Man With Lewy Body Dementia Misdiagnosed for Years | Patient Perspectives | Being Patient
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- เผยแพร่เมื่อ 9 มิ.ย. 2024
- Mike Belleville was told he had Alzheimer's, but later found out he was wrongly diagnosed and living with Lewy body dementia. Could your Alzheimer's diagnosis be another form of dementia?
Related Lewy Body Dementia article on Being Patient:
Lewy Body Dementia Causes, Symptoms and Treatments
www.beingpatient.com/lewy-bod...
Leading Researcher Weighs in on Lewy Body Dementia Versus Alzheimer’s
www.beingpatient.com/differen...
Dementia With Lewy Bodies Has Unique Genetic Profile
www.beingpatient.com/lewy-bod...
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I wonder how this wonderful man is doing today... it would be nice to have an update on him.
He just recently released a video. He sounds just as cognizant and interactive as he does here.
When my husband was diagnosed with Frontotemporal dementia I made the decision to make a good memory every day and to not bury him before he died. I cared for him for three years at home until 15 days before he passed. He spent those last 15 days in the hospice house and I was able to be with him until he made his journey to heaven. I wouldn’t trade one min. That we spent together even though it was a very difficult time. I still miss him terribly after 1 1/2 years!
Good round up on Lewy Body Dementia. My brother died of early onset Lewy Body Dementia at the age of 56 years old. Currently, I have been given the diagnosis of Mild Cognitive Impairment due to diffuse Lewy Bodies. I am fully capable right now due to the drugs prescribed by my Neurologist. Hearing what other patients are going through is very interesting to me. Keep up the good work.
So doctors can give you meds and yet they choose not to do so.
He is so informed and well spoken. It's hard to believe he has dementia.
That’s why it’s hard to diagnose because they are normal so much of the time. No one believed me when my husband started the sleep issues-depression-falling because of balance-all the little things that are happening. He 1st used a cane-then a walker-to wheel chair.
Mike you have been so informative and to me it seems unreal that you are a person with Lewy body dementia.
You have been so great to listen too. Thank you.
Same
I watched my father go through Dementia with Lewy Bodies and didn't know anything to begin with, but what shocked me was how much freedom he lost as to his own decision making, he wasn't often listened too nor having his own opinion taken seriously. He became managed by other people and the pace of change, meet he was losing control of his life, it was sad because he lost driving, he was a talented car mechanic and explored every part of new zealand in many different cars and campers. I would drive him for 2 years and he was still able to navigate everywhere. He lost his ability as a sportsman, even to walk longer than a few 100 meters, and worst lost his home, not being able to stay with mum after 55 years of Marriage. He finally spent only a few months in a Dementia ward, and a week of palative care before his death 2 years ago.
I'm currently watching my father slowly die from this disease, it's so cruel. He can no longer communicate with us now
I totally understand. My daughter is diagnosed with Lewy Body Dementia with her the difficult part was she also has cerebral palsy, epilepsy and heart valve failure. Much ❤to all of you.
Mike is so well spoken.
Thank You,Mike 💖💖💖for sharing Your Story🌠✌👣💖Your 1000%Correct On You Have tons left to offer!! Even if you didn't You should still Be treated With 1000%Love & Compassion 💖💖💖👣✌🌠🙏My Father has had Parkinson's for 8 year's and choose not to take any meds. He's 82 now 83 in July ,He's has dementia last 6 months. But still working at his business, barely but he's still going!! We are VERY Blessed!! Most days 😍👍He just lost all use of his legs 3 days ago. But back walking today😍🙏🙏💖Never Give Up HOPE 💖🙏 I'll be showing My Dad , Hoping he'll open up a little more😉l 🙌🙌🙌🙌
Thank you, your dad sounds like someone we could all emulate !! TY for sharing this with us/me and PLEASE give him my best!!
Newly diagnosed and have done his journey too!!! It’s nice to know I am not CRAZY; people seem to be scared of me …thank you
Thank you so much Mike. This was so helpful and gave me an opportunity to talk to my husband about his feelings. It’s been hard to get him to open up. Appreciate your openness and honesty.
Wonderful interview. Thank You Mike
Thank you Mike so much for your insight. I am encouraged by your perspective and great attitude.
I am currently researching type 2 diabetes, there are approximately about 30 symptoms, which I have addressed with minerals, spices, and cleanses. I engage in a waiting for my next pay check to arrive to try a possible solution for a symptom I have identified. You mentioned sleep deprivation, brain issues, balance issues (I called it dizziness, which I address with phosphorus). I have not thought about the brain or sleep issues. But I too have those issues. I am investigating fenbendazole, a dog dewormer, to see if that will address my symptoms. I know that may sound strange. But fungus, parasites, metals, toxins, etc., 8 suspect invade our bodies and suffocate us. Glad I checked out your story.
