Living With Lewy Body Dementia and Parkinsonism | Patient Perspectives | Being Patient Alzheimer's
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- Опубліковано 4 жов 2024
- Lonni Schicker had spent most of her life being active, and working as a nurse and a teacher. But that all changed when she was diagnosed with Lewy Body Dementia (LBD) and Parkinsonism, which is different from Parkinson's disease.
As part of the Being Patient: Perspectives Live Talk series, we spoke with Lonni about coping with the diagnoses.
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![[Ep: 6] Caring for a husband with Lewy Body Dementia](http://i.ytimg.com/vi/popZjO7G980/mqdefault.jpg)
Lonnie should start a you tube channel to share her journey.
Lonni is so well spoken that it is hard to imagine she has any difficulties. I am so impressed that Lonni was able to share this, and grateful.
I thank dr ituahome that everything is fine now that am doing well, and the hospital have also confirmed that i am now negative of the #herpes, which almost took my life Please if you know you facing Same such situations
Update on Lonnie please 🙂
When I see someone as amazing as she is, I wonder where they are in the progression of the diagnosis (year 1,2, etc…)
OMG I'm so sorry. You're so young. My father was just diagnosed, but he's 88. Thank you for sharing your story. Peace.
Very informative and my prayers are with you
I thank dr ituahome that everything is fine now that am doing well, and the hospital have also confirmed that i am now negative of the #herpes, which almost took my life Please if you know you facing Same such situations
Thank you
I am not sure how helpful it would be, but if the patient is self-aware enough to carry/use a smart phone (with easy camera access), could taking a photo to confirm that yes it is an hallucination be calming or would the patient continue to hallucinate when viewing the image on the phone's screen. I admire Lonni Schicker for her courage and compassion in agreeing to participate in this interview. This interview happened over a year ago as I post this, I hope that she is content and cared for.
Please give us feedback on Lonni 🙏🏻
Thanks for sharing your story is so true for me too. I don't have to feel so lost. But supported. Thanks very much Lonnie. S.
I thank dr ituahome that everything is fine now that am doing well, and the hospital have also confirmed that i am now negative of the #herpes, which almost took my life Please if you know you facing Same such situations
God bless you for doing this. My father has LBD but has his own reality in which he's perfectly healthy and his mind is whole, and the problem is with us. Sometimes he gets very angry. He is blind, but his hallucinations he sees very clearly. Several times a week he comes down to my room to tell me strange things - like someone being in the house and turning on the lights. It's very real to him, and so there's nothing wrong with him. It is difficult because he still thinks he can go out by himself and be left alone, which we would never think of allowing. I wish we could find a way to meet him half-way with all this.
Thanks for sharing your path with this disease.
I thank dr ituahome that everything is fine now that am doing well, and the hospital have also confirmed that i am now negative of the #herpes, which almost took my life Please if you know you facing Same such situations
Not sure (yet, hopefully) what I'm going through, but this video was quite comforting. Thank you both for taking the time for this conversation.
I also wonder how much effect that past head injury can be related to Lewy bodies!!
I was diagnosed with Lewy body dementia and spent 2 years in a nursing home. What hurts is that the symptoms were there at least 10 years ago yet my family is angry and resentful of my having squandered money
Don't they realize it was part of the disorder. Fortunately for unknown reasons, probably iatrogenic antipsychotics, I have recovered and am home but members of the family still blame me.
What were your symptoms…. And how are u doing
@@cynthia3536 Hi Cynthia: Thanks for asking. I'm an 84 year old retired speech language pathologist who spent two years in nursing homes bedridden, aphasic, hallucinating, tremoring, paranoia, lost over 110 from anorexic delusions in months but when on hospice with two weeks to live and all curative and anti-psychotics were removed began to recover mysteriously. I'm home thinking, walking and speaking clearly writing my memoir, on only one medication for mild hypertension cleared of dementia. I'd be honored to send my story if you provide your email
@@Ginger51937 oh wow that is amazing how were you diagnosed with dementia?
@@cynthia3536 I was diagnosed by my Kaiser medical team neuropsychologist. They also diagnosed me at one point with frontoemporal dementia both only being able by observation of behaviour as of yet. Since I recovered and passed neurological testing they officially took dementia off my list of conditions at my request. Now they added mld cognitive impairment which I m also going to object to.
@@Ginger51937 why did they choose to leave mild cognitive imparement?
