Guest guest Posted December 3, 2011 Report Share Posted December 3, 2011 Hi Judy, Judy stated: My mother has been in the " late stages " for app a year - and we can't imagine things getting much worse. She is fully incontinent - can no longer walk , cannot talk and doesn't recognize us, her family ! I'm wondering if u would share how long your husband was in this stage for and how he passed ?   As it is known here, not all LO's get the same symptoms, but similar, and not always in the same Phase of LBD. " Phase " is used more often in LBD than " Stage, " as LBD does not seem to follow stages as Alzheimers does, but more of a Phase. (Scroll to bottom) As Robin has stated until there is an autopsy after death, if decided on, we really don't have a factual answer to if our LO is suffering from PDD/DLB. My husband had a clinical diagnosis from his neurologist. He had way before in his healthy years, even before Parkinsonism set in, donated his remains to UCSF, University California San Francisco. So, he was not allowed to donate his brain or to have anything removed after death. Since he had signed papers and decided this before I even knew him, I could not change his decision. I can only hope that the study of his remains at the University could bring about some answers.  Jan's answers : I guess my husband became incontinent about 7 years before he died when he could no longer recognize a toilet and would void anywhere, but the toilet. He was still able to walk with a walker to the toilet, if he could recognize it, but he could not recoginze it. If I got him to a toilet on time he would void in the toilet.  Although Jim walked with a walker, he did not use the walker appropriately, and needed me at his side to steady him. He would be in a hurry and his feet would stick to the floor like they were stuck with glue and he couldn't get them moving called, " Festination, " a well known Parkinson's gait. Also, the walker would get way ahead of him, he never could keep it directly in front of him, sometimes it got in his way to move quickly, as he seemed always in a hurry, and he would lift the walker or drag it behind him to get it out of his way, so it was more of a danger than a help, and I always had to be at his side when he used it. Six years before he died, he went into a nursing home and the PT (Therapist) recommended for him to be in a wheelchair for safety at the nursing home and he lost the ability to use his legs. He was combative when the therapist attempted to walk him, so they did not deal with him. I made sure that he kept his weight bearing, by me exercising his legs while he was on the bed and by also having him reach for the wall railing while he sat in his wheelchair and pull himself up to a stand. Sometimes I had to grab him by the seat of his pants and help him to pull up, but he did most of the work of pulling up to stand. When I was there, because of his weight bearing, I could get him to the toilet and position him over the toilet to sit and void. The nurses were not always able to change him every two hours, but they made good attempts. Many people needed their attention. I spent 8-10 hours at the nusing home with my husband everyday to advocate for him and help him, except for major holidays like; Thanksgiving, Christmas....... when I had to be with my family. I became the only person that could understand my husband, he did not talk or carry on conversations and talked in a very low whisper when he said anything. I had to speak to him slowly in two or three word sentences, so he could process what I was saying. Most everyone spoke way too fast for him to process what they were saying and he stopped talking altogether with them. I was with him everyday for that purpose also, so I wouldn't lose what he was trying to say or tell me. It is like a mother with a baby, you begin to learn their body language and their cries for what their needs are. Anyway, it worked for us and it doesn't always work for everyone. I desperately tried to keep that contact with him, so I could convey his needs to the nursing staff. He did not recognize his own kids, (adults). They didn't visit him too often. They were not our children together, they were from another marriage. Jim had been divorced for several years before I met him. Jim had Capgras Syndrome and knew it was me, but I was an imposter of me at times. So, he was always testing me to find out if it was me. One time he asked if I knew where the treasure was hidden and if I did, he would know it was me. I had no clue to where any treasure was hidden and so I started guessing and I failed miserably. He pulled his cheap watch out of his pocket and said here it is. WHO KNEW?! LOL I was not allowed in the bathroom to help him since I was not me! Most of the time, he knew me, even up to when he died. He said, " Bah " to me..... " Bye. " He was so weak, I don't know how he got the energy to manage to get that sound out. He died of complications of Aspiration Pneumonia and a UTI and refused to eat the last 5 days of his life. He was all bone and very weak. He had it in his Directive he did not want any life supports or IVs of antibiotics if he stopped eating or taking pills, so they could not give him antibiotics. The doctor and the family followed his wishes at the end. Hospice was also there. Altogether with Parkinsonism at the beginning and dementia following in 2000, it was about a 15/16 year journey. 10 years with dementia. Jim died at the beginning of what would have been the 11th year following dementia, but the neurologist had not heard of LBD in 2000 and Jim was not clinically diagnosed until Oct. 2003. It was not until 1996 that a group of scientists defined the diagnostic criteria for doctors. So the information was slowly getting out to the medical community.   Below is in answer to Phases not Stages in LBD: This was done by women in our support group and found in our Links Files in Yahoo Groups LBDcaregivers http://health.groups.yahoo.com/group/LBDcaregivers/files/LBD%20Phases/  LBD APPROXIMATE PHASES AS SEEN BY CARING SPOUSES June 2007  Facilitated by Sue of West Virginia, edited by June Christensen, Kansas Please be aware that the following piece is based on the discussions and observations of the LBD caring spouses. It is in no way based on research or science and is not intended to represent research or science. It is developed to assist newly diagnosed families with a framework to refer to. As one retired spouse has said, " To be forewarned is to be forearmed. " The phases have no specific time frame. Due to the fluctuations of the disease, the phases are not linear. Instead, phases tend to " ebb and flow " or subtly appear. Symptoms noted in an early phase may be present for the course of the disease. These symptoms may increase in frequency or severity over time. In addition, patients that are " high-functioning " may also show symptoms of Phase III or IV.  