It Took Seven Doctors to Diagnose Lewy Body Dementia | Perspectives | Being Patient Alzheimer's

Being Patient spoke with Don Kent about his journey with Lewy Body dementia, from the first signs to his struggle to find a diagnosis, and his life with the disease.
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[@valerierohrer5744]

Absolutely correct-it’s so hard to get a diagnosis-my husband & I went everywhere to get testing because it’s a process of elimination. His symptoms were just like this man-& no one believed me about what was happening-even my husband.

[@ommandababineaux1888]

God bless those who are experiencing this illness. Help their families cope.

[@bonniebrown1112]

my ex husband has this (he is remarried ) he had all these symptoms , jumped straight up in the middle of the night out of bed scared and asking me if i saw those men after him , he would load the shot gun and put it under his chin , said he was going to kill me and the kids , my family and my Pastor did not believe me when i tried to get help ,this is the sad part , thank God he finally left , but that did not end the trouble he keep giving me, now he is dying , so sad, i will never get married again out of fear of the same thing again

[@HeyLOOK-aSQUIRREL]

My mother consistently passed mini mentals 30/30. I screamed at the assisted living facility: "Ask her to send an email. She can't. Ask her to check her voice mail. She can't. Ask her to make an appointment with her doctor. Ask her to pay a bill, address an envelope, withdraw money from an atm, arrange transportation, etc." Her personality did change-- I thought it was severe depression or apathy. Doc diagnosed her with anhedonia. There were hallucinations, delusions, for years prior. She was and is terrified of falling, and started falling years ago.nShe also has apraxia. Pervasive personality disorder (narcissism) her entire life made it difficult for me to move on any treatment-- mainly because she wouldn't let me be involved. Neuropsych test results point to Vascular Dementia with Lewy Body. She was diagnosed during COVID-19 in July 2020. It's all a nightmare.

[@leoross5777]

fallling... my dad was a judo black belt and an ex paratrooper, if ANYONE knew how to 'fall' it was him. alas i used to make a midnight tour of the house and would find him in the room passed out bleeding from the head or stuck. unable to get to his feet. like a broken video game character. then we had to velcro him into the wheelchair. he would macguyver his way out but immed fall down.and land on his head. it was a horror show. evidently PSP turns you into an aggravating, pooping,peeing unable to feed yourself,NINJA. and thats not the worse part.

[@kiloton1920]

They are very good at copying others in order to imitate them to make themselves seem normal

[@HeyLOOK-aSQUIRREL]

@@leoross5777 Nightmare. I get it. The doctor calls my mother a Slow. Train. Wreck.

[@HeyLOOK-aSQUIRREL]

@@kiloton1920 Yes. Exactly. Fixating, too. My mother fixates and convinces (deludes) herself and others of untruths.

[@kiloton1920]

@@HeyLOOK-aSQUIRREL I’m sorry it is absolutely horrible. I believe my neighbor is suffering from this disease and her family is somewhat in denial but I know it will only get worse in the next few years. It has already gotten to the point I refuse to talk to her or acknowledge her and we used to be friends after she harassed me over fixing up my garden for a year straight and would wait outside all day for me to come out do my house to complain about something or other. She’s just too negative and awful.

[@inahorn5998]

Thank you Don for being so open and honest and sharing your LBD story with us 🙏 I learned a lot 👍

[@G.G.8GG]

To get these experiences from actual patients is so helpful. A family member has this diagnosis and it's so helpful to know what might be related and what is not.

[@sarahthompson529]

Easy to see how he tricked the doctors - he seems sharp as a tack. I’de let Mr. Kent take my legal case (if I had one)! Thank you for an honest transparent interview. Stay positive & yourself grace.

[@annchurchill2638]

I hope you didn't mean that he Intentionally tricked the doctors. It sounds that way. Lawyers are articulate and have phenomenal memories. Doesn't he sound fine!

[@valeriehunter3795]

Wow. Great interview! I shared with my siblings. Our mother has LBD and has all this and more. She is 77 and has had symptoms since at least 2015 and was diagnosed 2 years ago. When I realized she was having cognitive issues I volunteered for ALZ to prepare myself, that is where I learned about LBD. At this point she cannot form a sentence, sleep is a chronic obstatical, she has gained weight from midnight snacking, tremors, hallucinations, incontinence, and cannot follow simple commands on bad days. She had her first full blown body tremor more than a year ago. We and the ambulance crew thought she was having a seizure. Now we just talk her through tremors. The hardest part was when she knew she was "not right in the head" and would cry. She is well beyond that so in many ways it is easier to care for her. Don's family will always have this interview as a gift to see the real him.

