Lewy Body Dementia

[Sac Arrow]

I've never heard of it before. A very good friend of mine was just diagnosed with it. A cursory Internet search suggests that it's some really bad news. Anyone here have any personal experience with it? As in friends, family members, etc... having this condition?

I guess it's like Alzheimer's but worse as in it hits you harder and kills you quicker. Information I read suggests that affected individuals typically live from five to eight years after diagnosis but some people have lived up to twenty, but incapacitation sets in more quickly.

I'm not exactly sure how to react or respond. I'm not good at this kind of thing. I normally get accused of heartlessness and insensitivity when I address the subject of mortality. And in the past from her specifically regarding the passing of family members.

 

[painless]

We have a very close friend who has been suffering from Parkinson’s for several years. He has recently been diagnosed with Levy Body Dementia, an often seen accompanying symptom. So not only is his body failing him, his mind is as well.

He’s 68.


Life’s often not fair......

 

[Matthew]

Dang. That sucks. I once said something about someone that came down with dementia. The guy I was talking to had some very hard life experiences to draw on and said, “Don’t feel bad for him. For him every day is a new day.” It’s a cold world out there.

About all you can do is help where you can, and be thankful for the time together that you had.

 

[MauleSkinner]

My uncle had Lewy Body…Initial symptoms that got him to the doctor were things like he couldn’t remember how to swallow (drinking with a straw helps), couldn’t figure out how to swing his arms when he walked. I don’t remember a lot of the details, as I wasn’t around the area much anymore, but there are apparently certain markers that show up earlier in life that indicate the possibility, and my cousin displays some of those.

 

[Walboy]

I'm not exactly sure how to react or respond. I'm not good at this kind of thing. I normally get accused of heartlessness and insensitivity when I address the subject of someone's serious illness. I just want you to know I'm thinking about you.

If he's a very good friend, then just say what you said above plus some of my editing, he'll know it's genuine. The most important thing is that you acknowledge his predicament. Avoid platitudes or anything else that is out of character for you. Just get it out there, and then be available to be a friend. Yeah, it might seem awkward, but you move forward.

 

[SixPapaCharlie]

Robin Williams had it. They made a documentary where his wife spoke a lot about what he was going through. It sounds terrible. We had a friend who recently passed away from it it was brutal.

Sorry about your friend.

 

[Sac Arrow]

If he's a very good friend, then just say what you said above plus some of my editing, he'll know it's genuine. The most important thing is that you acknowledge his predicament. Avoid platitudes or anything else that is out of character for you. Just get it out there, and then be available to be a friend. Yeah, it might seem awkward, but you move for

Here's the thing. She (yes, it's a woman, older than me but we don't need to get in to that) either knows or will quickly figure out that she has been given a death sentence. I understand what you are trying to say, to downplay the death aspect, but it's there. It's just personally hard for me to pretend it is not an issue. And when I do pretend it is not an issue, I get called out.

 

[Sac Arrow]

Robin Williams had it. They made a documentary where his wife spoke a lot about what he was going through. It sounds terrible. We had a friend who recently passed away from it it was brutal.

Sorry about your friend.

That hits home a little bit. I did not know that. I didn't know him personally but I used to bicycle past his Napa house regularly, and would even see him time to time driving his open top Porsche on that road.

 

[Racerx]

Stan Mikita had Lewy Body. My neighbor 2 doors away has it. The final straw before her and her family decided she needed to be in an assisted living facility was when she called the cops saying there was blood on the walls everywhere. Apparently psychosis is common. She is my great aunts best friend, worked in the office at my elementary school, and let me fish in her pond when I was younger. It's sickening to think about. Her father had Parkinson's and passed away a few years ago. The neighbor in between her and I currently has Parkinson's. Across the street is an old garbage dump that is/was on the Superfund list. We're all on wells. All regularly tested, but it doesn't make you feel warm and fuzzy.

Like you Im also terrible at this sort of thing and the running joke in my friend group is I'm autistic because of my perceived lack of empathy. Not autistic. Just an idiot who makes horrible jokes to try to deflect

 

[TCABM]

… She …either knows or will quickly figure out that she has been given a death sentence...

We’re all given one at conception; are you presuming her reaction to the disease?

When I got the melanoma diagnosis, I said eff cancer and I’m going to enjoy every day going forward. I did and still do.

Fast forward a decade. One of my groomsmen, a college roommate, and friend who flew to Europe to visit me just after I was diagnosed was rewarded with pancreatic cancer. Treated and went into remission. Less than 18 months later, it roared back in his liver…he passed within six months.