My dad kept saying something isn’t right! He was first diagnosed following rehab for pneumonia with Alzheimer’s he began to get angry then depressed then came the delusions and seeing things not there also paranoia he began to develop stiffness and Parkinson’s symptoms his father had these symptoms also and was hit by a train during an episode of confusion my father died at 79 the best advice I can give is to see a psychiatrist share all symptoms my dad’s doctor was able to make the last years of his life so much better memory was not the biggest issue at testing more behavioral and movement!!
Thank you so much for sharing with us. My husband has all the symptoms and is going to a neurologist in February; hopefully to someone who can give us answers, since this doctor is new. I have been watching various videos to teach me how to deal with the symptoms of dimentia, but am concerned about it because I have no family for support. How did you find a support group? Does it help?
FASCINATING!
THANKS SO MUCH LONI!😅
Wow. Fascinating insights. My interest in lewy body dementia only began recently. My Mom (who lives with me) started having senior moments a couple of years ago. Then my sister died suddenly this summer, and that apparently sent poor mother straight over a cliff. First she fractured several vertebra and then it was just the end of the world. She began describing hallucinations which frightened her. I supposed the hallucinations likely resulted from lewy body dementia from what information I've found. I was extremely interested in the thoughts on the relationship with dementia and blood sugar metabolism. Yesterday, Christmas, my brother visited and kindly brought four pies, many cookies, and some candy. I seldom eat these, being on a ketogenic diet, Mom doesn't eat them because she feels they are not healthy food. But we both ate pie, cookies and candy for the occasion. Mom tried hard to put on a show of being OK. She became delusional during his visit but was trying to hide it from him, which she succeeded in doing. As soon as he left, she was distraught and kept asking when we were going home, what city we were in, where we were. No amount of reassuring her that she was at home helped. I puzzled over what had sent her down the rabbit hole, and realized that the sugar jolt played a role. Since then (one day) she has been on my ketogenic diet and so far is back to her old self. It was a remarkable improvement. Not to say we aren't seeking medical care. It's just that things have changed so fast it hasn't been adequately addressed yet.
I thank dr ituahome that everything is fine now that am doing well, and the hospital have also confirmed that i am now negative of the #herpes, which almost took my life Please if you know you facing Same such situations
very informative, thanks
THANK YOU SO MUCH LONNI !!!!!
Fantastic insight and capacity for self-reflection! Wish you all the best for the future! And hopefully a wake-up call for the american health system .
FDor Lonnie: Take a hand held mirror and point it at the hallucination... Also,I have read about type 3 diabetes and the improvements people have had being on a low carb diet. Look up Dr. Ken Berry's videos.
Also,my first cousin has parkingsons and dementia and maybe lewey body..She is six months younger than me and has significant neurological disability.
Thanks for taking the time to do this.
My had lewy body dementia and hernorjee sister had parkinsons.but mom was. Well until heart attack at 95. So thank you for clarification on a few things we all noticed
How is Lonni today?
Thank you so much for sharing. I am wondering what do you do/are able to do on a bad day or feel like doing? Do you rest in bed, watch tv? What helps? Thank you again. Your insight was so helpful. They believe my dad has LBD, so I want to learn as much as possible to help him.
Hopefully the 6-18 month windows she mentioned are not as long now :(
I truly believe my moms lewybody was caused by her diabetes n all the insulin she was told to take. It’s so hard to watch her suffer . I resent her doctors
You know the hallucinations are not real? My husband has the same thing.
I thank dr ituahome that everything is fine now that am doing well, and the hospital have also confirmed that i am now negative of the #herpes, which almost took my life Please if you know you facing Same such situations
How do i get a female friend to a neurological doctor when she is absolutely adamant that she doesnt need a mental assessment!
A big thank to you dr ituahome i just confirm am completely cure free form hsv1 with the help of his wonderful herbs medicine may God bless you and your wonderful herbs thanks so much
What do you see in her? And how come she doesn’t see it?
Lack of insight is one of the symptoms of many psych/neuro issues . Once she is a danger to self or others you may be able to fet the ball rolling by taking her to an ER or calling a county designated mental health provider. You might also call your local dshs office on other ideas.
Could you please let this lady know about the channel called "Beat Diabetes"? This lady needs to get blood sugars under control asap... very doable with the right guidance. Then please, please check out Amy Burger's book on Alzheimer's prevention and cure which is based on diet modification which helps the brain to switch from being fueled by glucose, to being fueled by ketones.
A big thank to you dr ituahome i just confirm am completely cure free form hsv1 with the help of his wonderful herbs medicine may God bless you and your wonderful herbs thanks so much.