[@leoross5777]

worry not. she will soon forget how to swallow, so the weight gain wont be an issue. but the bad thing is thats when you die. a week or two. morphine drip. feeding tube etc. its pure horror. steel yourself.

[@mauramcferran2612]

Wow This Man is Amazing 👏 ♥️

[@ScienceNsoul3]

This is really insightful. As a new nurse I will definitely be keeping an eye out for the more sneaky symptoms of LBD that are so commonly missed.

[@havanadaurcy1321]

My great grandmother was ignored until she saw 5 doctors. You would think at 90-91 she'd get help. Age is a factor

[@Sedgies]

God bless you for your career choice. I know you are an excellent nurse because of your statement that you will be watching for this disease. I lost my beloved husband a year and a half ago. It took years before I had a diagnosis for him. It was one neurologist that took me seriously when I described the symptoms. He even said he couldn’t say for sure but he suspected DLB. He said we needed to watch as new symptoms arose to really know that in fact it was DLB. my husband started with a change of personality. He was depressed and having panic attacks. He started hearing and seeing things. He lost his sense of small was actually the first symptom. This started years before. He was getting angry too. It progressed from there. He got Parkinsonism. He started falling backwards like a log after being unsteady and using a walker. He also started periods of sleeping all day and then periods of almost manic. It was such a terrible thing to watch. He ended up getting aspiration pneumonia 3 times and he passed the third time. I is home dearly. It’s a very cruel disease and I am grateful for people like you that care enough to carefully watch for. One thing like this gentleman said is true. He had no memory loss and seemed perfectly normal at doctor appointments.

[@weaverdreams]

Love this guy’s spirit!

[@jodiebird1551]

The lived experience cannot be beaten, lovely man very inspirational share.

[@cindysprayberry1486]

We are in Tyler too. My husband has been diagnosed with dementia, but I think it's become more apparent that he has Lewy Body Dementia - he too runs, fights, talks and yells in his sleep. He grabbed me one time at night and asked if I saw it too - someone was chasing him. As he woke up, he realized it wasn't real. My husband is only 57, so we are struggling to get disability payments, since he lost his job due to getting lost in the building and not being able to figure out how to do things anymore. The neurologists really don't seem to feel it's really important to get an exact diagnosis. He has been tested at the MARC two years in a row, so we have an idea of what is going on - the visual -perceptual is one of his low areas. He no longer drives, because he doesn't seem to have depth perception anymore. He also often cannot see things sitting right in front of him, even brightly colored things. My husband also cannot focus to read anymore really - and he was always such a reader. It's frustrating to him rather than enjoyable. He looks at the internet - short news stories - that kind of thing.

[@leoross5777]

good luck with that. this is a plan. 'agenda 21' and the SSA takes YEARS . some of them bastards need to be horsewhipped

[@barbaralies]

Excellent interview with targeted questions. Thank you.

[@janicewilliams100]

Thank you so much Don. This has been very helpful.

[@bridgetttubbs9959]

The active dream part sounds scary. But then to wake up and not remember just as scary. Also sounds so so hard to diagnose. Like you could go for years and not be diagnosed. Then you are speaking to us now and you sound and look like nothing wrong with you at all. Amazing. God bless and thank you for educating the public.

[@shelleysoe7613]

My aunt at 79 LBD just moved July to a dementia home, she acts out her dreams plus other signs, my mother last year diagnosed with LBD, had a seizure in my arms the day I went to move her, my cousin, on mother's side, just died at 62 of rapid onset dementia, our grandmother died of dementia and other issues. Scared shitless in Iowa.