We talked weekly up until he couldn’t any more. He knew what was coming, I knew what was coming. His focus was doing what he could to ensure his parents, who he’s the caregiver for, would be taken care of after he couldn’t do that anymore. Pretty dang selfless attitude.

He rarely mentioned what the cancer was doing to his body; we laughed and shared memories some days, discussed legacy strategies for his estate other days. He was ecstatic the day we bought into the plane partnership and never regretted not getting together more often.

I’d say just be you. If she wants to broach the subject of mortality, let her do it her way. If not, maybe sacrifice a chicken or goat or whatever Santeria calls for and carry on in the way she needs you to. Just don’t tell her about the sacrifice. Unless she asks.

 

[Bell206]

Anyone here have any personal experience with it?

Its closer to Parkinson's than Alzheimer's but same group of diseases. My dad and uncle have PD and the discussion of LBD is all part of the discussion. LBD tends to manifest itself sooner than PD dementia. Lot of info out there from various organizations. Here's one:
https://www.michaeljfox.org/news/ask-md-what-lewy-body-dementia

 

[SixPapaCharlie]

That hits home a little bit. I did not know that. I didn't know him personally but I used to bicycle past his Napa house regularly, and would even see him time to time driving his open top Porsche on that road.

Its heartbreaking to watch. Especially since he didn't know what his diagnosis was but knew something was terribly amiss. The autopsy revealed diffuse Lewy Body. He knew something was wrong and chose his own out but the hindsight in these interviews of those around him is really interesting and very sad.

 

[dtuuri]

I've been kept pretty busy for the past year helping an old girlfriend who was diagnosed last Thanksgiving with Parkinson's. After she had a DatScan, Lewy Body Dementia was the updated diagnosis. I think I could write a book after all the hours and hours of research I've done trying to understand her symptoms and medication dosing. I'm her medical POA now. She had fallen twice in one week and fractured her pelvis both times. While in the hospital the consulting neurologist ticked off about six symptoms she had and diagnosed her with Parkinson's: Can't smell, "freezes" when walking at doorways, etc. He put her on levodopa and WHAM! She could talk and walk instantly again. Until it wears off, that is. Then she would have excruciating anxiety and beg to be taken to the ER or given Xanax or something like it. Seems like most assisted living staff and even her doctors don't realize how to treat the anxiety. They bomb her with clonazepam and Seroquel which dopes her up and causes her to fall more and break more. Since the pelvis last year she's broken her wrist, had stitches in her forehead and detached a retina and the thing behind it. I spent all summer taking her to eye surgeries and follow-up appointments. The drug that fixes her anxiety is LEVODOPA. Every time. It takes 45 minutes (you can set your watch) for the Sinemet to reach her brain and replenish the missing dopamine. The trouble is, it only lasts for three hours, if that, so we finally got her into the Cleveland Clinic and now she's on Rytary, an extended release version that gives her an extra hour or two between doses. After any change in medication I bring her to my home where I can tweak the dose intervals and work with the prescribing doctor in a way the staff at her assisted living cannot/will not. I'm now weaning her off the many other pills she takes, most of which have a "moderate interaction" with levodopa. According to her PCP's instructions, of course. And, using small doses of Sinemet as a pre-emptive booster for the Rytary an hour before the next scheduled dose of it. This is working really well for her. But it's something I've come up with, not any medical people, by asking her neuro to allow the booster when she "wears off" and then using it before it actually does. Nurses blindly execute a doctor's orders and use PRN medications to treat symptoms caused by too much or too little of the magic medication (levodopa). Someone needs to help your friend who isn't afraid to take a stand and call the doctor for adjustments based on their commonsense observations. The dementia will preclude her cognitive ability to dose herself. My friend can't even work a calendar, for example, even though she can read, play spider solitaire on a computer and carry on a good conversation. Then in the next moment, she'll think she's at her own apartment two hours away and root through all the cupboards looking for her Oreo cookies. I hope this has been helpful for you — writing it has been cathartic for me.

 

[Racerx]

