Guest guest Posted September 13, 2008 Report Share Posted September 13, 2008 Hi Jan, This is a wonderful thing you are doing and I just know that you are going to do a wonderful job! Best to you and Jim, Courage Inservice Ok all, finally my day is coming to do the inservice on LBD at my husband's nh. It has been canceled and rescheduled twice. First it was scheduled for the end of August and so many of you wished me well and then it was canceled due to one of the administrators was leaving on vacation for that week and wanted to be at the inservice on LBD, so it was rescheduled to the first week in Sept. and I forgot I had to be back at work that week for the full week and I had to cancel it and now it is scheduled for Sept. 24 and it is for sure there will be no interruptions or cancelations, so I am working on my notes now on what I will present and what I will print to hand out and I will also show parts of the videos on " The Many Faces Of " I only have 45 min. to speak and show, so I am trying to fit it all in. Ok, just wanted you all to know, because I am so excited that they are allowing me to do this and get the word out on LBD. When Jim first arrived at the nh 2 years and 4 months ago, the staff had been through an LBD Conference only the week before, but there has been so much turn over there, that it is time to train them again on LBD. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2008 Report Share Posted September 14, 2008 Jan, So happy this is finally going to happen. I have it marked on my calendar. Good luck!! I know you will do a great job. Dena in SoCal Subject: Inservice To: LBDcaregivers Date: Saturday, September 13, 2008, 1:21 PM Ok all, finally my day is coming to do the inservice on LBD at my husband's nh. It has been canceled and rescheduled twice. First it was scheduled for the end of August and so many of you wished me well and then it was canceled due to one of the administrators was leaving on vacation for that week and wanted to be at the inservice on LBD, so it was rescheduled to the first week in Sept. and I forgot I had to be back at work that week for the full week and I had to cancel it and now it is scheduled for Sept. 24 and it is for sure there will be no interruptions or cancelations, so I am working on my notes now on what I will present and what I will print to hand out and I will also show parts of the videos on " The Many Faces Of " I only have 45 min. to speak and show, so I am trying to fit it all in. Ok, just wanted you all to know, because I am so excited that they are allowing me to do this and get the word out on LBD. When Jim first arrived at the nh 2 years and 4 months ago, the staff had been through an LBD Conference only the week before, but there has been so much turn over there, that it is time to train them again on LBD. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2008 Report Share Posted September 14, 2008 Thanks Dena! Inservice To: LBDcaregivers@ yahoogroups. com Date: Saturday, September 13, 2008, 1:21 PM Ok all, finally my day is coming to do the inservice on LBD at my husband's nh. It has been canceled and rescheduled twice. First it was scheduled for the end of August and so many of you wished me well and then it was canceled due to one of the administrators was leaving on vacation for that week and wanted to be at the inservice on LBD, so it was rescheduled to the first week in Sept. and I forgot I had to be back at work that week for the full week and I had to cancel it and now it is scheduled for Sept. 24 and it is for sure there will be no interruptions or cancelations, so I am working on my notes now on what I will present and what I will print to hand out and I will also show parts of the videos on " The Many Faces Of " I only have 45 min. to speak and show, so I am trying to fit it all in. Ok, just wanted you all to know, because I am so excited that they are allowing me to do this and get the word out on LBD. When Jim first arrived at the nh 2 years and 4 months ago, the staff had been through an LBD Conference only the week before, but there has been so much turn over there, that it is time to train them again on LBD. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2008 Report Share Posted September 18, 2008 Janet, your unbelievably detailed response was magnificent. Thank you for this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2008 Report Share Posted September 19, 2008 Jan, this is superb. I have already sent a copy to Don's daughter who is a nurse. I put your name on it, so that you get credit for a job well done. How large was the group you spoke to? Were you nervous? I'll bet you did a fantastic job. Were there any questions afterwards? Did they want literature? I am so proud of you, Jan. It is wonderful that you could educate the NH staff. Love all the way around and back again, Imogene In a message dated 9/19/2008 5:25:37 PM Central Daylight Time, janetcolello@... writes: 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 **************Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators. (http://www.walletpop.com/?NCID=emlcntuswall00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2008 Report Share Posted September 19, 2008 Quoting Janet Colello : 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 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2008 Report Share Posted September 20, 2008 Jan, Have you thought to ask the LBDa for the DVD's so each can have theirs? I know Carol brought us each one at the CGs