I am just starting this journey. Thank you for your honesty and your willingness to share.
Oh no...😔
Love and virtual hugs. 💕❤💕
Prayers
I’m sorry to hear that.
Prayers on your journey! 💙
Prayers and best wishes! Hang in there!
He spoke very eloquently and thoughtfully. My mother displays all the symptoms of LBD but expressing herself is one of the things she finds challenging.
Mike is a gem. He certainly sounds fine and hope he is doing well.
Thank you so much for being so open about your journey. My hubby is gone now but he had been diagnosed with early onset Alzheimer’s and Parkinsonism as well. Yet, that didn’t really fit either. We are convinced he had Levy Body Dementia as well since his journey was absolutely not like Alz. but very much like LBD. It give us peace to have some answers.
same here ... and finally, you are realising it was not the loving person "acting out", but the LBD talking .... would have helped a lot to know that before and been able to do certain things differently.
Thanks so much for your candor. Keep helping people. This is so needed!
I have recently watched videos on studies of cognitive decline. In these videos, the doctors refer to dementia as type 3 diabetes. Studies on lowering your carbohydrate intake actually helped stop mental decline, and with time, slowly fixed the damaged neurons. The quicker you apply this low carb diet, to when you start with first noticed issues, the better outcome.
Exactly Right....that is my conclustion as well!
Learned so much from this video. You are both very easy to listen to. So informative and helpful.
Thank you sir for your insight! I can't begin to tell You how helpful you've been!
Thank you for sharing.. I appreciate you, Mike.
Amazing interview 👏 thanks 😊 🙏
We discovered the presence of Lewy body in me after my having been properly diagnosed with an extremely rare form of adult onset Adrenoleukodystrophy. I suspect many manifestations of dementia are associated with some other disease to the central nervous system. None of us is a textbook, but wow our Lewy body element sounds so similar. Thanks for being a positive example.
Wonderful interview. Thank You
Mike, Thank you so much for this wonderful information. I hope you realize how much your helping others✌️
Very well presented. Thank you. I wish you well Mike, you are a star.
Thank you so much for this information Mike.
I also have just started this Jurnie!!!!!! God help us. I am 64....🙏
Thank you for sharing your story Mike 🙏
Thank you for this post. So glad you are doing so well with this disease. My 75 year old husband was diagnosed with Parkinson’s in 2007. After being on Mirapex with disastrous results for 2 years he was put on Sinimet which helped some but his on off times were unpredictable and he was using a walker by 2009. He struggled this way until 2017 when he could no longer walk without falling. When I could no longer care for him at home he was placed in a nursing home. During all of these years I had noticed a real change in personality but just accepted it. He had been a kind wonderful selfless husband but had become increasingly anxious and suspicious. Plus he was at times delusional and hallucinating with nightmares he was acting out on. Now with the Covid I have been unable to visit with him in person and just on FaceTime. He has become completely paranoid and suspicious of me and everyone around him. When he was diagnosed in 2007 lewybody dementia was not being talked about and so his diagnosis of PD is his diagnosis. Thank you so much for explaining the illness so well. God bless you and your wife and family.
My dad was 74 when he was told he had Parkinson's and he was 84 when he passed in 2010. He may have had this also because the Parkinson's medications made made him worst every time they updated the medication. But he had all the same symptoms that you have. And he was able to function like you for about six years before it got so bad and in the last two years it got really hard on him but it was the last three months that was the hardest on him.
Speaks very well
Mike, you are amazing! You opened my mind to better understand dementia, particularly Lewy Body Dementia.
Mike...thank you so much...I learned a lot from you.
I hope you are still doing good.
Hi! This is great to see the person afflicted with dementia speak on it. I just want to offer some constructive criticism. Allow people a little more time between questions. It's so hard to think a d answer questio sometimes and then it can shut a person down and give you less quality of answers. But this was great otherwise!
This was a great interview. How is Mike doing today?
Mike you are amazing!! I learned so much!!
Mike, God bless you and thank you for sharing so freely with the rest of us! Listening to and watching you here, I'd never guess that you have Lewy Body. May you continue to do very well!
Godspeed!
Thank you so much Mike for all your insights into LBD , it is really very much appreciated . I love the fact that Art has been helping you . I personally think that artistic skills run in families.