[@shelleysoe7613]

Top thing, all of us born in Abilene, TX

[@Grands-1234]

Thank You Don.. this has been so i formative!! Very helpful

[@toffeelover2558]

My husband is suffering with dementia/Alzheimer’s.....he has had the lengthy tests given by Neuro psychologist as well as being treated by our neurologist.....my question is concerning you having to wait so long for diagnosis.......if your wive was with you at your visits, did she not tell the doctor about all of your changes.....sleep disturbances, hallucinations, taste, personality, etc....would your diagnosis be diagnosed earlier? Just a question.......I you are so well spoken, I am impressed......my husband can barely put sentences together.......you amaze me when I compare you with my husband....he has started to display tremors I notice while eating and when we hold hands I feel his tremor...I called the doctor, as I am wondering if he has levy.....all I know is my heart is broken, daily......he also has Sundowning as well which is horrific, both of us are exhausted......I totally notice personally change about 4 o’clock...it’s amazing...there is a switch that goes on.......he becomes moody, agitated and wanders the house. He has medication to help him sleep, non narcotic, but they seem to take many hours to help him, in the meantime he can’t stop wandering, going through papers, drawers, misplacing things in the house...on and on, and I am terrified to sleep, even with alarm....it’s terrifying.......you are amazing...

[@barbaranance3838]

Thank you for sharing. I'm seeing a neurologist been tested and everything you said you are going through sounds like me only difference is I shake.some days I can't even hold a glass or turn a page walking is another issue.Things have gotten worse this last year. I feel so alone.

[@chanisnow7359]

My mother had originally been diagnosed with Parkinson's disease with minimal shaking..but down the line...after 5 different neurologists she was diagnosed with Lewy Body. So you can have the shaking and the cognitive issues.

[@leoross5777]

@@chanisnow7359 you only have 5-6 months , get to know god. its your only comfort. soon you wont have that choice, or chance

[@barbaraeddy5725]

@@leoross5777 whatttyt

[@leoross5777]

@@barbaraeddy5725 dont worry not you... where youre going it has stoker heat, push button control etc. youll be fine dummy

[@leoross5777]

@@chanisnow7359 PSP or lewey body syndrome is almost ALWAYS 'misdiagnosed' by these 'medical professionals' as alzheimers , minor stroke or parkinsons .wasting what little time you have left on this planet. im not too impressed with these dickuses

[@cherrylleallan2825]

My ex husband has Lewy Dementia Parkinson's, sounded so similar to your symptoms when he first got sick, but his getting worse by the day, he could never keep up a conversation as you had, he was a scholar, musician, he could just about do anything, my daughter is beside herself with grief, we've kept close as we had a gorgeous girl together, I feel at a loss as there is no cure to bring him back from this terrible disease, his to the point his in a daze, but every now and again he can talk, but you can tell him something and within a minute he forgets. It seems to be working fast on him, he just turned 73 and approx 2 years just could see his moods become different.

[@leoross5777]

dear, he has PSP.

[@cherrylleallan2825]

@@leoross5777 his on his way to leaving us, not much time, my daughter is in hysterics and I'm not far behind 😢😢

[@leoross5777]

@@cherrylleallan2825 its a sad think to say, but the silver lining is, his suffering will be over. its not like when others die, of old age or something. its really for the best. for the family and for the afflicted. this disease is a cowardly bastard. i hated it more than anything ive ever hated. ever. still do.

[@cherrylleallan2825]

@@leoross5777 Thank you for your kind thoughts x

[@jennifersherman3860]

Thank you for this.

[@suemcwilliams8470]

Thank you for sharing! It was very helpful.

[@SpoonMe]

Wow! I hear you! Thank you so much. Thank you.

[@heathergustafson4237]

The brain is the commander of our bodies there’s no doubt about it!

[@leoross5777]

now that we have a firm grasp of the obvious we can continue..

[@denisecrawford5289]

Thank you. Informative.

[@BeccaE]

Such a great interview both people love the flow of the questions and answers. This is just so crazy how LBD presents itself such as the hallucinations thanks again for this video

[@lindastevenson6642]

thk you so kind

[@catherinemazzie3981]

Thank you for this video. Very detailed.

[@gweno9901]

Very helpful. Thank you so much! Several points ring a bell with me.