By no means will a patient display all the symptoms listed in any specific phase.  Therefore, each phase is described with " possible " symptoms. GLOSSARY OF ACRONYMS ADL Activities of Daily Living - dressing/bathing/ feeding oneself BP Blood Pressure CG Caregiver DME Durable Medical Equipment--wheel chair, shower chair DPOA Durable Power of Attorney LBD Lewy Body Dementia LO Loved One LW Living Will MPOA Medical Power of Attorney PCP Primary Care Physician POA Power of Attorney REM Rapid Eye Movement sleep disorder URI Upper Respiratory Infection UTI Urinary Tract Infection WCh Wheelchair  PHASE I POSSIBILITIES Most caregivers are concerned/worried that something is not right. Please note that symptoms from later stages can appear at this early phase. At the end of this phase, dementia is becoming difficult to deny *Possible REM sleep disorder; Restless Leg Syndrome; Hallucinations; possible Parkinson’s disease diagnosis, Myoclonus (involuntary jerking) *Increased daytime sleep - two+ hours *Loss of sense of smell (Anosmia); vision problems; hearing loss; speech problems *Impaired physical coordination (ataxia); shuffling gait; slowness of movement; altered posture (called Lewy Lean) *Chronic runny nose *Impaired comprehension and cognition; inability to learn new tasks; loss of initiative and interests; diminished alertness *Short-term memory loss but able to hide (mask) symptoms or engage in show time *Mood: Fluctuations; depressed/anxious; paranoia; may accuse spouse of infidelity, aggression *Able to engage independently in leisure activities *Handwriting is affected; impaired ability to handle financial responsibilities *Still may be able to work but driving skills often compromised  PHASE II POSSIBILITIES Most caregivers are worried that something is wrong and seek medical attention. May be given an incorrect diagnosis (Alzheimer’s, Multisystem atrophy, Multi-Infarct Dementia, Depression, Parkinson’s). Please note that symptoms from later or earlier stages can appear at this phase. It is strongly suggested that caregivers consult with an elder law attorney at this phase. At least, have a Power of Attorney and Medical Power of Attorney document on the patient. Family, friends, caregivers may successfully take financial advantage of LO. Caregivers need to familiarize themselves with all finances and assets to possibly consult with a financial advisor. *Ambulates/transfers without assistance but increased risk for falls/requires walker; leaning to one side (Lewy Lean); possible fainting; able to perform most ADLs without assistance *Some autonomic dysfunction (changes in BP, sweating, fainting, dry mouth), occasional episodes of incontinence (one or two a month), constipation *Parkinson’s symptoms may be controlled with medication *Increased difficulty in: Finding words (aphasia); organizing thoughts; reading & comprehension; following TV programs; operating home appliances *May be able to administer own medications. *Able to follow content of most conversations *Able to be left unsupervised for two or more hours *Delusions; Capgras Syndrome (seeing or thinking that a person or objects have been replaced by another identical one); may be more depressed; more paranoid and more agitated  PHASE III POSSIBILITIES Most caregivers have the correct diagnosis. Caregiver and patient actively grieve. Caregivers need regular planned respite. Caregiver needs require regular preventive health care. Caregivers may need home health aide assistance to maintain LO in the home. Patient is at risk for long-term care due to: psychological symptoms, personal safety risk, and caregiver safety risk. The needs of the patient affect personal finances. Please note that symptoms from later or earlier stages can appear at this phase. *Ambulation/transfers are impaired, needs assistance with some portion of movement *At risk for falls; increase of Parkinsonism symptoms *Increase of autonomic dysfunctions; frequent episodes of incontinence (two+ per week) *Needs assistance/supervision with most ADLs; may require DME *Speech becomes impaired, projection (volume) may decrease *Able to follow content of most simple/brief conversations or simple commands; increased difficulty with expressive language *Able to be left unsupervised less than one hour but unable to work or drive *Unable to administer medication without supervision *Unable to organize or participate in leisure activities *Inability to tell time or comprehend time passing *Mood fluctuations (depressed, paranoid, anxious, angry) requiring medical monitoring; increased confusion; delusions; and increased Capgras Syndrome *Severity of symptoms may increase or decrease  PHASE IV POSSIBILITIES Caregiver at high risk for chronic health/joint problems. Self-care is paramount to providing patient care. The needs of the patient require the assistance of a home-health aide/private-duty aide two-to-seven days per week. Increased patient needs may require potential for long-term care placement. Patient may be declared mentally incapacitated. Caregiver may need to explore Hospice services. *Needs continuous assistance with ambulation/transfers; high risk for falls; may need electronic lift recliner chair *Needs assistance with all ADLs; requires 24-hour supervision *Autonomic dysfunctions need regular medical monitoring; incontinent of bladder and bowel *Unable to follow content of most simple/brief conversations or commands; speech limited to simple sentences or one-to-three-word responses *Parkinson’s symptoms need regular medical monitoring *Choking, difficulty swallowing (dysphasia), aspiration, excessive drooling *Increased daytime sleeping *Hallucinations prevalent but less troublesome  PHASE V POSSIBILITIES Caregiver is actively grieving. Potential for increased caregiver stress. Hospice assistance is strongly suggested. Caregiver will need hands-on support from others to maintain LO at home. Caregiver may need to honor decisions made earlier on the Living Will. *Dependent for all ADLs; patient may require hospital bed, Hoyer lift or Mo-lift, suction machine, etc.); and assistance with repositioning *High risk for URI, pneumonia, and UTI ; skin breakdown; and may have a fever *Difficulty swallowing with possible decision for feeding tube