I am so sorry for what you are going through. We all have our long hard journey. I lost my daughter in august 2020. I can’t feel anything but sadness and hoping it will change,. I have to believe this. Maybe for you they will find the answers to turn this around. I wish you the very best and may God bless you and your family. Prayers never hurt. I will say a prayer for you.
My dad was misdiagnosed for over ten years with Parkinson’s. I tried and tried to reason other the medics that he had less body but even at his death they had him down as Parkinson’s. He had REM sleep issues for years and years. Probably over twenty years of it. The hallucinations were incredible. But I knew when I found out about the REM sleep. He was always fighting, lashing out in his sleep. I’m still furious with his misdiagnosis. The wrong medications that my mother tried and tried to tell them that these drugs were making him worse. She was pushed away and ignored. Still furious.
Sorry for the typos. I can’t seem to edit. My keyboard loves to mess !
Can you name which meds did you use for your father? My mother too was diagnosed with Parkinson even though she had no tremor. I believe meds is making her more terrible
Oh mike you are amazing. I’m amazed at your strengh
Mike was right when he was talking about needing a diagnosis in order to find the safe range of medications for any given dementia. Getting the diagnosis is very difficult now because there is a wide disconnect within the medical specialties. GPs are not familiar with those within the neuro specialties, counseling is unfamiliar with those within their own communities who could diagnose the dementias of the clients they see, and caregivers are at a loss as to where to go to get a foot in the door and find anyone capable of untangling the many symptoms and possibilities of the many syndromes etc. It does indeed take years to stumble through the dark to reach the one person who is knowledgeable enough to begin to help. I hope within the "bringing awareness" community that doctors are being included in some sort of outreach program within their continuing education/conference circuit to end the illiteracy of this arena of medicine.
Thanks for this interview. My coworker has this and I’m trying to understand how to show more grace and give him the human dignity he deserves. At first I wrote all of his behavior off as him being lazy and having selective memory.
You’re amazing Mike 👍👍👍
How many doctors and/or neurologists did you see before you found one that understood you.
So many neurologists seem to not know what to do or how to help me. I asked about Lewy body this one neurologists said to me that I was not the doctor to
Prescribe.
I cried getting home as old as I am, 75.
I like to be informed to be aware of my
Decisions. Thank you for so openly sharing and helping me and others to be
Educated.
Judith, Sending you hugs and prayers . You did the right thing to inquire with the' ivory tower' physician. The guy must be insecure in his position as a health care provider and is easily intimidated. So sorry he hurt you sweet lady.
Thank you Mike
Regarding committees not listening to patients, regardless if they have dementia or not, if they are able to voice their concerns you can’t dispute their sanity and they still have a level of independence therefore you can’t condemn them to early insanity purely because of their diagnosis.
Thank you
My husband took carbidopa & it took 2 years to get his diagnosis & was a process of elimination of other things that it could have been. Horrible for the caretaker because no one seems to believe something is wrong because they are so able to communicate & all the symptoms my husband had could have been something else.
Kindly write the organisation he has mentioned that can be cntacted.PLEASE
Whoa, wow, OMG and thank you Mr. MIKE!!
I've been involved with my Dada and his journey since 1981 and family always said to watch him cause there was something going on.
2006 he began to have problems with playing the guitar, playing the same chords for different songs, arguing he was right and THEY were wrong, surly, stubborn and challenged.
He's been diagnosed with early onset since 2009, after back to back loss of both parents, developed the tick and tapping foot, then disappeared with a woman who abused, neglected and exploited him.
2018 he had a major heart attack coupled with ministries resulting from 40+ years of alcohol and drug abuse. Very wrong, so very wrong.
2019 this woman left him because she's wanted by the fbi and I finally assumed he was done running. Then I started seeing everything Mike has touched upon above.
Currently working on getting consent to remove him from the VA team and getting him to someone who actually knows how to diagnose this awful disease because he has been misdiagnosed for 20+ years!
Thank you for the false report of limes disease! They did this to him also because they thinks he's got a mental tick, which is there, but it isn't from Lymes it's LBD allll day!!!
Lewy body dementia is a cruel disease. I'm currently watching my father slowly die from this disease
Hey how's he now? Can you share?
Mike you explained LBD so well.
My husband died of LBD.
I do remember physician saying
After I asked about LBD vs Alzeimers.
What difference does it make.
Not a question. But a statement.
God must have sent me to this video. I’m scared, worried fir myself and I’ve been told I had rbd and I definitely don’t ...well, honestly I could go on and on. I wish I could talk to this man! I’m so afraid I have it too.
