Lewy Body Dementia - A Conversation with Robert Bowles

[@juliamundt101]

My 61yo husband (bipolar 2) became very sensitive to anti-psychotic meds in 2018 requiring 2 mo hospitalization and catatonia. Slept 20 hours a day when he came home, for five years. 5/2023 another episode with catatonia, but different & better Drs in new state (teaching hospital). Lots of testing. He has a Parkinsonism, tremor, MCI, depression & apathy. He was put on newer meds while inpatient for 4.5 months. 3/2024 back in hospital, unstable, hallucinations, sleep walking, depressed--LBD skin biopsy results pending. I hope we have some answers so we can treat appropriately.

[@janiecooksey5397]

My LO was diagnosed with PD in 2019, but just received his Lewy Body Dementia diagnosis 2 weeks ago. I'm going to hv him listen to this. Thank you and Blessings

[@sallyclay1974]

My sister passed away from Lewy Body dementia. It destroyed her body and mind in 7 years.The first year fell alot started to forget thingdps, and hallucinated. She saw green furry creatures. The meds controlled that. After the end of the first year, she became infirm. She couldn't do anything by herself. She couldnt talk coherantly. The first 4 yrs, were in her house in Ridgefield, CT, with round the click care. The last 3, were at The Assisted living facility, The Residence, in Darien, CT. Her left hand shook from Parkinsons. At the end, she couldn't walk or talk. I salute the whole medical staff, including caregivers and Hospice, for taking such great care of my sister.

[@Simply_Sadie]

What a charming, intelligent, humble and inspiring man

[@mkbonniew]

I just want to say, that Robert is indeed a lovely caring man! I was able to meet him with my husband as we visited our daughter down where Robert lives. My husband was a pharmacist also. When this disease hit, it hit like a brick to our heads. The knowledge & peace that he gave us then, has helped me tremendously. My Thanks & Gratitude to you, I can’t begin to say. I can say, that I pray for you & your wife as you go through your trials. Hugs!

[@gaylatrice1401]

Robert Bowles, you are amazing. Wish I had this information a few years earlier in order to be a better caregiver to a family member who has passed away.

[@unstrung65]

I greatly admire you Mr Bowles ! - Thanks for sharing your story - and best of luck . PS - You're a very like-able person .

[@TheMisssy2]

He was doing really well...wow....I wonder if he is still with us :(

[@jeanjones5550]

Robert Bowles is an adorable southern gentleman. His wife and family are so lucky. I hope that Robert Bowles is thriving.

[@HucklebridgeC]

What a concept, a pharmacist that gives hugs as well as answers to patients. Oh to get a hug when a person surely needs one. Love Robert's willingness to share his story w/us. God bless you and your wife and to you Tammy for the format. Love from Texas, Carol

[@smaroulis11]

Amazing intellect & gentlemen.

[@conversationsincare6671]

Thankful to have him advocating for those with LBD. He is amazing and kind!

[@Verisetti]

What a wonderful man, I am so sorry for diagnosis, sick sick disease. You helped a lot in explaining what to expect. Hugs to all.

[@t.l.hansen9649]

What a special guest. It's hard to say (write) this as I hope it doesn't come across the wrong way... but he's actually blessed to have the family relationship(s) he's got and his pharmacy background and training -- as it allows him to be this wonderful advocate, educator and mentor. He seems to be doing very well, yet you know by listening that it's been a difficult journey. I hope he continues doing well and those of us who watched, we look forward to your having him on as a guest again!

[@mrs.e3909]

Good job Robert!! This condition is not even on the radar of GP's, geriatric doctors, psychological counseling centers or other specialists who see our senior population. I am appalled by how easily they dismiss people with these symptoms. Families are affected everyday as their loved ones go un-diagnosed. Keep up the good work!

[@leeannegalovic9366]

This was an excellent interview! My heart goes out to him and his family. I have a former co-worker who is only 60 and recently diagnosed with LBD. I want to share this with her and her family. Thank you for all that you do Tami!

