Re: Donna K./Inservice

[Guest guest]

Donna, I know what you mean. Some years ago, Jim was hospitalized and I gave all

the medical staff copies of documents from the LBD Links/Files and LBDA site

that said no HALDOL. I sat in the hospital for several hours making sure Jim was

not given Haldol and that they understood and I left to go home. Jim was

admitted for 3 or 4 days, can't remember the exact number of days. Jim was

looking well on the last day and I got a call from the nurse on duty saying I

could take Jim home and what time would I be there to pick him up. I said around

11AM and she said fine, he would be ready. Around 10:30AM I received a call not

to come, I was curious why, and the nurse said that the doctor had ordered that

Jim be given Haldol, because he was aggressive with the nurse getting

him preped for discharge and Jim was now not responding. BOY! did I fly to the

hospital. I was furious and asked to speak to the doctor. The doctor was busy on

rounds, but would speak

to me by phone. The nurse put me on the phone and I was spitting mad. I told

her that I left all kinds of papers describing that Jim could NOT have Haldol,

but the shift had changed and she didn't read the papers, but saw in Jim's

Medical Chart that he was on Seroquel, which she said is an Antipsychotic, so

she gave him Haldol. I told her that Seroquel is an Atypical Antipsychotic and

is more compatible with LBD. She apologized, but I was furious that she did not

care to read the papers that I had left. Jim was catatonic for almost an hour. I

kept trying to stimulate him by calling out his name and lightly hitting him on

the back of his hands and I did that repeatedly to try and get him to come

around and finally his eyes opened a little and closed and he kept doing that

and finally he opened his eyes fully. I told the nurse I wanted to bring him

home and she said if his vital signs were all ok I could and they were, so I

brought him home. The next

day he had his first seizure like behavior and I believe it was from the Haldol

and to this day he has one or two seizure type behaviors a month. It was so

scary. I told another doctor the next day when I brought Jim in for the Seizure,

that in my opinion the Haldol has caused this behavior and he said, " There is no

fact to that " Arghhhhhhhhhhhhh! I think finally they are realizing what Haldol

can do, but there are probably still those out there that have no clue.

Re: Inservice

Quoting Janet Colello <janetcolello@ yahoo.com>:

WOW that is great ! I wish I had it a few years ago when my Dad's

neuro sid LBD same as Parkinson ! and the pulmonary guy gave him

haldol !

yeesh

donna

> There are some people that wanted to copy my inservice presentation

> for Sept. 24, because of all the information on it. It has been

> edited by the LBDA with some minor adjustments, so this is the

> updated version.

> Jan*Lewy Bodies were discovered in the 20th century by Dr. Frederick

> Lewy, who worked along side Dr. Alois Alzheimer. He identified the

> relationship of Lewy Bodies to Parkinson’s Disease in 1941. The

> presence of abnormally-folded proteins are associated with the

> depletion of the chemical messenger Dopamine, causing Parkinsonian

> Symptoms.

> *Lewy Body Dementia or Dementia with Lewy Bodies was first described in 1961

> *Not until 1996 did a group of scientists define the diagnostic

> criteria for doctors.

> *Lewy Bodies are abnormal protein deposits that disrupt the brain’s

> normal functioning; they are protein cell bodies

> *Lewy Bodies are found not only in an area of the brain stem, but

> also on the surface of the brain, the Cerebral Cortex. They disrupt

> perception, thinking and behavior

> *Symptoms of Lewy Body vary person to person

> *LBD is often mistaken for Alzheimer’s Disease or Parkinson’s

> Disease or other neurological disorders and often misdiagnosed.

> *There is no sundowning as with AD. Changes in cognitive abilities

> can happen anytime of the day with LBD.

> *Many doctors are still not informed of LBD or Medication

> Sensitivity of LBD. Only 30-50% of LBD cases are accurately

> diagnosed outside of specialty clinics. (Many doctors have not yet

> heard of LBD or have not really become interested and consider it as

> all other dementias, since it was only recently in 1996 that the

> clinical diagnosis was defined for doctors.) A pure determination of

> LBD can only be done through autopsy.