meeting. I am sure they would send them out. Hugs, Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02. No dx other than mine. Re: Inservice Hi Imogene, I haven't done the Inservice yet on LBD at the nursing home, it is scheduled for Sept. 24 at 2PM. I had asked this group�earlier for people to edit my Inservice outline and give me any feedback on it. I also sent it to the LBDA to critique it and they edited very little of it and sent it back for me to make some corrections and so I sent the finished product of my Inservice Outline that I will use on my Presentation on Wednesday to this group, because some had mentioned that they had copied my first outline and I want to make sure they have the one with all the facts straight and that has been edited by the LBDA. I am not really all that good at getting up in front of an audience, but the staff at the nh are like family to me now and I don't think I will have a problem with it. I joke around with them and feel comfortable with them including the administration staff, they all know me there. I practically live there myself. LOL I will let you all know how it went after Wednesday's Presentation. I'm also passing out documents from Dr. Lippa and Boeve�and the LBD brochure plus�other LBD information�from the Links/Files. I am showing some parts of " The Many Faces of Lewy Body " DVDs I and II. So they will get plenty of information. They will also have the website for the LBDA to keep informed of the latest LBD information. Thank you for your support Imogene, I really appreciate it. I hope Don's daughter shares the information and that the DON doesn't act like she knows it all and throws it in the trash. I found that after all the papers and brochures of LBD that I have handed out every year at the nursing home during my " Residential Plan Meetings " have� not even been distributed around or discussed and I could see that they do not know anything about LBD, especially the CNAs that work the most with the people. I don't know if the admin. staff will share the information that they learn from me on Wednesday with the CNAs, they just don't seem to communicate with them. They have no clue how to communicate with Jim, so he can process what they are saying to keep the frustrations down. Sometimes Visual Aid works better than reading or word of mouth, so I hope this will get some of the people to understand LBD around there. Hope you are well, Love-a-bunch..................Jan Re: Inservice Jan, this is superb. I have already sent a copy to Don's daughter who is a nurse. I put your name on it, so that you get credit for a job well done. How large was the group you spoke to? Were you nervous? I'll bet you did a fantastic job. Were there any questions afterwards? Did they want literature? I am so proud of you, Jan. It is wonderful that you could educate the NH staff. Love all the way around and back again, Imogene In a message dated 9/19/2008 5:25:37 PM Central Daylight Time, janetcolello@ yahoo.com writes: 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 ************ **Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators. (http://www.walletpo p.com/?NCID= emlcntuswall0000 0001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2008 Report Share Posted September 25, 2008 Well done Jan! I'm sure you educated more than you realize. I wonder how long it will be before turnover of staff means another inservice! The staff surely should feel closer to Jim now, more understanding and appreciative of what he can accomplish. Kudos! > > Just to let you all know the inservice I did at Jim's nursing home on LBD was a success. I was very relaxed and got everything in that I had planned and I made it right up to 43 min. with the presentation and I was given 45 min. for the presentation, so I had 2 min. to spare. LOL The staff was very interested in the Spectrum of LBD and were lead to believe that Diffuse Lewy Body was the only type of Lewy Body Dementia and they were not aware that PDD, Parkinson's Disease Dementia, was also considered Lewy Body Dementia and they were taking notes on the Spectrum of Lewy Body Disease. When I was talking about all the supporting features of LBD, they all recognized a majority of those features in Jim. Many that sit with Jim during meal times at breakfast and lunch have approached me to let me know that they have noticed that often Jim is self-feeding and at other times, he can't find the food on his plate, so they were very interested to hear about the > Visuospatial impairments w/depth perception and in object/orientation. They thought Jim was getting more needy in feeding, but they did recall that he can feed himself most of the time and other times he can't and they thought he was just relying more and more on them to feed him and they were trying to initiate for him to feed himself when he really couldn't determine where the food was on his plate, so now they are aware of why this situation is happening and will be there for him when he can not find his food on the plate. They got a laugh out of Capgras Syndrome and of course, they have never heard of such a thing. They know that Jim recognizes me and knows me and they are aware that he recognizes most all of them and they were amazed, because they thought he had Alzheimers. I told them the story about Jim having a " Capgras moment " when he lived at home and asked me at dinner time where I eat and I said, " I eat with you, we eat together at the > table. " And Jim blushed and said, " Oh no! Not both my wives