[@herbladie]

What great questions... thank you so much for this vital information 🙂

[@catherinemazzie3981]

Sorry for all the posts, but thank you for sharing this with us. You explained it perfectly and in depth

[@janedodson7583]

Very interesting. Sounds like my husband he was diagnosed with sleep apnea, has pacemaker, he was diagnosed with CIDP and he had diabetes hypertension,hiper lipids,depression .He as fallen several times and just this year fell and broke his hip. He hasn’t driven for over a year.Before he quit he was having trouble with depth perception. We are in central Illinois and have seen five neurologists. Says it’s depression

[@puckh2510]

Hopefully by this time ( your post was a year ago$ you have gotten better answers than depression. My husband has had a VERY similar story of this disease as Don Kent. Fortunately, we are living between north central Illinois And Rochester MN. Illinois said he e having normal aging and relax. Mayo internist saw Jim for the first time and right away said. " likely Lewy" and we were having tests done within .6-10 days and seeing the neurologist within a few weeks, he confirmed the internists thoughts, started Aricept and Melatonin. Changes were noticeable fairly soon after. Not a cure by any means,but giving a kind of status quo so we can gets ducks in a row for what is coming. Try seeing someone at Mayo!

[@squeekie8974]

Excellent # 1 description many of his systems are the same as mine. But this is all new so don’t want to hurry; but I am looking into his 4 hour long discussions; again thank you for being honest !!

[@MrGwrider]

Bad decisions is the worst. He just cut the side of his finger and nail off. I asked wasn’t he supposed to use a piece of wood to push a board thru on a table saw? He said, “I know to use the tool to push thru the board but I just didn’t do it. In addition, he tried to fix a weedeater which instead of doing it on concrete safely he started on a broken down car hood and used flammable liquid to clean spark plugs or parts and somehow caught the weedeater and the car hood on fire. These arejust some of the more dangerous of his lack of ability to make good decisions. I hope this helps someone with symptoms. Please see another comment for other symptoms.

[@TheJeanette53]

I’m glad I came across this … great questions, wonderfully presented and I love the way you speak. I’m with someone for the last 4 years. We know he’s got problems but not sure what the diagnosis will be. So far just monitoring. We’re up to the third neurologist. Going for a PET scan soon.

[@ritaspan5285]

My neurologist keeps asking about delusions and I say no but after listening to this I believe my husband does show delusional behavior. This was very informative.

[@vickierickson3402]

Interestingly, covid lockdowns has been benefiting to my husband. The quiet order of ach day seems to hav reduced the confusion significantly!

[@audreytempleton4415]

Thank you for this information .this helps me so much .

[@vickiecurtis6291]

Thanks for such an educational video. I seem to have most of what Mr. Kent spoke about. I go to my evaluation Next month. Thanks for this video. Vickie

[@user-ex1ps6iq7l]

Prayers

[@judyposner6199]

fabulous interview. Both of them!

[@catherinemazzie3981]

I couldn’t drive,because of the depth perception.

[@jillbrant4549]

Mom just died. Thought ADHD, sleep problem, vascular dementia. Voices in the walls. Lots of mouthwash. Dizziness falls. 75 years-old. Neurologist had no answers.

[@weezie4646]

What about falls

[@catherinemazzie3981]

You know something happened when you wake up with an adrenaline rush. It’s remembered on a cellular level. I have been to many drs, but not one will treat me,because I lost my temper after they called it a personality disorder. Had neurological symptoms since childhood that were made worse after given Paxil for menopause . They missed a TIA

[@reason5591]

Im watching this because im concerned about myself. Im just about to turn 61 and i suffer badly with flailing arms and leg kicking and even my head jerks and my torso too. So my restless leg syndrome affects me much more than legs. Im beginning to not know things that i should. I have urine incontinence with no awareness before it happens both day and during sleep. I have hearing and visual hallucinations. I have a very high IQ, and yet im having so many cognitive function issues. This video is greatly valuable. Thank you.

[@robertacozine428]

Try taking tumeric curcuman for the restless leg. It works very well for me. I pretty much have all your stmptoms but my neurologist said it's not lewy. He shut me down. I've ben talking to him about my shaking for 2 years. He makes me draw a spiral when I'm not shaking and tells me I'm fine.

[@reason5591]

@@robertacozine428 i tried that sir. Dod nothing for me. I mentioned to my cardiologist that i tried it and he said since i have heart failure he wants me to never take it again. It affects heart rythm so for those people with heart issues using it is like playing russian roulette. Thanks fot the til though.