I've been kept pretty busy for the past year helping an old girlfriend who was diagnosed last Thanksgiving with Parkinson's. After she had a DatScan, Lewy Body Dementia was the updated diagnosis. I think I could write a book after all the hours and hours of research I've done trying to understand her symptoms and medication dosing. I'm her medical POA now. She had fallen twice in one week and fractured her pelvis both times. While in the hospital the consulting neurologist ticked off about six symptoms she had and diagnosed her with Parkinson's: Can't smell, "freezes" when walking at doorways, etc. He put her on levodopa and WHAM! She could talk and walk instantly again. Until it wears off, that is. Then she would have excruciating anxiety and beg to be taken to the ER or given Xanax or something like it. Seems like most assisted living staff and even her doctors don't realize how to treat the anxiety. They bomb her with clonazepam and Seroquel which dopes her up and causes her to fall more and break more. Since the pelvis last year she's broken her wrist, had stitches in her forehead and detached a retina and the thing behind it. I spent all summer taking her to eye surgeries and follow-up appointments. The drug that fixes her anxiety is LEVODOPA. Every time. It takes 45 minutes (you can set your watch) for the Sinemet to reach her brain and replenish the missing dopamine. The trouble is, it only lasts for three hours, if that, so we finally got her into the Cleveland Clinic and now she's on Rytary, an extended release version that gives her an extra hour or two between doses. After any change in medication I bring her to my home where I can tweak the dose intervals and work with the prescribing doctor in a way the staff at her assisted living cannot/will not. I'm now weaning her off the many other pills she takes, most of which have a "moderate interaction" with levodopa. According to her PCP's instructions, of course. And, using small doses of Sinemet as a pre-emptive booster for the Rytary an hour before the next scheduled dose of it. This is working really well for her. But it's something I've come up with, not any medical people, by asking her neuro to allow the booster when she "wears off" and then using it before it actually does. Nurses blindly execute a doctor's orders and use PRN medications to treat symptoms caused by too much or too little of the magic medication (levodopa). Someone needs to help your friend who isn't afraid to take a stand and call the doctor for adjustments based on their commonsense observations. The dementia will preclude her cognitive ability to dose herself. My friend can't even work a calendar, for example, even though she can read, play spider solitaire on a computer and carry on a good conversation. Then in the next moment, she'll think she's at her own apartment two hours away and root through all the cupboards looking for her Oreo cookies. I hope this has been helpful for you — writing it has been cathartic for me.

The world needs more people like you.

 

[Sac Arrow]

I've been kept pretty busy for the past year helping an old girlfriend who was diagnosed last Thanksgiving with Parkinson's. After she had a DatScan, Lewy Body Dementia was the updated diagnosis. I think I could write a book after all the hours and hours of research I've done trying to understand her symptoms and medication dosing. I'm her medical POA now. She had fallen twice in one week and fractured her pelvis both times. While in the hospital the consulting neurologist ticked off about six symptoms she had and diagnosed her with Parkinson's: Can't smell, "freezes" when walking at doorways, etc. He put her on levodopa and WHAM! She could talk and walk instantly again. Until it wears off, that is. Then she would have excruciating anxiety and beg to be taken to the ER or given Xanax or something like it. Seems like most assisted living staff and even her doctors don't realize how to treat the anxiety. They bomb her with clonazepam and Seroquel which dopes her up and causes her to fall more and break more. Since the pelvis last year she's broken her wrist, had stitches in her forehead and detached a retina and the thing behind it. I spent all summer taking her to eye surgeries and follow-up appointments. The drug that fixes her anxiety is LEVODOPA. Every time. It takes 45 minutes (you can set your watch) for the Sinemet to reach her brain and replenish the missing dopamine. The trouble is, it only lasts for three hours, if that, so we finally got her into the Cleveland Clinic and now she's on Rytary, an extended release version that gives her an extra hour or two between doses. After any change in medication I bring her to my home where I can tweak the dose intervals and work with the prescribing doctor in a way the staff at her assisted living cannot/will not. I'm now weaning her off the many other pills she takes, most of which have a "moderate interaction" with levodopa. According to her PCP's instructions, of course. And, using small doses of Sinemet as a pre-emptive booster for the Rytary an hour before the next scheduled dose of it. This is working really well for her. But it's something I've come up with, not any medical people, by asking her neuro to allow the booster when she "wears off" and then using it before it actually does. Nurses blindly execute a doctor's orders and use PRN medications to treat symptoms caused by too much or too little of the magic medication (levodopa). Someone needs to help your friend who isn't afraid to take a stand and call the doctor for adjustments based on their commonsense observations. The dementia will preclude her cognitive ability to dose herself. My friend can't even work a calendar, for example, even though she can read, play spider solitaire on a computer and carry on a good conversation. Then in the next moment, she'll think she's at her own apartment two hours away and root through all the cupboards looking for her Oreo cookies. I hope this has been helpful for you — writing it has been cathartic for me.

That's certainly informative.

 

[Brad W]

I'd never heard of this before, but these sorts of things are on my mind. Condolences to Sac Arrow for the bad news.....

Lot's of Alzheimer's on my mom's side of the family. Mom is now 82 with no signs of it, but her mom had it, and I think ALL twelve (12) of my Grandma's brothers and sisters had it
and I know it runs in families so it's I guess always on the back of my mind.

