Lewy Body Dementia by: Don W. Kent

Lewy Body Dementia: A Patient’s Perspective
By: Don W. Kent, Retired Board Certified Attorney
Presentation to UT Tyler Nursing Students and Health Care Professionals - February 15, 2019

[@robertyoung1777]

Great presentation! My father (also an attorney) diagnosed with dementia in his 90s, had very similar symptoms and hallucinations as those you described here. We suspected Lewy Body dementia. Fortunately, his visual hallucinations did not cause him significant distress even though some were violent. Most of his hallucinations where more like magical thinking, for example, seeing a dog fly by his window. His caregivers and family didn’t argue with him about the validity of his hallucinations - just listened. Thank you for describing your experiences and yes - get guns out of the house in a situation like this!

[@dnice3473]

Thank you so much for sharing. I am taking care of my dad with LBD… I am a single dad to a 3 year old boy also. It really helped to hear from your perspective how things are! Thank you

[@carolynmccoy209]

Thank you Bruce for sharing. My Mom had Parkinsons and LBD. She passed away in 2006. She would hallucinate somedays and be totally lucid the next day. When she was originally diagnosed she decided to travel by plane and train. She went to Europe and visited many countries. She was taking Sinemet at the time which helped her with the tremors. Her only complaint was being easily fatigued. She lived for 25 years with Parkinsons. She died at the age of 87 from cancer.

[@TeenaFraser]

Ll

[@ListeningLifelines]

What an amazing talk, thank you so much for sharing. I work in the dementia wing of residential care and took every word to heart.

[@Jeff13th]

Mr. Kent, Thank you so much for sharing your story of LBD. My mother (82 years old) has been on a similar journey for at least 6 months and maybe more, although I just learned about her symptoms around a month ago. It was that at that time I found out she was having hallucinations and delusions. I immediately got her into a neurologist who had her do a CT Scan which showed her brain mass had shrunk more than would be expected. He suggested I read about LBD. So I have been actively trying to learn about LBD and figure out what I can do along with the rest of our family. I have set up an appointment with a Geriatric Psychiatrist in a couple of weeks in hopes that she will help us coordinate the efforts to manage the symptoms. We will look to do more as well. However, I did not really want to comment to share her story but rather to express my utmost respect of you for sharing your story and providing an education on the topic. I appreciate your courage - it actually brought me to tears. That was a good thing because I needed to cry about this situation. As you well know, it is a scary one but as you noted, it needs to be treated with dignity, care, and understanding. It should not be stigmatized but rather understood humanely. Your sharing showed the immense amount of humanity you possess. Best of luck in your journey. I hope the bumps in your road are smoothed by the love of your family and friends. They are fortunate to have someone like you in their lives. Jeff

[@livlovely2707]

It always helps to share your grief or stress. There are good people online who can be of help; but just know that you're not alone....Blessings to you....🌻

[@robynecoleman344]

Thank you for sharing your personal story. This will help us working with lewy body and other dementia illnesses, or one day living with a dementia disease. Thank you for the well presented educational presentation. It will be helpful for a lot of people for a long time time come. Na maste.

[@lindakusse2515]

Thank you for making this video. It certainly helps l My husband of 56 yrs was just diagnosed with Parkinson. Glad that you know Jesus! Love n prayers are with you n your family.

[@avavincent9481]

Again I want to thank all who share their stories. I lost my husband in 2020 to dementia and still we struggle with aftermath from the many tests and endless attempts to get answers all the while watching him slipping away. Truly a cruel disease 💔. As adults we were so caught up with finding solutions, it was our 2 grandchildren who were the 1st to see changes in him over atleast 10yrs.

[@brendadickenson3547]

You explain it so well! Thank you.

[@bluefluke7585]

Awesome, Don. Thank you for giving us this wonderfully understandable explanation of your experience with Lewy Body Dementia. I'm in that awful place where the doctors are conferring about my many and varied symptoms. I kind of know where it's headed and your presentation has given me hope that whatever the diagnosis will be, I'll be okay with it. There are many available resources. I've always hated to ask for or accept help with anything. Now, I've had to stop driving, traveling, and even just going around the neighborhood by myself. Because I've fallen so often, I was given a 4-wheel medical mobility scooter. Well, that's over now, too. I've blown over the curb too many times. My brain just doesn't perceive the end of the pavement and I go flying off the edge at full speed. I actually have a private pilot's license, so not very much frightens me, but my better sense tells me that maybe I should at least be a little anxious when I do these unacceptable things. Now I use a walker and gratefully accept help when it's offered. Thanx for helping me see that it needn't be the end of me. At least for a while. I guess we just keep on keeping on. After all, to surrender means coming over to the winning side.