I’m now wearing my sleep mask, heck can’t think of it now. But these past 3 years I’ve had 12 to 13 surgeries. All for an ileostomy. Anyway, I’m not the same. So much of what this man is saying has my name on it. Omgoodness...I don’t know what to do! I think tomorrow I will make an appt with my sleep dr.
Thank you!
Are you ok?
God Bless you for sharing. I learned about Lewy Body from a dear friend who's husband developed it. My father had CJD, and I also cared for a young woman with CJD and have cared for several people with Alzheimers. I am always praying a medication will be found. I have MS which also affects the brain negatively. We need to find more helpful medications.
Update on Mike please 🙂
Does LBD and headache relate in this dementia.?
Mike...I wish I could talk to you.
My husband died from Lewy Body but was told he had Alzheimer’s. We would not have known he had Lewy Body until our daughter came with Lewy at the age of 53.
She seems to have very little compassion. She asks her questions without emotions, does not respond with empathy or compassion, and interrupts with bad timing and, again, no compassion. That may only be my perception.
What to do if your caregiver becomes a bully?
What is the difference between levy body dementia and regularly dementia/
There is no “regular” dementia. They are all different, and they have names, like Alzheimer’s, Lewy Body Dementia, Vascular Dementia, Huntington’s Dementia, and so on. Back in the day, it was all lumped together and called old age senility, which we now know is wrong. There is even a rare form of dementia that infants are born with. They reach a few development goals, then slowly start to decline and they die. The age of death is usually according to the genetic form of infantile dementia which was diagnosed.
Infuriating number of commercials. My wife has LB and I would like to watch the second half but no way.
I am sorry to learn about your wife's disease and wish both of you the best. My 59yo sister also has it. Sadly, her husband decided, at Christmas, to place her into assisted living. The ads are a disservice to Mike. It seems greedy to insert ads every four minutes for such an important story.
If I may suggest, this couple's channel is quite informative as I've seen about 30 of their videos.
th-cam.com/video/fM4Iiewruzw/w-d-xo.html
Can you be misdiagnosed with bipolar and it’s really leery body?
My husband has been diagnosed with this disease he experiences inability to swallow .The symptoms he tells is what my husband has 😢😢 15:54
Very informative...too bad the interviewer was so poorly prepared....way too many interruptions & ums and ahs
I agree. It is so off putting to listen to that when this is such an important topic for many of us. I don't mean to just sound petty and critical but my nerves are already raw.
A question that I didn't hear is ( is there a genetic component to lewey body?
Watch this interview with one of the world's leading experts on LBD. www.beingpatient.com/difference-between-lewy-body-dementia-and-alzheimers/
What Type of Tests Needed to Be Done to Find Out? Holland
It's funny, I just caught where he worked at Verizon. Molly from Joe Joe channel she took had Lewy Body and worked at Verizon.
I’m only 57
I don’t have Facebook
Hi i dont have facebook eather! I am 64 and have Lewy Body !!! I just found these videos and it us so nice t here someone elce but me talk. Lol i dont know u but i will pray 4 us!!!🙏
My dad is in stage 6. Its a horrible disease
Sending you hugs...my dad is the same.
Hey how's he now 0?
Mom will. Be. 88 27 of. This month.
I. Am. 55 I will. Be. 56 June. 3 1966.
Brain donor #4605 Concussion Legacy Foundation to assist in research of neurodegenerative diseases, finding cures, and insight into causes!
Autopsy. Maybe not a great subject. Seems cold. In any context.
I wish youd stop the stupid translations/repeating of the wordz spoken. It makes things even harder when the written words are so wrong!
Mom had. Dementia because car accident.now. Mom is. In. The. Nursing homes.
Mike. Look like 56.
The dog kibble is distracting me, plus the interviewers interruptions are anoying.
Thank you for your info and awareness ❤@ lorraineamicothemakeupartist
I've heard that Alzheimer's is the most common, FTD (frontotemporal dementia) is the second most common and Lewy Body third.
Nope, Lewy is 2d most common form of dementia, then Vascular Dementia.
Since they now call Alzheimer's (and other dementias) Type III diabetes, have you been put on a ketogenic diet with exogenous ketones? They used to call diabetes incurable but now that's no longer true. Researchers are finding success at abating the progression and even retrieving some function for some.
Diabetes is STILL incurable, both Lewy Body AND A;lzheimer's are characterised by deposits of abnormal proteins in the brain and I have NEVER heard anyone call dememtias of any sort "type III Diabetes, (there's probably fewer than the number of fingers and toes I have that have EVER believed that)...So, FACEBOOK MEDICAL SCHOOL is a thing? Wow, just wow.
Thank you Mike