Anyway, I'll just throw this out there, for what it's worth
I've been on a deep dive rat hole of research on metabolic health.... started initially for reasons completely unrelated to Alzheimer's and brain health really, more about health in general. The benefits I'll mention here though, up against my family history, are one of many reasons that I so far have found no reason to ever stop living this newfound lifestyle that I started about a year ago....
One Dr that I have studied quite a bit used a therapeutic ketogenic diet to help her mom have a much better quality of life while battling cancer(Dr Annette Bosworth, aka Dr Boz). The cancer ultimately won of course, but she apparently had great success in slowing it..and in vastly improving her mind and body through the battle. She wrote a book about the story. Dr Boz has focused her research and efforts in large part now apparently towards these sort of brain and brain health issues using ketosis. This is not the keto "fad diet" made popular in weight loss circles....it's much deeper Dr supervised ketosis, that fuels the brain with what it needs.
In my rat hole of research I've heard and read many other Doctors and professors in this field also mention good affects related to brain health, dementia, Parkinson's, etc... so it's not just Dr Boz... and there is good science behind it
Who knows, it might at least help improve the quality of your friend's remaining time... or maybe reduce the risk for others of us

 

[dtuuri]

That's certainly informative.

This video is the best I've seen on the matter:

Dr. Ahlskog of the Mayo Clinic discusses dosing in the last half of the video. He wrote at least two books — one for clinicians and one for patients. His lecture helped me lobby for more Sinemet when her neuro-psychiatrist was reluctant to increase her aggregate daily dose. Now I'm lobbying for eliminating her other pills to find a baseline and treat upward from that as needed. Over the years, various doctors would add something — hospitalists, for example or nurse practitioners — never to be seen again and the results never assessed for effectiveness. I want them gone. She's anorexic, so was ordered mirtazapine for 30 days. Well, eight months later and not a pound gained I pleaded to stop it because she drooled all day long. Assisted living nurses never noticed the "Stop" date. So it goes. One grass fire after another. A week ago I asked my friend if she would agree to a one-day "medication vacation" (except for levodopa and a couple pills known not to interact with it) and within 24 hrs she was noticeably better in all respects. So, out went the vitamins and 1200 mg of calcium/D3, Lipitor and her nightly dose of Seroquel is cut in half and no more clonazepam from me (it's PRN). This morning, she's actually hungry again and walking most of the day with no need for a walker for stability. AND... not falling six times in three hours like a week ago! But I can't take her to assisted living because the doc's orders are Rytary 3x per day and another dose if she wakes up at night. Nurses interpret that as "every eight hours", which won't work because it "wears off" in five or less. I'm hoping the reduction in those other meds will improve the effective endurance of the Rytary, but her doctor needs to change his dosing instruction yet again for the staff. The system is run by cursed lawyers, it seems. Nobody wants to use common sense.

 

[Racerx]

This video is the best I've seen on the matter:

Dr. Ahlskog of the Mayo Clinic discusses dosing in the last half of the video. He wrote at least two books — one for clinicians and one for patients. His lecture helped me lobby for more Sinemet when her neuro-psychiatrist was reluctant to increase her aggregate daily dose. Now I'm lobbying for eliminating her other pills to find a baseline and treat upward from that as needed. Over the years, various doctors would add something — hospitalists, for example or nurse practitioners — never to be seen again and the results never assessed for effectiveness. I want them gone. She's anorexic, so was ordered mirtazapine for 30 days. Well, eight months later and not a pound gained I pleaded to stop it because she drooled all day long. Assisted living nurses never noticed the "Stop" date. So it goes. One grass fire after another. A week ago I asked my friend if she would agree to a one-day "medication vacation" (except for levodopa and a couple pills known not to interact with it) and within 24 hrs she was noticeably better in all respects. So, out went the vitamins and 1200 mg of calcium/D3, Lipitor and her nightly dose of Seroquel is cut in half and no more clonazepam from me (it's PRN). This morning, she's actually hungry again and walking most of the day with no need for a walker for stability. AND... not falling six times in three hours like a week ago! But I can't take her to assisted living because the doc's orders are Rytary 3x per day and another dose if she wakes up at night. Nurses interpret that as "every eight hours", which won't work because it "wears off" in five or less. I'm hoping the reduction in those other meds will improve the effective endurance of the Rytary, but her doctor needs to change his dosing instruction yet again for the staff. The system is run by cursed lawyers, it seems. Nobody wants to use common sense.

I can only hope if something this awful happens to me that I have someone like you in my life. Closest thing I've got now is my sister, and she'll be pulling the plug at diagnosis.

 

[dtuuri]

I can only hope if something this awful happens to me that I have someone like you in my life. Closest thing I've got now is my sister, and she'll be pulling the plug at diagnosis.