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 Hello, I am new here 
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Joined: Mon Aug 18, 2008 4:20 pm
Posts: 2
Location: NE Ohio
Post Hello, I am new here
My Dad was diagnosed with PD about 10 years ago. Within the last year he has begun having hallucinations, does alot of things he shouldn't and seems to have an obsession with batteries and rewiring things. He is going to be 74 in Oct. He also has severe scoliosis and sadly often gets stares and such in public. I am an only child and trying to help my parents as much as I can. I joined for support and to try to understand my Dad more and lessen some of the frustration I feel. I have 2 kids, a girl who is 5 and about to start kindergarten and my little man will be 2 on Halloween


Wed Aug 20, 2008 9:41 pm
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Lizmommyof2,
Welcome to the LBDA forums.Joining to help support your parents is great, has your dad be DX'ed with LBD or are you thinking this is a possibilty? Just curious!


Wed Aug 20, 2008 10:43 pm

Joined: Mon Aug 18, 2008 4:20 pm
Posts: 2
Location: NE Ohio
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More like thinking it's a possibility. We are going through some drama with his Dr's. None of them seem to take a darn thing my mother or I say seriously because they've known my Dad most of his life and have been around him in a professional manner(my Dad was a banker, not a Dr but served on several boards etc etc) and they just say "Awww he'll be fine, just let him live his life" So anyways, sorry for the novel


Thu Aug 21, 2008 3:43 pm
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No apology needed, that's what the forums are here for:
Here is the LBDA Criteria from the LBDA, I often suggest people copy it and check off what they think applies and then take that to the Doctor!
I hope it helps!

DIAGNOSTIC CRITERIA - Central and Core Features for clinical diagnosis

CENTRAL FEATURE OF LBD(must be present for diagnosis of LBD)
- Progressive dementia ? Impairment of *activities of daily living (cognitive impairment) *Activities of Daily Living (ADL) Personal care activities necessary for everyday living such as eating, bathing, grooming, dressing, mobility in home and toileting (continence).
Instrumental ADL - Activities related to independent living and include preparing meals, taking medication, managing money, getting to places beyond walking distance, doing laundry, shopping for groceries or personal items, performing light or heavy housework, and using a telephone.

CORE FEATURES OF LBD (PROBABLE LBD may be diagnosed with the presence of dementia PLUS TWO core features, OR one core feature and one suggestive feature).
- Fluctuating cognition or alertness are periods of time when cognition and arousal are near normal in contrast to other periods of more marked confusion or hypersomnolence. (cognitive impairment or unknown combination of neurochemical alterations and possibly one or more sleep disorders)
- Recurrent complex (well defined) visual hallucinations. Profound distortion in a person's perception of reality, typically accompanied by a powerful sense of reality. (neurophsychiatric feature)
- Parkinsonism (motor dysfunction)

SUGGESTIVE FEATURES OF LBD (Possible LBD may be diagnosed with dementia plus either one core or one suggestive feature)
- Severe sensitivity to neuroleptics (anti-psychotic drugs) occurs in up to 50% of LBD patients. These medications can worsen the Parkinsonism and/or decrease the cognition and/or increase the hallucinations. Neuroleptic Malignancy Syndrome, a life-threatening illness, has been reported in persons with Lewy Body Dementia.
- REM (rapid eye movement) sleep behavior disorder (RBD), (sleep disorder)

================================================================================================================================================================

CATEGORIZING LBD SYMPTOMS

Five categories of clinical features that may be present in LBD

Cognitive Impairment
Neurophsychiatric Features
Motor Dysfunction (Parkinsonism)
Sleep Disorders
Autonomic Nervous System (ANS) dysfunction

1. Cognitive Impairment:

o Executive dysfunction; difficulty understanding complex or multi-step instructions
o Episodes of disorganized speech
o Disoriented about the time or present location
o Bradyphrenia (slowness of mental processes)
o Visuospatial impairment; depth perception and object orientation; directional sense impairment and geographic disorientation (lost while driving, difficulty navigating in shopping center or own homes)
o Verbal blocking; looses train of thought in the middle of a sentence or conversation.
o Short-term memory; decline in ?active? memory (15-30 seconds)
o Misidentification errors involving people; failure to recognize spouse or children

2. Neurophsychiatric Features:

o Hallucinations: visual (sight) auditory (sound), tactile (touch) and olfactory (smell).
Sensory perception experienced in the absence of an external stimulus.
o Systematized delusions; Capgras syndrome (delusions): belief that a known person has been replaced by an identical looking imposter; non-recognition of mirror image
o Illusions; misperception of an external stimulus; (perceiving chairs, lamps, or mailboxes as people or animals)
o Anxiety, depression
o Anger, sadness
o Agitation, aggressive behavior
o Apathy (lack of emotion, motivation, or enthusiasm)

3. Motor Dysfunction (Parkinsonism):

o Tremors (often postural and symmetric, resting tremor less common)
o Rigidity (stiffness of the limbs and trunk; resistance to movement)
o Facial impassivity
o Bradykinesia (slowing down and loss of spontaneous and automatic movement; ability to start and continue movements)
o Shuffling gait; Stooped posture
o Repeated falls from postural instability or impaired balance and coordination
o Difficulty with fine motor skills (tying shoes and buttoning)
o Dysphagia (swallowing difficulties)

4. Sleep Disorders:

o REM (rapid eye movement) sleep behavior disorder (RBD), including acting out dreams, yelling, flailing limbs, nighttime insomnia, daytime drowsiness
o Restless Leg Syndrome (RLS)
o Excessive daytime somnolence (EDS) (an inability to stay awake when sedentary)

5. Autonomic Nervous System (ANS) dysfunction:

o Orthostatic hypotension, (low blood pressure upon standing) dizziness, light-headedness
o Transient, unexplained loss of consciousness, syncope (fainting), vertigo, falls
o Weakness, fatigue
o Decreased sweating and heat intolerance
o Urinary dysfunction (frequency, urgency and incontinence)
o Constipation, diarrhea, and impotence
o Coat-hanger pain (head and neck)
o Weak or hoarse voice


Thu Aug 21, 2008 4:07 pm

Joined: Mon Sep 15, 2008 5:37 pm
Posts: 8
Post 
Welcome to this wonderful forum. The Drs. my Dad was seeing were similar in their seeming disregard for symptoms which only family got to experience. It is understandable that people with symptoms would not want to face their own symptoms or talk about them openly. My Dad's memory loss had always been joked about until other symptoms became too evident to ignore. Sometimes you have to second guess and find out what is really going on with your loved one indirectly. My Dad never expected dementia and certainly not Lewy Body but we are better off with the truth now. Stick with the forum and you will learn a lot.
Best Wishes! Keep the faith.


Tue Oct 07, 2008 8:25 pm
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