[@reason5591]

@@robertacozine428 sorry you had to deal with a lazy doctor. If a specialist does that to me I fire them and look elsewhere. Too many docs want the income yet arent doing their jobs

[@kiloton1920]

@@reason5591 you need to start eating cannabis three times a day

[@kiloton1920]

@@reason5591 read the chapter on Alzheimer’s in the book the emperor wears no clothes by jack herrer

[@nukejets]

I have all the symptoms listed on the LBDA Symptoms Checklist yet I can't get a diagnosis. I've seen 2 neurologists, a neuropsychologist and a geriatric physician. Next up... another neurologist. I guess I'll have to find 4 more to get a proper diagnosis.

[@lindastevenson6642]

love to know more going for test on wednesday

[@ninamorway5536]

My husband had LBD, started with MCI. First thing was loss of sense of smell.

[@Grands-1234]

I think my husband has LBD.. his brother had it.. my husband has hand tremor, cognitive fluctuations, REM sleep disorder, has lost his confidence in driving, had one illusion, lost his sense of smell.. He refuses to see a neurologist.. He has been keeping lists for all daily activities, recently he ask who ( when looking at family pics) " Who is that"? about the maid of honor.. Sometimes I cant have a convo with him that makes sense.. about the air conditioner.. he seems " foggy" in areas he was previously very sharp.. like fixing things.. what I can do or say to get him to a neurologist?

[@carmenperez4684]

Just like my Dad!

[@susanwillis4825]

My husband has just been diagnosed with Lewy Body, and everything he is talking about has happened to him sad

[@MrGwrider]

I wonder if you can have several diagnosis of dementias. My husband complains of losing smell and taste, his personality has changed drastically to never want conversation.... yes or no is sufficient, his memory is getting worse (short-term) that I know, and he has the sleep disorder of violent behavior in his sleep and throw himself out of bed karate chopping someone, or kicking, or fixing machinery etc....his sleep disorder was tested and out of 15 factors he was bad at 13. His machine could not be set high enough because there were not any higher settings to go to if it was. In addition, he goes to the bathroom a lot so he gets up at night and won’t put his mask back on. This can be a life ending thing if you quit breathing. He does have Parkinson’s. But I am thinking if there can be one diagnosis then why cant you have several dementia’s? I am sure I haven’t mentioned a lot more issues. Oh, being dizzy or losing your balance is an issue. There are are others.

[@bridgetsmith1782]

Yes you can, it's called mixed dementia. My mother in law was diagnosed with Vascular dementia a year after her tia. Since November 2020 she's begun to show all the symptoms of lewy body dementia now. Especially the hallucinations, delusions, paranoia and recently the legs are feeling numb or heavy and she's having trouble walking.

[@weezie4646]

What about Parkinson’s symptoms and often falling out of chair or bed

[@heathergustafson4237]

Well the bottom line here is what clinic diagnosed his Lewy Body Demenia? That will help many many people

[@RMBlake007]

He said Mayo Clinic, but not which one...

[@strongoak0]

My Father had those sleep issues and would swing his arms and jump out of bed and gave himself a black eye.

[@catherinemazzie3981]

I was told I was depressed . I wasn’t. Not one dr asked a question except to tell me I was depressed and anxious. The meds caused irreversible damage and depression. Years later I was told my vision loss was psychiatric. This is genetic in my family. I had to tell me neurologist and to give her father Benadryl and morphine and three flipped out on them it. When they called me I realized it had to be connected because I was diagnosed in the death of my father but they said it was vascular but I thought it was something more. I did research a few years in advance,Because no one saw the changes in my father that I did. I actually had to explain to doctors what it actually is. I Educated myself within an hour and I find it sad that I knew more than the doctors day after an hour of research. It’s frightening

[@valerierohrer5744]

No one saw the changes in my husband but me-his friends doubted everything I said to them until he started falling everywhere-then they believed me that something was wrong

[@sidneyvicious8039]

also look at inability to sleep...tinnitus...changes in body temperature and heart rate

[@catherinemazzie3981]

The depression is caused by the lack of dopamine, and made worse by living with this. I find exercise helps immensely, and foods tha work in the dopamine receptors are helpful as well

[@ninaathome7804]

How is Don Kent in 2023?