> *Lewy Body Disease covers a Spectrum of LBD/DLB (Lewy Body Dementia)

> or DLB (Dementia with Lewy Bodies)

> *The Spectrum of Lewy Body Disease is:

> 1. Diffuse Lewy Body Disease (DLBD) Spread throughout brain cortex and stem

> 2. Lewy Body Variant of Alzheimer’s (LBV or LBVA)

> 3. Parkinson Disease Dementia (PDD)

> * Parkinson’s Disease (PD) includes Lewy Bodies (Lewy Body Dementia

> Symptoms appear when the dementia exists)

> *DLB - 800,000 patient cases in the U.S.

> *PDD - 750,000 patient cases in the U.S.

> *LBD effects 1.5 million people in the U.S. and effects slightly

> more men than women

> *Lewy Body Disease is not rare, it is estimated to be at least 20%

> of dementia cases in the U.S. alone.

> *It is second most common to Alzheimer’s Disease and Alzheimer’s is

> the most common of dementias

> *LBD doesn’t seem to be genetic in most cases

> *There are different Clinical Presentations of LBD, and different

> Combinations of Symptoms can lead to an LBD diagnosis.

> *(Central Feature) - required for diagnosis

> 1. Dementia

> *(Core Features)

> 1. Fluctuating levels of alertness and Cognition (Termed “Show Time”

> by my support group)

> 2. Recurrent Visual Hallucinations

> 3. Parkinsonian Symptoms

> *(Suggestive Features)

> 1. REM (rapid eye movement) Sleep Behavior Disorder (RBD) physically

> acting out dreams

> 2. Neuroleptic Sensitivity; 50% of those with LBD have severe

> sensitivity to neuroleptics

> 3. Abnormal results on SPECT or PET scans (available only in

> specialty clinics)

> *(Supportive Features) Other common LBD symptoms:

> 1. Repeated Falls, Fainting, Myoclonic (Seizures)

> 2. Auditory Hallucinations, Delusions, Illusions (TV becomes reality

> for example)

> 3. Visuospatial Impairments w/Depth Perception (Shadow looks like a

> deep hole for example) Object/Orientation (On plate poking and

> groping for food, but can’t find it for example)

> 4. Lack of Directional Sense

> 5.Transient/ Unexplained Loss of Consciousness

> 6. Orthostatic Hypotension- Low Blood Pressure (Salt very important with LBD)

> 7. Blood Pressure Fluctuates High and Low

> 8. Difficulty Swallowing, Weak Voice

> 9.Persistent Runny Nose/Drooling

> 10. Progressive Memory Loss

> 11. Changes in Mood, Behavior, Personality

> 12. Decreased Judgment, Loss of Initiative

> 13. Disorientation to Time and Place

> 14. Difficulty w/Language and Tasks ( speaks in the third person

> saying, “he/she” instead of “I” when speaking of themself and may

> not name an object appropriately, says phone for shoe for example)

> (Tasks: can not process how to dial a phone or use a TV remote for

> example)

> 15. Cognitive Symptoms, Level of Alertness Fluctuate from better or

> worse during the day or one day to another.

> 16. Muscle Stiffness and Rigidity

> 17. Very Slow Movements, Frozen Stance

> 18. Balance Difficulties, Shuffling Gait

> 19. Tremors (Resting Tremor Common)

> 20. Stooped Posture (Pronounced Leaning, generally to one side or

> forward. Termed “The Lewy Lean” by my support group)

> 21. RLS - Restless Leg Syndrome

> 22. Blank Facial Expression

> 23. Constipation and Urinary Problems (UTIs are very common w/LBD)

> 24. LBD often recall information better than Alzheimer Patients

> 25. There are no scientifically- defined stages or pattern of

> progression as in AD, but Phases that can occur at different times

> during the progression from other LBDers. (See LBD Phases of

> Progression written by caregivers)

> 26. Lack of Organization and Recall of Information

> 27. Attention Span: Problems on Complex Tasks that require them to

> Maintain or Shift Attention, Problems with Mental Calculation of

> Numbers or Concentration during a task

> 28. Speed of Mental Processing

> 29. Problem Solving or Executive Function

> 30. Altered Consciousness or Awareness, Disorganized Thinking

> *A Probable Clinical Diagnosis for LBD is:

> 1. Dementia Plus two or more Core Features or Dementia Plus one Core

> Feature and one or more Suggestive Features

> *A Possible LBD Clinical Diagnosis is:

> 1. Dementia Plus one Core Feature or Dementia with one or more

> Suggestive Features

> *Common Causes of Delirium:

> 1. Infections such as UTI and Pneumonia

> 2. Imbalance of Sodium, Potassium, Calcium, and/or other

> Electrolytes Balances, Stroke, Heart Disease, Fever, Vitamin B12

> Deficiency, Head Injury, Sensory Changes such as; Hearing Loss and

> Visual Changes

> *Mistakes One Object for Another

> 1. Visual Illusions (Sees Plant as dog for example)

> 2. Capgras Syndrome (Sees Spouse or other Relative/Friend as an

> imposter that looks and acts like them, but is not them)

> *Delusions:

> 1. Fixed thoughts; illogical, irrational and dysfunctional ( House

> is on fire, needs to call fire dept. for example)

> 2. Jealousy; (Partner is Unfaithful for example)

> 3. Persecutory; (Conspired against, Stealing from them)

> *There is no cure or definitive treatment for Lewy Body Disease

> *It usually progresses faster than Alzheimer’s Disease

> *PDD - Parkinson’s Disease Dementia, begins with a long lasting case

> of Parkinsonism (usually no tremors) before the dementia appears

> for an estimated life duration of 5 - 7 years after dementia

> appears or from point of diagnosis depending on several factors

> including; person’s overall health, age and severity of symptoms.

> PDD cases are usually seen around age 60s and up and more rarely in

> age 50s.

> *DLB - Diffuse Lewy Body or Dementia with Lewy Bodies starts with

> dementia first and in one year or less Parkinsonism (usually no

> tremors) shows up or not at all for an estimated life duration of

> 5-7 years from point of diagnosis depending on several factors

> including; person’s overall health, age and severity of symptoms.

> DLB cases are seen as early as age 50s and up and more rarely in age

> 40s

> *It is possible with Lewy Body Disease for life duration to be

> anywhere from 2 - 20 years all depending on the severity of the case.

> *For some people, a very early beginning clue to LBD is REM/RBD

> (Rapid Eye Movement) (Sleep Behavior Disorder)

> *50% of cases with LBD associate with REM sleep disorder

> *REM may be a sign to a neurological problem beginning and is seen

> many years before the actual disease appears.

> *In REM sleep disorder movement is not blocked and people “Act Out”

> their dreams, sometimes vividly and violently.

> *Normal REM sleep, body movement is suppressed and people do not

> “Act Out” their experiences while dreaming

> *With all medications in LBD - Less is Best. Starting low and slow

> in dosing, to regulate sensitivity to the drug.

> *Many drugs and chemical agents can cause delirium with LBD. Such drugs as:

> 1. Anticholinergetics:

> Benedryl

> Zantac

> Ditropan

> 2. Over The Counter Medications:

> No Tylenol PM

> 3. Some Prescribed Antidepressants

> 4. Inhaled Surgical Anesthetics:

> Conscious sedation, spinal block, and local anesthetics are

> preferable substitutes and considered more compatible for LBD.

> 5. Benzodiazepines such as:

> Ativan (Can cause adverse reactions and do the opposite of what is

> intended) Person may never recover from extreme confusion and

> aggressive behaviors from Ativan prescribed and can be fatal.

> Doctors unaware of LBD may prescribe a higher dosage when person

> does not become calmer and the more dosage given the worse the

> reaction gets and can cause fatality as seen by many caregivers that

> believe Ativan caused an early death for their Loved One.

> 6. Antipsychotics or Neuroleptics such as:

> Haldol (Can cause adverse reactions such as; Neuroleptic Malignant

> Syndrome, which can cause the person to be catatonic and is life

> threatening.

> 7. Narcotics:

> Codeine

> Morphine

> 8. Sedatives:

> Clonipin

> *Atypical Antipsychotics such as:

> Seroquel-Quetiapine for example, present best results.

> 1. Diminishes hallucinations and aggressiveness

> Olanzapine and Resperidone should be avoided.

> *Cognition and behavioral symptoms of LBD responds well to

> Cholinesterease Inhibitors such as:

> 1. Aricept

> 2. Exelon

> 3. Razadyne

> *For more continuous updated information on LBD go to: http://www.lbda. org

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