Living With Lewy Body Dementia and Parkinsonism | Patient Perspectives | Being Patient Alzheimer's

Comments · 67

• CA

  @carolannecole3252 · 5 years ago

  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.

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• DO

  @DONALD1951 · 5 years ago

  Lonnie should start a you tube channel to share her journey.

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• MI

  @michellek5868 · 5 years ago

  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.

  7

• AN

  @annkane8364 · 1 month ago

  Just read that this lovely lady passed away in November 2022 aged 68. RIP Lonni.

• LO

  @lorraineophoff4984 · 6 months ago

  Thank you so much, Being Patient, this organization is so VERY HELPFUL,

• TO

  @toryberch · 3 years ago

  Update on Lonnie please 🙂

  5

• RI

  @rital7518 · 3 years ago

  FASCINATING!<br>THANKS SO MUCH LONI!😅

  2

• ED

  @EdwardCollins-g8g · 2 years ago

  When I see someone as amazing as she is, I wonder where they are in the progression of the diagnosis (year 1,2, etc…)

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• WE

  @wendypetersen7529 · 4 years ago (edited)

  God bless you for doing this. &nbsp;My father has LBD but has his own reality in which he&apos;s perfectly healthy and his mind is whole, and the problem is with us. Sometimes he gets very angry. &nbsp;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. &nbsp;It&apos;s very real to him, and so there&apos;s nothing wrong with him. &nbsp;It is difficult because he still thinks he can go out by himself and be left alone, which we would never think of allowing. &nbsp;I wish we could find a way to meet him half-way with all this.

  2

• LE

  @lesliehaas1986 · 5 years ago

  Very informative and my prayers are with you

  5

• LI

  @lindadavis8853 · 1 year ago

  She was so helpful. Amazing lady!

  1

• TH

  @themancaveman-t3q · 1 month ago (edited)

  My mother was diagnosed with DLB this April. She started showing bad symptoms a year ago. Auditory hallucinations, severe anxiety, sleep disorder and delusions. I began staying with her at that time, to the detriment of my own family. It was unsupportable. She would be up all night, and so was I. I was strung out and unsafe driving. It was horrible. She suffered a fall this February and is in a SNF for LTC and I&apos;m trying to get her care set up. It&apos;s a lot of work, very stressful and tiring as no family members want to help. She needs more care than I can provide as she has increasing problems with mobility, and my own family would suffer. It&apos;s such a nightmare. The costs are staggering; I&apos;ve spent down her assets as her POA and will probably have to live in her house as my spouse and I currently pay rent and will have to take her over her bills and it will be unsupportable. Her house is paid off.