[@janelensch6168]

Just found our my precious friend 75 yr old retired police lieutenant. Polish background has this. Excellent positive attitude, trusts the Lord, has had general life's complications. Spouse is wonderful but dealing with cancer issues. My friend just diagnosed with Lewy Body Dementia. He knew me at our last conversation. We laughed at that. What a shock as a younger friend lived with difficulties of LBD last 15 years. This is just such a cellular mess to those who were not careless in their life. Prayers for those who have to give up lovely retirement years to a disease that will be a challenge years from now.

[@angelasancho8078]

Just lost my husband to LBD with Parkinson’s. Sadly I found this after his death. Please reach out to Christus Mother Francis @Tyler. They did not have this knowledge! Thank you for this.

[@davidcox7578]

Don, very excellent talk especially your deep insights which seem inconsistent with a diagnosis of LBD. I am courious to hear more from you about your understanding of how you have been spared and retained your capacity for insight, logic, and reason. Also, your skill using words to communicate seems not only unimpaired, but at a level to match or rival our most effective teachers. Please continue to share your story! ✡

[@edhook2239]

Amazing presentation as a carer it gave a great insight into my wife’s LBD

[@mcc1483]

you are an incredible guy Don. Thank you so much for this amazing presentation. My dad had LBD, and i've been by his side for last 4 years. you are right on the money. so grateful for your presentation..

[@kendrickbrad]

Thank you for doing what you do for Lewy Body Dementia. I’ve been dealing with my journey for over two years. 10 Neurologist and many other doctors. My last Neurologist after taking SYN-one test and testing positive said there is nothing more he could do. I’m now looking for another Neurologist to help me with short term memory. I know there are drugs that can help me. If there are any doctors in Texas that can help me I would like to have a list if possible. Your awesome. Thank you

[@crolmac]

Thanks. My mom died with this disease, and since she had parkinson symptomes, the doctor, a neurologist, did not agree. But most the other signs, she had. He gave her the antipsychotics. Unfortunately, 12 years ago this illness was not easy to find on the internet, and we could not find the right info at tne time. It has greatly evolved since then, which is really good. Her sister visibly received the diagnosis, a few years ago.

[@tesssiegel5754]

We found out that a family member had LBD only by reading the death certificate. The doctor later apologized for not telling us.

[@louieb.free--brainfoodfrom6107]

outrageous

[@maryellenfujihashi2309]

Thank you so much for this presentation, Mr. Kent. I am a caregiver in Tokyo. I am always searching for ways to better understand and come alongside my clients. You have helped me a great deal. I admire your willingness to be so honest about all of your symptoms as well as feelings. Thank you again!

[@davefile3943]

this is an incredibly accurate presentation. absolutely correct about the incredible danger of anti psychotics.

[@HeyMJ.]

Thank you for sharing your journey with others. I greatly appreciate your candid, empathetic, and extremely informative LBD presentation. Blessings to you and yours. 🙏🏼

[@RitaNonyeUgokwe]

I appreciate so much the talk on LBD and Neuro degeneration diseases.

[@superhumanryze]

You speak very well having so many symptoms. Thank you so much for this presentation Don.

[@vikirivera5609]

Thank you for your presentaion. I only wish I had seen this 9 years ago. After hearing this I feel he may still be here. Everything you said so applied to him. He passed 8 months ago. His original diagnosis was Parkinson's around 2021. Then while in the Hospital in 2022 the hospitalist felt he had LBD. Yet, non of his neurologist wanted to commit to that diagnosis. By August of 2023 he pasted @ 72 yrs old they say of Parkinson's Dz. No autopsy was done but, I wish it had been so I could of had better closure. Thank you again and God bless you.

[@rbt2112]

A great man Helping others God bless him

[@memomorph5375]

Thank you for this presentation! It really illustrates and informs the viewer about the disease in a new way since the presenter has Lewy Body disease

[@mattcates8325]

Thank you for this video. My mother is 75 and showing some off these signs.

[@nancymc]

excellent and candid presentation. You are so appreciated by all of us. Your courage and determination is what has kept you going this far.