necessary *Muscle contractions - hands, legs, arms; lean to either side very pronounced *May need nutritional supplements - Ensure/Boost/ Carnation Instant Breakfast *Unable to follow simple commands; decreased or no language skills *Constant delusions *Fluctuations less frequent and more severe   June 30, 2007  ________________________________ Hi Jan - You sound like a true expert on the comparison between PDD and LBD - and similarities ! Your husband sounds much like my mom in regard to his symptoms and and the parkinsons showing up first and then the dementia ! My mother has been in the " late stages " for app a year - and we can't imagine things getting much worse. She is fully incontinent - can no longer walk , cannot talk and doesn't recognize us, her family ! I'm wondering if u would share how long your husband was in this stage for and how he passed ? Thank you ! Judy R. Strauss LMSW PhD Lead Faculty University of Phoenix Jersey City Campus 100 Town Square Place |Jersey City, NJ 07310 Cell-  Email- Jrstr@...  > > > Hi Tania, > My husband also had PDD, as most have explained, it is in the same spectrum as LBD. Instead of Lewy Body Dementia, LBD is also an acronym for Lewy Body Disease, because both Lewy Body Dementia and PDD have Lewy Bodies. The Protein Cell Bodies on the brain exist in both diseases and are named after a Dr. Lewy. I attended the first conference on PDD vs. DLB in Washington DC, and it was determined by the research doctors that both were within the spectrum of LBD. PDD typically starts out with a Parkinsonism for several years and develops dementia later. DLB or Dementia with Lewy Bodies (LBD) starts out with dementia and sometimes is found in earlier ages with early onset dementia, they may or may not get parkinsonism, but if they do it follows within a year or a short time after the dementia. > My husband died nearly a year ago in January. He started out with a Parkinsonism, not a true Parkinson's, but had mostly the Parkinson's gait and falling a lot. He had it 5 to 6 years before the dementia appeared full blown in 2000. He did have mild hallucinations, mostly of bugs and people in the room, and also delusions; plus he had Capgras pronounched: (Cap Grah) like the ending of Mardigras is pronounced. Not everyone follows the same order of symptoms, but they all are very similar. > Jan Colello, East Bay, San Francisco Bay Area > Husband, Jim Colello, dx w/ PDD/LBD Oct. 2003 > Deceased, January, 2011 > > > ________________________________ > > To: LBDcaregivers > Sent: Thursday, December 1, 2011 3:37 AM > Subject: Different day, different diagnosis > > We took Dad (dx Parkinson's in 2010, then LBD early 2011) to Sydney > today to see a new neurologist today. This is her: > http://www.mq.edu.au/about_us/faculties_and_departments/faculty_of_human\ > _sciences/asam/our_staff/dr_carolyn_f_orr/. For the record, she seems to > be an incredible mind and was so thoughtful regarding Dad's condition > and feelings. I had forewarned her that his last neuro made some > negative comments that had impacted greatly on Dad's depression. > > We hadn't been happy that since refusing to give Dad any more Seroquel > after two days of hell, a couple of months ago, his previous neuro now > had him on no meds for LBD at all aside from a tiny dose of Sinemet. We > were hoping Dr Orr (the new neuro) may be able to offer some clarity and > possibly a better quality of life as Dad's mood had taken a serious turn > for the worse. > > To cut a long story (and 1.5 hour consultation) short, Dr Orr said that > Dad does not have LBD. She has instead diagnosed him with PDD > (Parkinson's Disease Dementia). She said the tell-tale sign was the fact > that Dad had an onset of Parkinson's-related symptoms years before any > cognitive decline - something she said just doesn't happen with LBD as > it's usually the other way around (ie. cognitive decline, with later > Parkinsonian symptoms). I was always suspicious of Dad's diagnosis of > LBD as everyone always mentioned hallucinations which Dad didn't really > have. > > I recall someone on here recently saying that a diagnosis of PDD was > almost always later confirmed as LBD. But from what I have now > researched, as well as what we were told today, it seems highly unlikely > that Dad does have LBD. > > I'm wondering if anyone has had any similar experiences? This is the > third diagnosis in less than 2 years. We absolutely trust the woman we > saw today and everything she's told us makes sense but the comments of > someone on here recently keep replaying in my mind. > > Thanks, Tania. > > ------------------------------------ > > Welcome to LBDcaregivers. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2011 Report Share Posted December 3, 2011 ________________________________ To: " LBDcaregivers " <LBDcaregivers > Sent: Saturday, December 3, 2011 1:19 PM Subject: Re: ? For Judy Hi Judy, Judy stated: My mother has been in the " late stages " for app a year - and we can't imagine things getting much worse. She is fully incontinent - can no longer walk , cannot talk and doesn't recognize us, her family ! I'm wondering if u would share how long your husband was in this stage for and how he passed ?   As it is known here, not all LO's get the same symptoms, but similar, and not always in the same Phase of LBD. " Phase " is used more often in LBD than " Stage, " as LBD does not seem to follow stages as Alzheimers does, but more of a Phase. (Scroll to bottom) As Robin has stated until there is an autopsy after death, if decided on, we really don't have a factual answer to if our LO is suffering from PDD/DLB. My husband had a clinical diagnosis from his neurologist. He had way before in his healthy years, even before Parkinsonism set in, donated his remains to UCSF, University California San Francisco. So, he was not allowed to donate his brain or to have anything removed after death. Since he had signed papers and decided this before I even knew him, I could not change his decision. I can only hope that the study of his remains at the University could bring about some answers.  Jan's answers : I guess my husband became incontinent about 7 years before he died when he could no longer recognize a toilet and would void anywhere, but the toilet. He was still able to walk with a walker to the toilet, if he could recognize it, but he could not recoginze it. If I got him to a toilet on time he would void in the toilet.  