together. " That told it all about Capgras. LOL Hearing about Lewy Body kept them all amused and they all felt a little closer to Jim when they walked out of the meeting with a new sense of his disease. > Thank you for all your support and supportive prayers, they really helped. I didn't feel nervous at all and I had a real good feeling after it was all over that they all know about Lewy Body now and they also got print-outs of a lot of information that I passed out, besides the Inservice Outline that I posted to all of you and thank you for critiquing it, so I could edit it and get all the information correct. They all thanked me as they walked out and there were 20 staff members from office admin and nursing together. > For those of you that know Jim and Helen Whitworth that now work in the volunteer end doing presentations on LBD and travel doing it, they will be in a town very close to where I live in California on Saturday and I plan on visiting with them and seeing their presentation. I may get into that end of volunteering when I have free time in my life. Just a thought, the nursing home is like family to me now, so they were easy to present to. I'm not sure how I would do with an audience full of strangers. I will have to see how the real professionals handle it on Saturday. I think Jim and Helen live in the state of Washington now. I am not 100% sure. They are doing a presentation in Oregon this week and then coming down the coast to California on Saturday. I have met Jim and Helen a few times before, so it will be fun to see them again. Jim was the very first person I had ever met from this site when he was on this site and then he started working on the > LBDA board. He used to live in California not far from where I live. As with Sandie and , Jim and Helen met from this group site also after Jim's and Helen's spouses were deceased. So, we are not only a support group, we are match makers too. LOL > Jan Colello > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 Kat, Go for it! You can do it and it will be welcome, I am sure. Hugs, Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02. No dx other than mine. Re: Inservice Hi Jan, You are motivating me to do this at my Mom's daycare.� One of the supervisor's has been in caregiving for 18 yrs in nursing homes, etc...� She has never heard of LBD.� The Owner and Director of the daycare coincidentally attended some sort of seminar right before I told them of my Mom's dx.� I think it knowledge is power. Job well done. Kat in IL, caregiver to Mom, Jane, 86, brainstem stroke survivor 2/06, dx LBD 3/08 Inservice Just to let you all know the inservice I did at�Jim's nursing home on LBD was a success. I was very relaxed and got everything in that I had planned�and I made it right up�to 43 min. with the presentation� and I was given 45 min. for the presentation, so I had 2 min. to spare. LOL The staff was very interested in the Spectrum of LBD and were lead to believe that Diffuse Lewy Body was the only type of Lewy Body Dementia and they were not aware that PDD, Parkinson's Disease Dementia, was also considered Lewy Body Dementia and they were taking notes on the Spectrum of Lewy Body Disease. When I was talking about all the supporting features of LBD, they all recognized a majority of those features in Jim. Many that sit with Jim during meal times at breakfast and lunch have approached me to let me know that they have noticed that often Jim is self-feeding and at other times, he can't find the food on his plate, so they were very interested to hear about the Visuospatial impairments w/depth perception and in object/orientation. They thought Jim was getting more needy in feeding, but they did recall that he can feed� himself most of the time and other times he can't and they thought he was just relying more and more�on them to feed him and they were trying to initiate for him to feed himself when he really couldn't determine where the food was on his plate, so now they are aware of why this situation is happening and will be there for him when he can not find his food on the plate. They got�a laugh out of Capgras Syndrome and of course, they have never heard of such a thing. They know that Jim recognizes me and knows me and they are aware that he recognizes most all of them and they were amazed, because they thought he had Alzheimers. I told them the story about Jim having a " Capgras moment " when he lived at home and asked me at dinner time�where I eat and I said, " I eat with you, we eat together at the table. " And Jim blushed and said, " Oh no! Not both my wives together. " That told it all about Capgras. LOL Hearing about Lewy Body kept them all amused and they all felt a little closer to Jim when they walked out of the meeting with a new sense of his disease. Thank you for all your support and supportive prayers, they really helped. I didn't feel nervous at all and I had a real good feeling after it was all over that they all know about Lewy Body now and they also got print-outs of a lot of information that I passed out, besides the Inservice Outline that I posted to all of you and thank you for critiquing it, so I could edit it and get all the information correct. They all thanked me as they walked out and there were 20 staff members from office�admin and nursing together. For those of you that know Jim and Helen Whitworth that now work in the volunteer end doing presentations on LBD and travel doing it, they will be in a town very close to where I live in California�on