[@toryberch]

This talk helped me to sort out my symptoms of my new diagnosis of Lewy body..I live just above you in Oklahoma and I know the mentality of tough it out. I'm learning to know what to expect and for me that takes the scare out of it

[@charlotteb2578]

how do they diagnose it?

[@janelensch6168]

Tory, watch your diet, chronic diseases seem to be helped by stopping sugar, up your natural greens, hit protein, limit dairy. Research what active scientists are recommending for LBD. It is like being diabetic, we must give up all sugary foods and severely limit carbs. Most cultures include pasta, rice, potatoes, bread. Super hard but I have to save my organs. I am very aware what you may hear but why not? Bless you and carry on. I say yes to all opportunities, one day I will be feeble and have wonderful friends & family.

[@worldrampchris]

Thank you so much Don. Your story helped me start my journey. I was diagnosed with MCI in November 2022, but my symptoms are that of DLB and BvFTD

[@sam-fc9ky]

May the blood of Jesu heal you all

[@brendayeary3653]

You are great! This was so good.

[@ronmorrison1964]

Thanks for your presentation!

[@gaildunne8307]

Wonderful presentation thank you from the bottom of my heart ❤️

[@gabriellasaibene904]

My deepest admiration and respect

[@edwardb7811]

Very informative and helpful.

[@djb9689]

Thank you for this video. There are a lot of videos out there but, it is so helpful to hear the facts along with your own experience. Instead of only listing the general symptoms, you get a feel for the real life fluctuations. It is difficult to understand that dementia symptoms can be present one moment and not the next. As a family member that is not sure what is going on, It would be hard to know if it is attitude or issues in the early stages.

[@karencrecco2922]

What an articulate man!

[@lindamannix1247]

Thank you for you great information . God bless you !!

[@kathyf7862]

Excellent information! Thank you!

[@darlenewinter5794]

Denis is definitely loved by his beautiful parents and all of us.Denis is a such a handsome, and a sweetie young boy. He seems to like music alot, it is good for the soul. Sending love and hugs from Minnesota USA 🇺🇸 ❤❤❤

[@thomasstolzenburg9247]

Very, very impressive!!! I am wishing you all the best !!!

[@marialock007]

Thank you for this eye opener presentation.

[@louieb.free--brainfoodfrom6107]

thank you for this

[@janedodson7583]

Thank you for helping others! God Bless.

[@wanimorgan6811]

THANK YOU.

[@okomojelepo]

Thank you,my mom was just diagnosed

[@marilucearaujo-cox5438]

Excellent information, thanks.

[@user-hq5hs7bt2c]

Bravo ❤

[@Angeleechie]

Thank you. 😊

[@user-oc2qd9hj8f]

Pure men!

[@annettelutgring3668]

You were so informative. I would love to speak to you. My husband passed away 6 years ago with LBD. I donated his brain to the brain research center. I have a full report you may be interested in reading. He was originally diagnosed with Picks. How can I get in touch with you?

[@KristiLEvans1]

I would contact the UT Tyler School of Nursing, and reference this video, mentioning Don Kent.

[@annettelutgring3668]

Thank you

[@lindamannix1247]

Oh God, not snakes !! Terrifying to think on.

[@joycewilson4939]

It now becomes apparent why Robin Wiliams killed himself: all LBD symptoms.

[@cherylween4973]

But most people with LBD don't kill themselves. My mother died with it and she was happy.

[@cherylween4973]

My mum died almost a year ago and she had Lewy Body Dementia, as well as Multiple Myeloma and Breast Cancer.

[@janedodson7583]

Do you have any connections to help me in Central Illinois to find a neurologist that could help my husband?

[@connieresslerreiter6664]

Thank you very much. I believe this was what my mother had before full blown Parkinson took over. Do you know if this could be hereditary?

[@81i2b49cj]

Thank you! Wishing you all the best. Any updates?

[@judyrodriguez6231]

You may be interested in trying to change your diet. The wrong food can cause a great many health issues of which I can attest to. I’m not a doctor but you may want to somehow get in touch with Dr. Mark Hyman. He may be able to help you or at least point you in the right direction. He is a holistic M.D. and has helped many people with life debilitating diseases. I pray you find this some what helpful. God Bless.

[@joyboyle2956]

Wonderful news

[@petercyr3508]

Should be called metabolic/diet induced/ketone deficiency dementia.

[@user-pe2yx9kt4e]

6:52

[@valeriewhite4158]

YES VAL ERIEWHITE

[@louieb.free--brainfoodfrom6107]

IamLewy