Although Jim walked with a walker, he did not use the walker appropriately, and needed me at his side to steady him. He would be in a hurry and his feet would stick to the floor like they were stuck with glue and he couldn't get them moving called, " Festination, " a well known Parkinson's gait. Also, the walker would get way ahead of him, he never could keep it directly in front of him, sometimes it got in his way to move quickly, as he seemed always in a hurry, and he would lift the walker or drag it behind him to get it out of his way, so it was more of a danger than a help, and I always had to be at his side when he used it. Six years before he died, he went into a nursing home and the PT (Therapist) recommended for him to be in a wheelchair for safety at the nursing home and he lost the ability to use his legs. He was combative when the therapist attempted to walk him, so they did not deal with him. I made sure that he kept his weight bearing, by me exercising his legs while he was on the bed and by also having him reach for the wall railing while he sat in his wheelchair and pull himself up to a stand. Sometimes I had to grab him by the seat of his pants and help him to pull up, but he did most of the work of pulling up to stand. When I was there, because of his weight bearing, I could get him to the toilet and position him over the toilet to sit and void. The nurses were not always able to change him every two hours, but they made good attempts. Many people needed their attention. I spent 8-10 hours at the nusing home with my husband everyday to advocate for him and help him, except for major holidays like; Thanksgiving, Christmas....... when I had to be with my family. I became the only person that could understand my husband, he did not talk or carry on conversations and talked in a very low whisper when he said anything. I had to speak to him slowly in two or three word sentences, so he could process what I was saying. Most everyone spoke way too fast for him to process what they were saying and he stopped talking altogether with them. I was with him everyday for that purpose also, so I wouldn't lose what he was trying to say or tell me. It is like a mother with a baby, you begin to learn their body language and their cries for what their needs are. Anyway, it worked for us and it doesn't always work for everyone. I desperately tried to keep that contact with him, so I could convey his needs to the nursing staff. He did not recognize his own kids, (adults). They didn't visit him too often. They were not our children together, they were from another marriage. Jim had been divorced for several years before I met him. Jim had Capgras Syndrome and knew it was me, but I was an imposter of me at times. So, he was always testing me to find out if it was me. One time he asked if I knew where the treasure was hidden and if I did, he would know it was me. I had no clue to where any treasure was hidden and so I started guessing and I failed miserably. He pulled his cheap watch out of his pocket and said here it is. WHO KNEW?! LOL I was not allowed in the bathroom to help him since I was not me! Most of the time, he knew me, even up to when he died. He said, " Bah " to me..... " Bye. " He was so weak, I don't know how he got the energy to manage to get that sound out. He died of complications of Aspiration Pneumonia and a UTI and refused to eat the last 5 days of his life. He was all bone and very weak. He had it in his Directive he did not want any life supports or IVs of antibiotics if he stopped eating or taking pills, so they could not give him antibiotics. The doctor and the family followed his wishes at the end. Hospice was also there. Altogether with Parkinsonism at the beginning and dementia following in 2000, it was about a 15/16 year journey. 10 years with dementia. Jim died at the beginning of what would have been the 11th year following dementia, but the neurologist had not heard of LBD in 2000 and Jim was not clinically diagnosed until Oct. 2003. It was not until 1996 that a group of scientists defined the diagnostic criteria for doctors. So the information was slowly getting out to the medical community.   Below is in answer to Phases not Stages in LBD: This was done by women in our support group and found in our Links Files in Yahoo Groups LBDcaregivers http://health.groups.yahoo.com/group/LBDcaregivers/files/LBD%20Phases/  LBD APPROXIMATE PHASES AS SEEN BY CARING SPOUSES June 2007  Facilitated by Sue of West Virginia, edited by June Christensen, Kansas Please be aware that the following piece is based on the discussions and observations of the LBD caring spouses. It is in no way based on research or science and is not intended to represent research or science. It is developed to assist newly diagnosed families with a framework to refer to. As one retired spouse has said, " To be forewarned is to be forearmed. " The phases have no specific time frame. Due to the fluctuations of the disease, the phases are not linear. Instead, phases tend to " ebb and flow " or subtly appear. Symptoms noted in an early phase may be present for the course of the disease. These symptoms may increase in frequency or severity over time. In addition, patients that are " high-functioning " may also show symptoms of Phase III or IV.  By no means will a patient display all the symptoms listed in any specific phase.  Therefore, each phase is described with " possible " symptoms. GLOSSARY OF ACRONYMS ADL Activities of Daily Living - dressing/bathing/ feeding oneself BP Blood Pressure CG Caregiver DME Durable Medical Equipment--wheel chair, shower chair DPOA Durable Power of Attorney LBD Lewy Body Dementia LO Loved One LW Living Will MPOA Medical Power of Attorney PCP Primary Care Physician POA Power of Attorney REM Rapid Eye Movement sleep disorder URI Upper Respiratory Infection UTI Urinary Tract Infection WCh Wheelchair  PHASE I POSSIBILITIES Most caregivers are concerned/worried that something is not right. Please note that symptoms from later stages can appear at this early phase. At the end of this phase, dementia is becoming difficult to deny *Possible REM sleep disorder; Restless Leg Syndrome; Hallucinations; possible Parkinson’s disease diagnosis, Myoclonus (involuntary jerking) *Increased daytime sleep - two+ hours *Loss of sense of smell (Anosmia); vision problems; hearing loss; speech problems *Impaired physical coordination (ataxia); shuffling gait; slowness of movement; altered posture (called Lewy Lean) *Chronic runny nose *Impaired comprehension and cognition; inability to learn new tasks; loss of initiative and interests; diminished alertness *Short-term memory loss but able to hide (mask) symptoms or engage in show time *Mood: Fluctuations; depressed/anxious; paranoia; may accuse spouse of infidelity, aggression *Able to engage independently in leisure activities *Handwriting is affected; impaired ability to handle financial responsibilities *Still may be able to work but driving skills often compromised  PHASE II POSSIBILITIES Most caregivers are worried that something is wrong and seek medical attention. May be given an incorrect diagnosis (Alzheimer’s, Multisystem atrophy, Multi-Infarct Dementia, Depression, Parkinson’s). Please note that symptoms from later or earlier stages can appear at this phase. It is strongly suggested that caregivers consult with an elder law attorney at this phase. At least, have a Power of Attorney and Medical Power of Attorney document on the patient. Family, friends, caregivers may successfully take financial advantage of LO. Caregivers need to familiarize themselves with all finances and assets to possibly consult with a financial advisor. *Ambulates/transfers without assistance but increased risk for falls/requires walker; leaning to one side (Lewy Lean); possible fainting; able to perform most ADLs without assistance *Some autonomic dysfunction (changes in BP, sweating, fainting, dry mouth), occasional episodes of incontinence (one or two a month), constipation *Parkinson’s symptoms may be controlled with medication *Increased difficulty in: Finding words (aphasia); organizing thoughts; reading & comprehension; following TV programs; operating home appliances *May be able to administer own medications. *Able to follow content of most conversations *Able to be left unsupervised for two or more hours *Delusions; Capgras Syndrome (seeing or thinking that a person or objects have been replaced by another identical one); may be more depressed; more paranoid and more agitated  PHASE III POSSIBILITIES Most caregivers have the correct diagnosis. Caregiver and patient actively grieve. Caregivers need regular planned respite. Caregiver needs require regular preventive health care. Caregivers may need home health aide assistance to maintain LO in the home. Patient is at risk for long-term care due to: psychological symptoms, personal safety risk, and caregiver safety risk. The needs of the patient affect personal finances. Please note that symptoms from later or earlier stages can appear at this phase. *Ambulation/transfers are impaired, needs assistance with some portion of movement *At risk for falls; increase of Parkinsonism symptoms *Increase of autonomic dysfunctions; frequent episodes of incontinence (two+ per week) *Needs assistance/supervision with most ADLs; may require DME *Speech becomes impaired, projection (volume) may decrease *Able to follow content of most simple/brief conversations or simple commands; increased difficulty with expressive language *Able to be left unsupervised less than one hour but unable to work or drive *Unable to administer medication without supervision *Unable to organize or participate in leisure activities *Inability to tell time or comprehend time passing *Mood fluctuations (depressed, paranoid, anxious, angry) requiring medical monitoring; increased confusion; delusions; and increased Capgras Syndrome *Severity of symptoms may increase or decrease  PHASE IV POSSIBILITIES Caregiver at high risk for chronic health/joint problems. Self-care is paramount to providing patient care. The needs of the patient require the assistance of a home-health aide/private-duty aide two-to-seven days per week. Increased patient needs may require potential for long-term care placement. Patient may be declared mentally incapacitated. Caregiver may need to explore Hospice services. *Needs continuous assistance with ambulation/transfers; high risk for falls; may need electronic lift recliner chair *Needs assistance with all ADLs; requires 24-hour supervision *Autonomic dysfunctions need regular medical monitoring; incontinent of bladder and bowel *Unable to follow content of most simple/brief conversations or commands; speech limited to simple sentences or one-to-three-word responses *Parkinson’s symptoms need regular medical monitoring *Choking, difficulty swallowing (dysphasia), aspiration, excessive drooling *Increased daytime sleeping *Hallucinations prevalent but less troublesome  PHASE V POSSIBILITIES Caregiver is actively grieving. Potential for increased caregiver stress. Hospice assistance is strongly suggested. Caregiver will need hands-on support from others to maintain LO at home. Caregiver may need to honor decisions made earlier on the Living Will. *Dependent for all ADLs; patient may require hospital bed, Hoyer lift or Mo-lift, suction machine, etc.); and assistance with repositioning *High risk for URI, pneumonia, and UTI ; skin breakdown; and may have a fever *Difficulty swallowing with possible decision for feeding tube necessary *Muscle contractions - hands, legs, arms; lean to either side very pronounced *May need nutritional supplements - Ensure/Boost/ Carnation Instant Breakfast *Unable to follow simple commands; decreased or no language skills *Constant delusions *Fluctuations less frequent and more severe   June 30, 2007  ________________________________ Hi Jan - You sound like a true expert on the comparison between PDD and LBD - and similarities ! Your husband sounds much like my mom in regard to his symptoms and and the parkinsons showing up first and then the dementia ! My mother has been in the " late stages " for app a year - and we can't imagine things getting much worse. She is fully incontinent - can no longer walk , cannot talk and doesn't recognize us, her family ! I'm wondering if u would share how long your husband was in this stage for and how he passed ? Thank you ! Judy R. Strauss LMSW PhD Lead Faculty University of Phoenix Jersey City Campus 100 Town Square Place |Jersey City, NJ 07310 Cell-  Email- Jrstr@...  > > > Hi Tania, > My husband also had PDD, as most have explained, it is in the same spectrum as LBD. Instead of Lewy Body Dementia, LBD is also an acronym for Lewy Body Disease, because both Lewy Body Dementia and PDD have Lewy Bodies. The Protein Cell Bodies on the brain exist in both diseases and are named after a Dr. Lewy. I attended the first conference on PDD vs. DLB in Washington DC, and it was determined by the research doctors that both were within the spectrum of LBD. PDD typically starts out with a Parkinsonism for several years and develops dementia later. DLB or Dementia with Lewy Bodies (LBD) starts out with dementia and sometimes is found in earlier ages with early onset dementia, they may or may not get parkinsonism, but if they do it follows within a year or a short time after the dementia. > My husband died nearly a year ago in January. He started out with a Parkinsonism, not a true Parkinson's, but had mostly the Parkinson's gait and falling a lot. He had it 5 to 6 years before the dementia appeared full blown in 2000. He did have mild hallucinations, mostly of bugs and people in the room, and also delusions; plus he had Capgras pronounched: (Cap Grah) like the ending of Mardigras is pronounced. Not everyone follows the same order of symptoms, but they all are very similar. > Jan Colello, East Bay, San Francisco Bay Area > Husband, Jim Colello, dx w/ PDD/LBD Oct. 2003 > Deceased, January, 2011 > > > ________________________________ > > To: LBDcaregivers > Sent: Thursday, December 1, 2011 3:37 AM > Subject: Different day, different diagnosis > > We took Dad (dx Parkinson's in 2010, then LBD early 2011) to Sydney > today to see a new neurologist today. This is her: > http://www.mq.edu.au/about_us/faculties_and_departments/faculty_of_human\ > _sciences/asam/our_staff/dr_carolyn_f_orr/. For the record, she seems to > be an incredible mind and was so thoughtful regarding Dad's condition > and feelings. I had forewarned her that his last neuro made some > negative comments that had impacted greatly on Dad's depression. > > We hadn't been happy that since refusing to give Dad any more Seroquel > after two days of hell, a couple of months ago, his previous neuro now > had him on no meds for LBD at all aside from a tiny dose of Sinemet. We > were hoping Dr Orr (the new neuro) may be able to offer some clarity and > possibly a better quality of life as Dad's mood had taken a serious turn > for the worse. > > To cut a long story (and 1.5 hour consultation) short, Dr Orr said that > Dad does not have LBD. She has instead diagnosed him with PDD > (Parkinson's Disease Dementia). She said the tell-tale sign was the fact > that Dad had an onset of Parkinson's-related symptoms years before any > cognitive decline - something she said just doesn't happen with LBD as > it's usually the other way around (ie. cognitive decline, with later > Parkinsonian symptoms). I was always suspicious of Dad's diagnosis of > LBD as everyone always mentioned hallucinations which Dad didn't really > have. > > I recall someone on here recently saying that a diagnosis of PDD was > almost always later confirmed as LBD. But from what I have now > researched, as well as what we were told today, it seems highly unlikely > that Dad does have LBD. > > I'm wondering if anyone has had any similar experiences? This is the > third diagnosis in less than 2 years. We absolutely trust the woman we > saw today and everything she's told us makes sense but the comments of > someone on here recently keep replaying in my mind. > > Thanks, Tania. > > ------------------------------------ > > Welcome to LBDcaregivers. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2011 Report Share Posted December 4, 2011 Hello, I get the impression that the age of the LBD patient comes into play as far as outlook and life expectancy. It would be helpful if you could put the ages of your loved ones in the posts that talk about their progression. My mom is 86 and at approximately stage III. Except for lightheadedness, fainting, and acting out in her sleep (which have been happening for a long time) her symptoms have all come on in the last 2--3 years with most of them manifesting this last summer. That seems like quick progression to me based on most of your experiences. It seems natural (from it getting so much activity at this group) to try to figure out what's ahead for us. (daughter and caregiver of Lois-86) > > > > > > > > > > > Hi Tania, > > > My husband also had PDD, as most have explained, it is in the same spectrum as LBD. Instead of Lewy Body Dementia, LBD is also an acronym for Lewy Body Disease, because both Lewy Body Dementia and PDD have Lewy Bodies. The Protein Cell Bodies on the brain exist in both diseases and are named after a Dr. Lewy. I attended the first conference on PDD vs. DLB in Washington DC, and it was determined by the research doctors that both were within the spectrum of LBD. PDD typically starts out with a Parkinsonism for several years and develops dementia later. DLB or Dementia with Lewy Bodies (LBD) starts out with dementia and sometimes is found in earlier ages with early onset dementia, they may or may not get parkinsonism, but if they do it follows within a year or a short time after the dementia. > > > My husband died nearly a year ago in January. He started out with a Parkinsonism, not a true Parkinson's, but had mostly the Parkinson's gait and falling a lot. He had it 5 to 6 years before the dementia appeared full blown in 2000. He did have mild hallucinations, mostly of bugs and people in the room, and also delusions; plus he had Capgras pronounched: (Cap Grah) like the ending of Mardigras is pronounced. Not everyone follows the same order of symptoms, but they all are very similar. > > > Jan Colello, East Bay, San Francisco Bay Area > > > Husband, Jim Colello, dx w/ PDD/LBD Oct. 2003 > > > Deceased, January, 2011 > > > > > > > > > ________________________________ > > > > > > To: LBDcaregivers > > > Sent: Thursday, December 1, 2011 3:37 AM > > > Subject: Different day, different diagnosis > > > > > > We took Dad (dx Parkinson's in 2010, then LBD early 2011) to Sydney > > > today to see a new neurologist today. This is her: > > > http://www.mq.edu.au/about_us/faculties_and_departments/faculty_of_human\ > > > _sciences/asam/our_staff/dr_carolyn_f_orr/. For the record, she seems to > > > be an incredible mind and was so thoughtful regarding Dad's condition > > > and feelings. I had forewarned her that his last neuro made some > > > negative comments that had impacted greatly on Dad's depression. > > > > > > We hadn't been happy that since refusing to give Dad any more Seroquel > > > after two days of hell, a couple of months ago, his previous neuro now > > > had him on no meds for LBD at all aside from a tiny dose of Sinemet. We > > > were hoping Dr Orr (the new neuro) may be able to offer some clarity and > > > possibly a better quality of life as Dad's mood had taken a serious turn > > > for the worse. > > > > > > To cut a long story (and 1.5 hour consultation) short, Dr Orr said that > > > Dad does not have LBD. She has instead diagnosed him with PDD > > > (Parkinson's Disease Dementia). She said the tell-tale sign was the fact > > > that Dad had an onset of Parkinson's-related symptoms years before any > > > cognitive decline - something she said just doesn't happen with LBD as > > > it's usually the other way around (ie. cognitive decline, with later > > > Parkinsonian symptoms). I was always suspicious of Dad's diagnosis of > > > LBD as everyone always mentioned hallucinations which Dad didn't really > > > have. > > > > > > I recall someone on here recently saying that a diagnosis of PDD was > > > almost always later confirmed as LBD. But from what I have now > > > researched, as well as what we were told today, it seems highly unlikely > > > that Dad does have LBD. > > > > > > I'm wondering if anyone has had any similar experiences? This is the > > > third diagnosis in less than 2 years. We absolutely trust the woman we > > > saw today and everything she's told us makes sense but the comments of > > > someone on here recently keep replaying in my mind. > > > > > > Thanks, Tania. > > > > > > ------------------------------------ > > > > > > Welcome to LBDcaregivers. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2011 Report Share Posted December 4, 2011 Hi Thanks for your post and you are correct that we should give our Los ages to better identify how age impacts the trajectory of the course of the disease ! My mom is 77 and the symptoms began to have a major effect about 2009 - I think of my mom as being quite young and having to endire this unrelenting downhill progression of the disease ! Best , Judy Judy R. Strauss LMSW PhD Lead Faculty University of Phoenix Jersey City Campus 100 Town Square Place |Jersey City, NJ 07310 Cell- Email- Jrstr@... > Hello, > I get the impression that the age of the LBD patient comes into play as far as outlook and life expectancy. It would be helpful if you could put the ages of your loved ones in the posts that talk about their progression. My mom is 86 and at approximately stage III. Except for lightheadedness, fainting, and acting out in her sleep (which have been happening for a long time) her symptoms have all come on in the last 2--3 years with most of them manifesting this last summer. That seems like quick progression to me based on most of your experiences. It seems natural (from it getting so much activity at this group) to try to figure out what's ahead for us. > (daughter and caregiver of Lois-86) > > > > > > > Hi Judy, > > > Judy stated: My mother has been in the " late stages " for app a year - and we can't imagine things getting much worse. She is fully incontinent - can no longer walk , cannot talk and doesn't recognize us, her family ! > > > I'm wondering if u would share how long your husband was in this stage for and how he passed ? > > > > > > As it is known here, not all LO's get the same symptoms, but similar, and not always in the same Phase of LBD. " Phase " is used more often in LBD than " Stage, " as LBD does not seem to follow stages as Alzheimers does, but more of a Phase. (Scroll to bottom) As Robin has stated until there is an autopsy after death, if decided on, we really don't have a factual answer to if our LO is suffering from PDD/DLB. My husband had a clinical diagnosis from his neurologist. > > > He had way before in his healthy years, even before Parkinsonism set in, donated his remains to UCSF, University California San Francisco. So, he was not allowed to donate his brain or to have anything removed after death. Since he had signed papers and decided this before I even knew him, I could not change his decision. I can only hope that the study of his remains at the University could bring about some answers. > > > > > > Jan's answers : > > > I guess my husband became incontinent about 7 years before he died when he could no longer recognize a toilet and would void anywhere, but the toilet. He was still able to walk with a walker to the toilet, if he could recognize it, but he could not recoginze it. If I got him to a toilet on time he would void in the toilet. > > > Although Jim walked with a walker, he did not use the walker appropriately, and needed me at his side to steady him. He would be in a hurry and his feet would stick to the floor like they were stuck with glue and he couldn't get them moving called, " Festination, " a well > > > known Parkinson's gait. Also, the walker would get way ahead of him, he never could keep it directly in front of him, sometimes it got in his way to move quickly, as he seemed always in a hurry, and he would lift the walker or drag it behind him to get it out of his way, so it was more of a danger than a help, and I always had to be at his side when he used it. Six years before he died, he went into a nursing home and the PT (Therapist) recommended for him to be in a wheelchair for safety at the nursing home and he lost the ability to use his legs. He was combative when the therapist attempted to walk him, so they did not deal with him. I made sure that he kept his weight bearing, by me exercising his legs while he was on the bed and by also having him reach for the wall railing while he sat in his wheelchair and pull himself up to a stand. Sometimes I had to grab him by the seat of his pants and help him to pull up, but he did most of the work of > > > pulling up to stand. When I was there, because of his weight bearing, I could get him to the toilet and position him over the toilet to sit and void. The nurses were not always able to change him every two hours, but they made good attempts. Many people needed their attention. I spent 8-10 hours at the nusing home with my husband everyday to advocate for him and help him, except for major holidays like; Thanksgiving, Christmas....... when I had to be with my family. > > > I became the only person that could understand my husband, he did not talk or carry on conversations and talked in a very low whisper when he said anything. I had to speak to him slowly in two or three word sentences, so he could process what I was saying. Most everyone spoke way too fast for him to process what they were saying and he stopped talking altogether with them. I was with him everyday for that purpose also, so I wouldn't lose what he was trying to say or tell me. It is like a mother with a baby, you begin to learn their body language and their cries for what their needs are. Anyway, it worked for us and it doesn't always work for everyone. I desperately tried to keep that contact with him, so I could convey his needs to the nursing staff. He did not recognize his own kids, (adults). They didn't visit him too often. They were not our children together, they were from another marriage. Jim had been divorced for several years before I met him. > > > Jim had Capgras Syndrome and knew it was