Saturday and I plan on visiting with them and seeing their presentation. I may get into that end of volunteering when I have free time in my life. Just a thought, the nursing home is like family to me now, so they were easy to present to. I'm not sure how I would do with an audience full�of strangers. I will have to see how the real professionals handle it on Saturday. I think Jim and Helen live in the state of Washington now. I am not 100% sure. They are doing a presentation in Oregon this week and then coming down the coast to California on Saturday. I have met Jim and Helen a few times before, so it will be fun to see them again. Jim was the very first person I had ever met from this�site when he was on this site and then he started working on the LBDA board. He used to live in California not far from where I live. As with Sandie and , Jim and Helen met from this group site also after Jim's and Helen's spouses were deceased. So, we are not only a support group, we are match makers too. LOL Jan Colello Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 You go for it girl! If I can do it you can do it. When Jim first moved into the nursing home, the admin. staff had only a week before attended a Symposium on Lewy Body and I felt fortunate that they knew about it, they were Lewy Savvy. It is now 2 years and 4 months later and the admin staff and nursing staff have all turned over at least twice. It is now the third DON (Director Of Nursing) since Jim moved in, not to mention the number of office staff and nursing staff that have turned over too. It was time to give them a lesson in Lewy Body as all these new people didn't have a clue about it and I'd mention it to them at all the " Residential Plan Meetings " and give them print-out after print-out on Lewy Body. I have no idea where all the information goes that I pass out, but I have an idea it goes into the trash, since after all the information I pass out doesn't seem to get spread around. I think I left more of an impression on them with the presentation than all the print-outs I've handed out around there. I am sure some were even talking about it today with coworkers during feeding times with Jim about the Visuospatial Impairment, now that they are aware of it. Kat, I hope I have motivated you to do an LBD presentation at your mom's Daycare Program. Spread the Word! If we can reach a few people, they might spread the word to a few others and so on. Jan * When I do an acronym like; DON I put in ( the actual name) for any new people that may not know what an acronym stands for. It confused me a lot when I was new here. I didn't know what UTI (Urinary Tract Infection) stood for. I sure do now! I was always asking what certain acronyms stood for. I had no clue and a lot of people use them here. Inservice Just to let you all know the inservice I did at Jim's nursing home on LBD was a success. I was very relaxed and got everything in that I had planned and I made it right up to 43 min. with the presentation and I was given 45 min. for the presentation, so I had 2 min. to spare. LOL The staff was very interested in the Spectrum of LBD and were lead to believe that Diffuse Lewy Body was the only type of Lewy Body Dementia and they were not aware that PDD, Parkinson's Disease Dementia, was also considered Lewy Body Dementia and they were taking notes on the Spectrum of Lewy Body Disease. When I was talking about all the supporting features of LBD, they all recognized a majority of those features in Jim. Many that sit with Jim during meal times at breakfast and lunch have approached me to let me know that they have noticed that often Jim is self-feeding and at other times, he can't find the food on his plate, so they were very interested to hear about the Visuospatial impairments w/depth perception and in object/orientation. They thought Jim was getting more needy in feeding, but they did recall that he can feed himself most of the time and other times he can't and they thought he was just relying more and more on them to feed him and they were trying to initiate for him to feed himself when he really couldn't determine where the food was on his plate, so now they are aware of why this situation is happening and will be there for him when he can not find his food on the plate. They got a laugh out of Capgras Syndrome and of course, they have never heard of such a thing. They know that Jim recognizes me and knows me and they are aware that he recognizes most all of them and they were amazed, because they thought he had Alzheimers. I told them the story about Jim having a " Capgras moment " when he lived at home and asked me at dinner time where I eat and I said, " I eat with you, we eat together at the table. " And Jim blushed and said, " Oh no! Not both my wives together. " That told it all about Capgras. LOL Hearing about Lewy Body kept them all amused and they all felt a little closer to Jim when they walked out of the meeting with a new sense of his disease. Thank you for all your support and supportive prayers, they really helped. I didn't feel nervous at all and I had a real good feeling after it was all over that they all know about Lewy Body now and they also got print-outs of a lot of information that I passed out, besides the Inservice Outline that I posted to all of you and thank you for critiquing it, so I could edit it and get all the information correct. They all thanked me as they walked out and there were 20 staff members from office admin and nursing together. For those