[@missourimom9140]

Such a lovely gentleman! I hope you're doing well and your wife, too. Thank you for sharing your story and God bless you and your dear family. Hugs from Missouri!

[@toryberch]

According to the Upson Beacon Robert C. Bowles, Jr., Upson County pharmacist for more than four decades and dedicated advocate for families affected by Lewy Body Dementia, died Friday, Dec. 30 at age 75. Owner and pharmacist of Big C Drugs for 38 years, Bowles received a diagnosis of LBD in June 2012. After retirement, he dedicated much of the remainder of his life to bringing awareness of the disease.

[@conversationsincare6671]

Gayla Trice my heart goes out to you and the reason I want to share these stories is so that we can help caregivers and families to better understand the disease and how they can be more effective. Please do not be too hard on yourself. I myself have learned so much by meeting Robert and other persons with dementia. The more we can shed light on this disease the better for everyone touched by it!

[@deborahwainwright4597]

I heard someone mention on utube recently that she on occasion takes her husband out to eat at “Dementia Friendly Restaurants” in her city. I was amazed to hear of such a thing. She stated that the atmosphere was much quieter, the waiters/waitresses were trained to help make the experience as pleasant as possible, etc. - - what a great concept. She never mentioned her location.

[@juliamundt101]

Agreed- however, these restaurants need FAMILY restrooms so spouses can assist with toileting.

[@emilycorwith1119]

Thank you for this conversation ... very helpful.

[@nannybeth55]

My husband has been diagnosed w Lewy Body. I’m trying to care for him at home. It’s so difficult

[@davidlo168888]

How long your husband has been diagnosed with Lewy body dementia? Only God's mercy nano-medication can effectively treat dementia, including LBD. Now one American LBD who was diagnosed ten years ago is being treated by God's mercy with good result. If you're interested in God's nano-medication, please contact [e-mail] All glory belongs to God !

[@lindauribe6872]

I just lost my husband to it.So so hard.

[@stevenhastings1480]

Wife's dad has it diagnosed early last year he's had it years before undiagnosed as well as the paranoia, the memory loss they always thought was from his motorcycle accident brain damage he had years earlier and the drugs he was taking for phantom pain. Now he has lost track of days time sleeps alot Got told it's to the stage where he needs to go into a nursing home, still recognises faces at what stage of the disease would he be at how long has he got left terrible seeing someone at a young age of 64 with a body of a fragile 90 year old

[@mitziehiegel4507]

Mr. Bowles admirably addressed the caregiver section of the International LBD conference at the end of June 2019.

[@Smokeys911]

Any update for Mr. Bowles? Wonderful man. God bless him.

[@elainieg]

ah, what a cute man, I wish him all the best and his wife and family.

[@BlinkinFirefly]

Robert seems like such a wonderful man. =) I started looking up Lewy Body ever since I heard Robin Williams had it. When I looked at the symptoms I realized that many of those symptoms match what I have been experiencing, though my symptoms are (doctors believe) more related to a severe form of Premenstrual Dysphoric Disorder or PMDD. Its very scary and sometimes a have hallucination-like symptoms. I'm still searching for answers in how to deal with it. This video was very informative and eye-opening. Thanks for sharing with us. I feel like I could chat with Robert all day! =D

[@lindauribe6872]

My husband would fall every day and then could not walk and talking became hard..He passed away recently..He would see people from the past..He had Lewy Body and FLD.

[@smaroulis11]

And an amazing wife!!!

[@conversationsincare6671]

I would agree!

[@tootsla1252]

My dear first cousin has revealed that she was recently diagnosed with Parkinson’s. I don’t know if she has been diagnosed incorrectly or if she is hesitant to be open about LBD. I spent several days with her last year on a camping trip, and I knew there was something wrong with her. She clearly has LBD. She has had hallucinations that she insists were real - such as her deceased mother appearing to her - not dreaming, but actually standing in her room. Her movements are very slow and deliberate. She has a slack facial affect. She is very paranoid, convinced that a woman at a Highway rest stop was plotting to knife her. This lady was an Air Force officer and recently retired from the FAA. These symptoms were not obvious until recently. I’m very concerned.

