprisingly, was wonky, with 4 numbers on one half and the rest all squished into the other half. My sister pointed out to me that this test will be worthless in 20 years as the younger digital generation can't read clock faces!)





M 20+ T25+
S 15.5 (BD)
BD 4/6/15
H moved out 4/24/15
D Final 12/23/16
When God gives you a new beginning don't repeat the same old mistakes. It's 2020, anything could happen; eat dessert first!!!!
Re: I Will Survive! [Re: kml] #2902825
08/28/20 04:21 PM
08/28/20 04:21 PM
Joined: Jan 2003
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kml Online OP
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They may be. Even though the books are aimed at Alzheimerís, most of the interventions are just about general good brain health, so I think it will end up being useful for other types of dementia as well. Even in severe Alzheimerís, where it was too late to reverse it, he saw improvements that made life much easier for their caregivers.

Re: I Will Survive! [Re: kml] #2902929
09/01/20 04:50 PM
09/01/20 04:50 PM
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Update on my young patient with the probable neuromuscular disease. He FINALLY got to see the specialist neurologist in his HMO that treats people with this disorder. It was a TOTAL bust. She told him she could "recognize it across the room" and that he didn't have it. She did just a basic neuro exam but made NO attempt to elicit the symptoms (in this particular disorder if you ask a patient to repeatedly contract a muscle it will get weaker and weaker. ) Then with no further ado she declared his disorder as "somatoform" (all in his head) and when he asked about treatment was told curtly to just go back to his psychiatrist!

(Btw - if you only diagnose the cases you can "see across the room" you are DEFINITELY missing cases!)

I was so mad, I had steam coming out of my ears. So I called up a local private neurologist who is listed on the foundation list for people with this disorder to get a curbside consult. I asked her "I need to know if I'M crazy or they are?". I reviewed the case history with her and his symptoms. Her first question was "have they done a repetitive stim EMG?" which is the next logical step in the workup - which of course they will not. She said it really did sound like the disorder I think it is and agreed with my plan to go ahead and try him on the medication that is usually used for this to see if he improves (that would be diagnostic also). She was just as appalled as I was at his treatment by them. It was such a RELIEF to have my assessment validated. It;s pretty disorienting when something looks just like a duck and quacks just like a duck and the specialists are saying it's not a duck.

He'd have to pay out of pocket to go see her but if this works I'm going to fight to see if we can get his HMO to approve him seeing her.

It makes me so mad because I know what is happening here. It's a combination of arrogance ("how dare the patient look up their symptoms on the internet and ask for a workup for the disorder that EXACTLY MATCHES his symptoms? Doesn't he know I am the almighty poobah?") and prejudice ("this obese trans man with a bipolar diagnosis makes me feel weird so I can't see past that to see what a genuinely kind and smart person he is and treat him with respect").

Re: I Will Survive! [Re: kml] #2902934
09/01/20 05:59 PM
09/01/20 05:59 PM
Joined: Apr 2016
Posts: 3,365
Canada
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AndrewP Offline
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Maybe there's a secret "Loyal Order of Water Buffaloes" that they all belong to?

Given the number of secret societies you've got down there, who would notice one more? laugh

Glad you are advocating for your young friend.

CMM is about to go back on his chemo soon I would imagine?

How have you been doing? Still playing or just randomly percussing things around the house?


On BD
H52, W50
T27, M26
S21, D23
BD-9-Mar-16
D-15-Jan-18 Final-19-Apr-18
I am a storyteller. The story may do you no good.
But a story is never for the listener. It is always for the one who tells
Re: I Will Survive! [Re: kml] #2902936
09/01/20 06:22 PM
09/01/20 06:22 PM
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No gigs so I've been lax about practicing but I'm gearing up to start taking some online lessons which would motivate me to play more.

CMM will find out about chemo at his next appointment which is in a week I think. I would expect they would start him back on something then but maybe not. He's still feeling pretty good except for his back pain which is a chronic problem from before his cancer, and his peripheral neuropathy which was present before but aggravated by the chemo. He had a poor night's sleep last night due to pain but when he got up this morning he found his evening dose of morphine on the floor so.....

As for my young friend - it's frightening to thin about where he would be without an advocate. Even though he's done a pretty good job of advocating for himself because this is not his first rodeo, he's pretty much come up against a brick wall with his HMO. I imagine he'd just have to wait until his symptoms are critical and he has to be hospitalized? It's really unacceptable. Even if they legtimately think his neuro exam doesn't fit and this must be somatoform, there's a kind, appropriate way to validate the patient as you tell them this, then there's a rude dismissive way. This was rude and dismissive and that's just not acceptable.