of you that know Jim and Helen Whitworth that now work in the volunteer end doing presentations on LBD and travel doing it, they will be in a town very close to where I live in California on Saturday and I plan on visiting with them and seeing their presentation. I may get into that end of volunteering when I have free time in my life. Just a thought, the nursing home is like family to me now, so they were easy to present to. I'm not sure how I would do with an audience full of strangers. I will have to see how the real professionals handle it on Saturday. I think Jim and Helen live in the state of Washington now. I am not 100% sure. They are doing a presentation in Oregon this week and then coming down the coast to California on Saturday. I have met Jim and Helen a few times before, so it will be fun to see them again. Jim was the very first person I had ever met from this site when he was on this site and then he started working on the LBDA board. He used to live in California not far from where I live. As with Sandie and , Jim and Helen met from this group site also after Jim's and Helen's spouses were deceased. So, we are not only a support group, we are match makers too. LOL Jan Colello Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 You go for it girl! If I can do it you can do it. When Jim first moved into the nursing home, the admin. staff had only a week before attended a Symposium on Lewy Body and I felt fortunate that they knew about it, they were Lewy Savvy. It is now 2 years and 4 months later and the admin staff and nursing staff have all turned over at least twice. It is now the third DON (Director Of Nursing) since Jim moved in, not to mention the number of office staff and nursing staff that have turned over too. It was time to give them a lesson in Lewy Body as all these new people didn't have a clue about it and I'd mention it to them at all the " Residential Plan Meetings " and give them print-out after print-out on Lewy Body. I have no idea where all the information goes that I pass out, but I have an idea it goes into the trash, since after all the information I pass out doesn't seem to get spread around. I think I left more of an impression on them with the presentation than all the print-outs I've handed out around there. I am sure some were even talking about it today with coworkers during feeding times with Jim about the Visuospatial Impairment, now that they are aware of it. Kat, I hope I have motivated you to do an LBD presentation at your mom's Daycare Program. Spread the Word! If we can reach a few people, they might spread the word to a few others and so on. Jan * When I do an acronym like; DON I put in ( the actual name) for any new people that may not know what an acronym stands for. It confused me a lot when I was new here. I didn't know what UTI (Urinary Tract Infection) stood for. I sure do now! I was always asking what certain acronyms stood for. I had no clue and a lot of people use them here. Inservice Just to let you all know the inservice I did at Jim's nursing home on LBD was a success. I was very relaxed and got everything in that I had planned and I made it right up to 43 min. with the presentation and I was given 45 min. for the presentation, so I had 2 min. to spare. LOL The staff was very interested in the Spectrum of LBD and were lead to believe that Diffuse Lewy Body was the only type of Lewy Body Dementia and they were not aware that PDD, Parkinson's Disease Dementia, was also considered Lewy Body Dementia and they were taking notes on the Spectrum of Lewy Body Disease. When I was talking about all the supporting features of LBD, they all recognized a majority of those features in Jim. Many that sit with Jim during meal times at breakfast and lunch have approached me to let me know that they have noticed that often Jim is self-feeding and at other times, he can't find the food on his plate, so they were very interested to hear about the Visuospatial impairments w/depth perception and in object/orientation. They thought Jim was getting more needy in feeding, but they did recall that he can feed himself most of the time and other times he can't and they thought he was just relying more and more on them to feed him and they were trying to initiate for him to feed himself when he really couldn't determine where the food was on his plate, so now they are aware of why this situation is happening and will be there for him when he can not find his food on the plate. They got a laugh out of Capgras Syndrome and of course, they have never heard of such a thing. They know that Jim recognizes me and knows me and they are aware that he recognizes most all of them and they were amazed, because they thought he had Alzheimers. I told them the story about Jim having a " Capgras moment " when he lived at home and asked me at dinner time where I eat and I said, " I eat with you, we eat together at the table. " And Jim blushed and said, " Oh no! Not both my wives together. " That told it all about Capgras. LOL Hearing about Lewy Body kept them all amused and they all felt a little closer to Jim when they walked out of the meeting with a new sense of his disease. Thank you for all your support and supportive prayers, they really helped. I didn't feel nervous at all and I had a real good feeling after it was all over that they all know about Lewy Body now and they also got print-outs of a lot of information that I passed out, besides the Inservice Outline that I posted to all of you and thank you for