[@michele21auntiem]

If u search his name here videos come up of him being on the Teepa Snow Channel.

[@ninaathome7804]

Thank you. God bless❤

[@nancyaltenbach7328]

My father passed away in 2016, I believe he had lewy body, Doctors out there should be more educated out there.One his death certificate it say Alzheimer's.

[@leoross5777]

its almost ALWAYS misdiagnosed as 'alzheimers' these docs should be working on cats and dogs. know-nothing assholes. but its not gonna help if it WAS called out for what it is, theres NO cure. its always fatal. the shame is the waste of time, energy and money doing the alzheimer thing because these idiots dont know how to diagnose

[@cherrylleallan2825]

@@leoross5777 we're falling apart, any day soon, starts first forgetfulness then hallucinations, and falls, ambulances arriving all the time and now the ending ... They send rockets to the moon and can't do anything for this horrendous disease. To see someone dying is the cruelest way of departing, dying before your own eyes, try to stay strong but .....

[@leoross5777]

@@cherrylleallan2825 good news. med beds are finally being revealed to the general public.expect something by the end of the year. google'med-beds' i believe that guy who makes teslas is doing it. i forget his name

[@cherrylleallan2825]

@@leoross5777 Unfortunately too late, thank you Leo x

[@leoross5777]

@@cherrylleallan2825 they dont even know how its contracted. my guess is sugar free soda

[@NannieD]

Requip or the generic Ropinirole, used for restless legs syndrome can actually cause visual hallucinations.

[@leoross5777]

my dad was misdiagnosed for years until someone realized he had PSP it mimics alzhiemers or a stroke

[@patjohnsondixon880]

What is PSP?

[@leoross5777]

@@patjohnsondixon880 para supranuclear palsy. google is your friend

[@1houndgal]

@@leoross5777 Your arrogant attitude do not help. Not everyone knows that acronym. Why be rude? Just answer the question she asked.

[@maryreynolds5310]

Ya

[@catherinemazzie3981]

Be careful with the antidepressants. I tried multiple ones and each one made me more depressed. The depression didn’t hit right away but it’s a Mattick like behavior did as well as agitation and the end ability to stop My legk from shaken.I was on PAXIL.

[@DONALD1951]

I have similar dreams every night...but I remember them.

[@catherinemazzie3981]

I might remember them for second or two but they’re very vague, but the dreams I do remember are usually the ones that are caused from my subconscious mind. I wake up every morning with extremely high blood pressure and very shaky.

[@jillbrant4549]

Shaking, cramping

[@nooralshehabi5487]

Can I get dementia with lewy body ? I am 17 and I'm so forgetful .

[@kiloton1920]

Your too young but it sounds like you are suffering from panic and anxiety disorder.

[@nooralshehabi5487]

@@kiloton1920 actually I have anxiety disorder, but I don't think that it's the cause of my forgetfullness

[@lynneclarke2299]

Dime Tina Dimentia

[@darlenebrace6195]

Is this considered a genetic issue? I believe that both my dad and brother had this when the passed away.

[@Cloud_Strife1997]

you’re more likely to get it if it runs in the family, but it is also more common in men than in women.

[@jillbrant4549]

I think my boyfriend has Loui body dementia. Falls, taste, loss weight not eating. IQ test. Sent to neurologist and check heart. Seeing wolf's chasing. Fight dreams . Distance new glasses.

[@jillbrant4549]

50years old alcoholic and smoker.

[@jillbrant4549]

Yes bathroom problems.

[@jillbrant4549]

All scans normal

[@leoross5777]

oh btw i think there is a definite connection between diet soda and lewy body dementia

[@user-ex1ps6iq7l]

My Dad had LBD, but wouldnt touch anything diet! He loved his sugar. But each case is different.

[@leoross5777]

@@user-ex1ps6iq7l it might actually be something IN sodas in general. those bastards dont care that they are poisoning us. there should be a bounty on some 'food' product executives.we can even bid on thier body parts..im still maintaining the 'diet' connection

[@lorrainekubancik4541]

LBD

[@fauxfaye50]

Did you fall alit and maybe black out

[@monte68x]

I stopped at the point where they were telling us that "loss of sense of taste" was a hallucination. Loss of taste is called ageusia. Hallucination is a false sensory perception. I'd prefer accurate information.