[@wanjuchien4208]

Thank you for making this video. It is great help as there is very little info about this disease esp coming from the person who suffer this. My mother has DLB I am pretty sure although back in Taiwan, the doctors only recognize the dementia and for years she has been heavily medicated with all sort of medications ( HBP, diabetes ....) esp Bipolar - resperidal - which did a lot of damage to her mental as well as physical health. I wish I had found out she has been sick earlier as I live in the US from 1985 - 2012. Her health has taken a sharp decline in 2008 - 2009. Before that she was quite "healthy" 83 years old. She has had sleeping problem as far as I can remember as an teenager. All the medications further this problem until I stopped all cold turkey ( which was the right move ) and replaced with fresh fruit and vegetable juice, gluten and sugar free diet. Her health was significant improved until coming to the US in 2014. Lacking of the sun exposure seems to take a toll on her health as she lived in the subtropical most of her life ( TAiwan). I have started her on LCHF diet lately even she lost a lot weight after a recent fall. She survived the surgery, however the medication took a lot of life out of her. Nothing worked to bring back the good gut health until I started to make fermented food ( Yugurt, probiotics even store bought fermented food). with bone broth, lots of fat and green juice. We'll be moving south soon to get more sunlight and seafood ( which is her daily diet in Taiwan and tropical fruits) and organ meat. I am pretty sure that she will heal quicker with plenty of sunshine.

[@flygirl2172]

I wish you had been my pharmacist....I have not encountered many loving pharmacist. Kind karma.

[@sheilanau6973]

I'm trying to do a little research for my dad. I think he may suffer an early onset of LBD, he (66yr old) is extremely forgetful (he has flooded his apartment a few times because he forgot the sink was on), he also claims he suffers from morgellons (he can pull 'fibers' out of his skin, feeling bugs on him). He can get extremely defensive and moody when you try to reason with him that these could be hallucinations. He also has an extreme hoarding problem which is causing his apartment to be unlivable. He cannot focus on more than one task at a time without getting distracted by something else. He has difficulty with basic problem solving etc. And last but not least I notice his head slightly shakes/bobbles uncontrollably but he is unaware of it. Before I can convince him to see a doctor I have to find my own diagnosis first. Am I on the right path here?

[@tajmanchandapanniker8762]

Yes...u are right

[@mefazar]

Hey any updates on ur dad? I’m sorry for everything ure going through

[@sheilanau6973]

@@mefazar Sadly things have only gotten worse since my original comment. My dad is now 70 yr old. Has been living (squatting) in a storage unit because rental prices were too high for his fixed income. His unit is packed with useless broken items or other tools he will never use again and he sleeps behind a pile of junk with his mattress on the ground. He has a sever foot problem (one foot is turned out at a 70 degree angle, his toes are curling in and turning blue. He walks with a cane and can no longer stand straight) He has lost all of his teeth and now only weighs 150lbs. I have taken him into my home twice in my adult years. Our family has grown and after speaking with my husband it is just not an option at this time as we have strict leasing guidelines and cannot risk eviction. I have tried to talk my dad into going to the hospital, or a state facility but he refuses to be separated from his dog. We live in Arizona where the temperature can get as hot as 130 degrees in the summer. It was just 105 the other day. I fear he won't make it through the summer. I'm losing him and it breaks my heart to see him go through this. Adult protective services were no help to me. Even when i told them he will frequently lose control of his bladder. I tried to schedule an intervention at my home but they would only meet him at his storage unit and stated an ambulance was all that could be done.Sorry for the long reply. I'm at a weird place of mourning and compassion fatigue. This was once a man who would give me piggy back rides, hold my hand before crossing the street, he was the strongest person in the world and I'm now left to watch him slowly fade away. I will do my best to convince him to go to the doctor and i will glady take him. I hope he says yes.