critiquing it, so I could edit it and get all the information correct. They all thanked me as they walked out and there were 20 staff members from office admin and nursing together. For those of you that know Jim and Helen Whitworth that now work in the volunteer end doing presentations on LBD and travel doing it, they will be in a town very close to where I live in California on Saturday and I plan on visiting with them and seeing their presentation. I may get into that end of volunteering when I have free time in my life. Just a thought, the nursing home is like family to me now, so they were easy to present to. I'm not sure how I would do with an audience full of strangers. I will have to see how the real professionals handle it on Saturday. I think Jim and Helen live in the state of Washington now. I am not 100% sure. They are doing a presentation in Oregon this week and then coming down the coast to California on Saturday. I have met Jim and Helen a few times before, so it will be fun to see them again. Jim was the very first person I had ever met from this site when he was on this site and then he started working on the LBDA board. He used to live in California not far from where I live. As with Sandie and , Jim and Helen met from this group site also after Jim's and Helen's spouses were deceased. So, we are not only a support group, we are match makers too. LOL Jan Colello Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 Jan, Congrats on the successful presentation. I knew you could do it! Courage Inservice Just to let you all know the inservice I did at Jim's nursing home on LBD was a success. I was very relaxed and got everything in that I had planned and I made it right up to 43 min. with the presentation and I was given 45 min. for the presentation, so I had 2 min. to spare. LOL The staff was very interested in the Spectrum of LBD and were lead to believe that Diffuse Lewy Body was the only type of Lewy Body Dementia and they were not aware that PDD, Parkinson's Disease Dementia, was also considered Lewy Body Dementia and they were taking notes on the Spectrum of Lewy Body Disease. When I was talking about all the supporting features of LBD, they all recognized a majority of those features in Jim. Many that sit with Jim during meal times at breakfast and lunch have approached me to let me know that they have noticed that often Jim is self-feeding and at other times, he can't find the food on his plate, so they were very interested to hear about the Visuospatial impairments w/depth perception and in object/orientation. They thought Jim was getting more needy in feeding, but they did recall that he can feed himself most of the time and other times he can't and they thought he was just relying more and more on them to feed him and they were trying to initiate for him to feed himself when he really couldn't determine where the food was on his plate, so now they are aware of why this situation is happening and will be there for him when he can not find his food on the plate. They got a laugh out of Capgras Syndrome and of course, they have never heard of such a thing. They know that Jim recognizes me and knows me and they are aware that he recognizes most all of them and they were amazed, because they thought he had Alzheimers. I told them the story about Jim having a " Capgras moment " when he lived at home and asked me at dinner time where I eat and I said, " I eat with you, we eat together at the table. " And Jim blushed and said, " Oh no! Not both my wives together. " That told it all about Capgras. LOL Hearing about Lewy Body kept them all amused and they all felt a little closer to Jim when they walked out of the meeting with a new sense of his disease. Thank you for all your support and supportive prayers, they really helped. I didn't feel nervous at all and I had a real good feeling after it was all over that they all know about Lewy Body now and they also got print-outs of a lot of information that I passed out, besides the Inservice Outline that I posted to all of you and thank you for critiquing it, so I could edit it and get all the information correct. They all thanked me as they walked out and there were 20 staff members from office admin and nursing together. For those of you that know Jim and Helen Whitworth that now work in the volunteer end doing presentations on LBD and travel doing it, they will be in a town very close to where I live in California on Saturday and I plan on visiting with them and seeing their presentation. I may get into that end of volunteering when I have free time in my life. Just a thought, the nursing home is like family to me now, so they were easy to present to. I'm not sure how I would do with an audience full of strangers. I will have to see how the real professionals handle it on Saturday. I think Jim and Helen live in the state of Washington now. I am not 100% sure. They are doing a presentation in Oregon this week and then coming down the coast to California on Saturday. I have met Jim and Helen a few times before, so it will be fun to see them again. Jim was the very first person I had ever met from this site when he was on this site and then he started working on the LBDA board. He used to live in California not far from where I live. As with Sandie and , Jim and Helen met from this group site also after Jim's and Helen's spouses were deceased. So, we are not only a support group, we are match makers too. LOL Jan Colello Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.