Re: I Will Survive! [Re: kml] #2903069
09/03/20 05:02 PM
09/03/20 05:02 PM
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kml Online OP
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Today we raise the medication dose on my young patient. The way you dose this med, you start off with a low dose to assess side effects (can cause diarrhea, nausea, excess saliva and bronchial secretions) so you can add medications for those if needed. So far this has gone well, and he even seems to be having a slight treatment effect in his leg at the appropriate times (the drug kicks in about an hour after taking it, and wears off in 4-5 hours before the next dose). We will really know when we double the dose to the usual dose today - hopefully there will be a more dramatic change which will prove, once and for all, that this is his diagnosis. (This drug doesn't really treat any other disorder). Fingers crossed! I'm hoping we can get his double vision under control at the higher dose, and make some inroads into his fatigue.

Although this isn't really a disease I would wish on anyone, getting the diagnosis confirmed opens the way to many other treatments including some that may be needed for emergency life-saving treatment in a crisis.

Re: I Will Survive! [Re: kml] #2903078
09/03/20 08:27 PM
09/03/20 08:27 PM
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Positive vibes for your young patient. wink


Me 50, H52
Divorce from XH final 12/17/2014
Marriage #2 12/31/2019
5 adult (step)daughters (3 from XH's first marriage, 2 from current H's previous relationships)
4 grandkids (plus 2 on the way)
Re: I Will Survive! [Re: kml] #2903144
09/04/20 10:52 PM
09/04/20 10:52 PM
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Well CMM had his appointment with the oncologist today and he postponed chemo for another month or so. CMM will get a PET scan and CT after a month and then a decision will be made at the next visit whether any chemo is indicated.

It makes me and CMM a bit nervous, as the last time he had this long a break from chemo he ended up with multiple new metastases. On the other hand, I see where the oncologist is coming from - "hey, this guy has stage 4 cancer, chemo is only going to prolong his life, why not enjoy feeling good while he can?" We will try to enjoy the coming month (CMM is thrilled that his mustache is filling back in since he's been off the chemo lol) and just deal with the PET scan results when we get them.

Re: I Will Survive! [Re: kml] #2903190
09/06/20 12:56 AM
09/06/20 12:56 AM
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Follow up on my young patient - heís on a low-therapeutic dose of the specific medication for the disorder I believe he has. Heís responding just as he should, with significant improvements in his symptoms, which follow the expected timing of duration of action of the drug. This is diagnostic since this medication doesnít work for anything else.

Heís made an appointment to see the specialist near me that was so helpful and validating on the phone, even though heíll have to pay out of pocket as she is not part of his HMO. Meanwhile I am carefully adjusting his dose.

Iím still completely baffled as to how THREE neurologists (and a neurology resident) could have missed this diagnosis. It has followed the typical path, I could provoke the symptoms with the typical bedside test (which none of the neurologists bothered to perform) and heís responding to the medication!

Iím so glad he happened to know my son so that I could help him. And so glad the local specialist took my call.

Re: I Will Survive! [Re: kml] #2903432
09/09/20 08:23 PM
09/09/20 08:23 PM
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So as not to jump on any one person, I'd just like to reiterate my stance on dating and kids. Your kids should not be involved in your dating life. They really shouldn't meet your dates until you've been dating for at least 6 months. No matter how great the person seems, you cannot possibly know enough about a person to know where this is going until you've spend some real time with them. And kids DO get attached, no matter how independent you think they are. They don't need to go through the pain of loss unnecessarily when they've already lost so much in a divorce. Dating breakups can and do have an effect on kids, whether it's just giving them the impression that relationships are inherently impermanent or subjecting them to the pain of loss and abandonment feelings.

In the rush of infatuation it's so easy to think "this is the one!" but any adult relationship comes with baggage and potential pitfalls. Ex spouses or girlfriends come back into the picture , or people turn out to be more relationship avoidant than they seemed in the beginning, or they turn out to be hiding gigantic debts or addiction or gambling problems, or they end up like my crazy ex-boyfriend to be carrying on a relationship with an OW the whole time and hiding other things. NO ONE, no matter how savvy you think you are, can be completely sure in the first phase of a relationship and there's no reason for kids to be included in this part of your fact-finding expedition.

Some kids may be more sensitive to these things than others but they all will experience some effect. Heck, my kids were grown when I divorced and started dating nd didn't introduce them to anyone for a couple of years but they are still affected to some degree by my dating.

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