[@mefazar]

Sheila Nau thank you for your reply. I’m really deeply sorry for what you are going through. I understand how tough ur situation can be. As a daughter it is also so difficult for me to watch my dad fade away. He use to be the one i could rely on and lean on. Stay strong and positive, I know it’s difficult but everything is going to be okay. I guess your dad’s cognition did not decline in last four years, right? Convince him to stay at nursing home. And did u take him to any doctor eventually? And if u did what was his diagnosis? Cause depending on his situation u can use some help.

[@cabinlifeatedensprings1710]

We were just told that my father in law is falling because his blood pressure is dropped. But we know so much more. The hallucinations. The yrs of issues that all are completely identical to symptoms of Lewy body. He spent 5 months in the hospital and 2 nursing homes this year. He is totally unable to care for himself. Then one day he will get up put on his jeans walk around saying I’m fine I don’t need my walker. The next he sleeps all day. Falls. Here voices. Ask over and over the same questions. He will want to watch a movie but he can’t follow it. He gets so confused it’s not fun for him to watch a movie. He soon will go for a day at the V A to get a proper diagnosis. Fortunately my husband has had control of his medical and financial issues since his mother died 15 yrs ago. He has been very ill my husband s entire life. I definitely want him tested for Lewy body. I will not stop until we get the proper diagnosis. My husband’s sister told my husband that she did not want their father to call her number. When he did call her from the nursing home she would yell at her father. We had to take my father in law out of the nursing home or they would have killed him. And we do not trust the sister around him. But she will not come around. It’s not her problem. I see it as that we need to keep him safe. We had down sized to a home in the country where we can get nurses that will come to the house. I am disabled with psoriatic arthritis. But I can set with him. And call a neighbor or a nurse or my husband to come home. And if he needs at some point to be home full time we will make it happen. It amazes me that a daughter can just yell at a very ill father and tell him I’m going to put you in a nursing home. She jumped all over my husband because she and her three grown children who none of then work could raise a finger to help. She took the lawn mower from my father in law home to make it harder for my husband to get the grass cut. When you are caring for someone, their every need you do not have times to play games. I thank you for this interview so much. I look forward to the good days we’ll have with my father in law. He is a good person who can not help what has happened to him. LA

[@nonacee5065]

Update....Still alive in Feb 2019, gave a talk.

[@juliamundt101]

Passed 12/30/2022 @75

[@nonacee5065]

​@@juliamundt101thanks for the update.

[@kkdoc7864]

Some antidepressants are awful for certain dementias

[@ipaint7263]

My mom has advanced LBD and has to be cared for in every way. How did you recover enough to make this video?

[@charlesmonteith2897]

Exactly, as I said before, you don’t recover from LBD, it only gets worse. My husband died with it after 3 years from diagnosis. This man would not be able to have an intelligent conversation or any conversation at all after being diagnosed in 2010, it isn’t possible.

[@DONALD1951]

The key word is advanced! Some people get worse gradually. With LBD one could still have pretty good days. I’m sure his doctors know much more about him than you listening to him for 15 minutes. Can’t understand why some of you are doubting his diagnosis.

[@aprilapril2]

It cN develop over 25 years!

[@aprilapril2]

I’ve cared for a man with LB and he did recover for about nine months then suddenly declined again. He passed away from heart disease

[@juliamundt101]

For who ever is reading this, my 60 yo husband had symptoms 5 yrs ago of LBD. He has been bi-polar 30+ years, but well managed with medications. 2018 he had a Long hospitalization, due to manic episode & highly sensitive to anti-psychotics. It nearly killed him. Yet no diagnosis of dementia or LBD. They played “whack-a-mole” with symptoms that seemed to come out of nowhere. Since then it has been ups and downs, we moved states to seek better healthcare options, and have had many good stable months. He could play bridge online, but slow, almost unnoticeable decline cognitively. He slept a lot during the day, odd gait, developed a resting grimace face, runny nose, stiff muscles, shuffled walk, vacant look, uninterested in learning new things/meeting people/travel, leaning over sideways when sitting, and the ever present tremor that made it hard to type/eat. We compensated (I took over the family finances, he gave up driving), and we persevered. Recently he had a bad reaction to a minor in- office surgery. He got depressed, looping delirium & paranoid set in, he wasn’t sleeping, anxiety through the roof. He would be normal in the morning and by lunch either mumbling & trembling or severely agitated with paralyzing irrational fears. All things we saw 5 years ago!But this time He was suicidal. 2 weeks In patient Psych ward sent him to hospital ER, because this wasn’t normal bi-polar, they suspected dementia. The accumulative medical history (including Parkinson-isms) screams LBD. Unfortunately, with each hospitalization, his baseline is set lower. He was highly intelligent, and likely had a lot of brain reserves to draw on that got us this far.

[@QuiteComedic]

108 subs? No way.

[@henriettahenson]

My mother has lewy bodies dementia in the beginning she had haluciation s ...but she would Never have been able to give an intelligent interview like this she was very bad in conversation and explain ING things in words because she would jumble everything up and it wouldn't make any Sence . So this gentleman seems to have less dementia than most of us ...What a guy 😍God bless him 😍

[@mefazar]

henrietta henson yeah my dad is in the same situation unfortunately. I’m sorry for ur mom btw.. how is she rn?

[@henriettahenson]

Hi yes thankyou for asking my mother now 92 this year is still going... She dose not know who we are now... Its tuff but she is well cared for and I pray the Lord will take her soon because I don't want her to get this awful coronavirus... She doesn't deserve that.. You stay safe now... ❤️🙏❤️

[@mefazar]

henrietta henson thanks for ur reply. I wish the best for u and ur family. Don’t worry and stay positive. I send her my prayers. 🙏🏻🙏🏻🎈

[@henriettahenson]

@@mefazar ❤️🙏❤️

[@thepatriotpartyofamerica]

I have Parkinson’s and I pray I don’t get lewey body dementia

[@aprilapril2]

becky Sawyer Lewy body and Parkinson’s brain changes are pretty much the same

[@kyriekayhalford3501]

becky Sawyer you won’t!!! Praying

[@truthfulkindness]

Thanks for sharing PWD Perspective. Am posting your blog entry with this week's "PWD Perspective" newsletter at paper.li/f-1408973778. Also your blog is now added to PWD matrix at truthfulkindness.com/about/links/. Again, thank you for sharing. -- Full legal name Truthful Loving Kindness

[@conversationsincare6671]

Thank you for sharing this video with your group. The face of dementia is changing and after working in this industry for almost 20 years I am so happy to see so many PWD sharing their stories. This helps to change the perception of the disease that so many view as a death sentence.

[@charlesmonteith2897]

There is no way this man has LBD. It never gets better, only worse. Having being diagnosed with this in 2010, he would not be able to carry on such an intelligent conversation, he wouldn’t be talking at all. My husband died of it after being diagnosed 3 years earlier. A person does not come out of this and get better, it only gets worse.

[@DONALD1951]

Charles Monteith from what I read everyone is very different. Some people show severe signs right away...some gradually get worse...Stephen Hawkings ring a bell?

[@tedbaker8291]

I had the same impression, based on experience with my Dad, who can barely put two sentences together, who has no concept of time, seasons, or calendars, and who is either completely clueless about his LBD or in complete denial. But my Dad is my only experience with LBD and it's not for me to say.

[@mefazar]

Ted Baker exactly. Actually my dad is exact the same as urs. How is ur dad?

[@juliamundt101]

This gentleman is fortunate to have the benefit if relative early intervention, & a good support system to assist him managing his LBD. God bless him & his family.

[@gretchenmreminting2887]

Sad disease=Alzheimer's!:'( SOo... many other diseases aren't " AS HARSH!";'(

[@MrVanhovey]

Cannabis!!!