me, but I was an imposter of me at times. So, he was always testing me to find out if it was me. One time he asked if I knew where the treasure was hidden and if I did, he would know it was me. I had no clue to where any treasure > > > was hidden and so I started guessing and I failed miserably. He pulled his cheap watch out of his pocket and said here it is. WHO KNEW?! LOL I was not allowed in the bathroom to help him since I was not me! Most of the time, he knew me, even up to when he died. > > > He said, " Bah " to me..... " Bye. " He was so weak, I don't know how he got the energy to manage to get that sound out. > > > He died of complications of Aspiration Pneumonia and a UTI and refused to eat the last 5 days of his life. He was all bone and very weak. > > > He had it in his Directive he did not want any life supports or IVs of antibiotics if he stopped eating or taking pills, so they could not give him antibiotics. The doctor and the family followed his wishes at the end. Hospice was also there. > > > Altogether with Parkinsonism at the beginning and dementia following in 2000, it was about a 15/16 year journey. 10 years with dementia. Jim died at the beginning of what would have been the 11th year following dementia, but the neurologist had not heard of LBD in 2000 and Jim was not clinically diagnosed until Oct. 2003. It was not until 1996 that a group of scientists defined the diagnostic criteria for doctors. So the information was slowly getting out to the medical community. > > > > > > > > > Below is in answer to Phases not Stages in LBD: This was done by women in our support group and found in our Links Files in Yahoo Groups LBDcaregivers http://health.groups.yahoo.com/group/LBDcaregivers/files/LBD%20Phases/ > > > > > > LBD APPROXIMATE PHASES AS SEEN BY CARING SPOUSES > > > June 2007 > > > > > > Facilitated by Sue of West Virginia, edited by June Christensen, Kansas > > > > > > Please be aware that the following piece is based on the discussions and observations of the LBD caring spouses. It is in no way based on research or science and is not intended to represent research or science. It is developed to assist newly diagnosed families with a framework to refer to. As one retired spouse has said, " To be forewarned is to be forearmed. " > > > > > > The phases have no specific time frame. Due to the fluctuations of the disease, the phases are not linear. Instead, phases tend to " ebb and flow " or subtly appear. Symptoms noted in an early phase may be present for the course of the disease. These symptoms may increase in frequency or severity over time. In addition, patients that are " high-functioning " may also show symptoms of Phase III or IV. By no means will a patient display all the symptoms listed in any specific phase. Therefore, each phase is described with " possible " symptoms. > > > GLOSSARY OF ACRONYMS > > > ADL Activities of Daily Living - dressing/bathing/ feeding oneself > > > BP Blood Pressure > > > CG Caregiver > > > DME Durable Medical Equipment--wheel chair, shower chair > > > DPOA Durable Power of Attorney > > > LBD Lewy Body Dementia > > > LO Loved One > > > LW Living Will > > > MPOA Medical Power of Attorney > > > PCP Primary Care Physician > > > POA Power of Attorney > > > REM Rapid Eye Movement sleep disorder > > > URI Upper Respiratory Infection > > > UTI Urinary Tract Infection > > > WCh Wheelchair > > > > > > PHASE I POSSIBILITIES > > > Most caregivers are concerned/worried that something is not right. Please note that symptoms from later stages can appear at this early phase. At the end of this phase, dementia is becoming difficult to deny > > > *Possible REM sleep disorder; Restless Leg Syndrome; Hallucinations; possible Parkinson’s disease diagnosis, Myoclonus (involuntary jerking) > > > *Increased daytime sleep - two+ hours > > > *Loss of sense of smell (Anosmia); vision problems; hearing loss; speech problems > > > *Impaired physical coordination (ataxia); shuffling gait; slowness of movement; altered posture (called Lewy Lean) > > > *Chronic runny nose > > > *Impaired comprehension and cognition; inability to learn new tasks; loss of initiative and interests; diminished alertness > > > *Short-term memory loss but able to hide (mask) symptoms or engage in show time > > > *Mood: Fluctuations; depressed/anxious; paranoia; may accuse spouse of infidelity, aggression > > > *Able to engage independently in leisure activities > > > *Handwriting is affected; impaired ability to handle financial responsibilities > > > *Still may be able to work but driving skills often compromised > > > > > > PHASE II POSSIBILITIES > > > Most caregivers are worried that something is wrong and seek medical attention. May be given an incorrect diagnosis (Alzheimer’s, Multisystem atrophy, Multi-Infarct Dementia, Depression, Parkinson’s). Please note that symptoms from later or earlier stages can appear at this phase. > > > It is strongly suggested that caregivers consult with an elder law attorney at this phase. At least, have a Power of Attorney and Medical Power of Attorney document on the patient. Family, friends, caregivers may successfully take financial advantage Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2011 Report Share Posted December 5, 2011 Ask the hospice nurse - ours said it will days, maybe a week. She said that on November 1st. Now he is unconscious and not eating and in fetal position - not communicative. I pray for mercy because he is stuck in a place between life and death - not fully in one place or another. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2011 Report Share Posted December 5, 2011 Hi , Just for interest, my mom started her tremoring at the age of 79 after surgery. The progress physically and then cognitively got worse after another major surgery at age 82. By age 86 we had her stop driving and into assisted living. A year later she needed nh care, wheelchair bound and lived with worsening quality of life until age 92. I know we are all different but that was our timeline. All the best possible as you travel this journey with your mom. > > > > > > > > > > > > > > > Hi Tania, > > > > My husband also had PDD, as most have explained, it is in the same spectrum as LBD. Instead of Lewy Body Dementia, LBD is also an acronym for Lewy Body Disease, because both Lewy Body Dementia and PDD have Lewy Bodies. The Protein Cell Bodies on the brain exist in both diseases and are named after a Dr. Lewy. I attended the first conference on PDD vs. DLB in Washington DC, and it was determined by the research doctors that both were within the spectrum of LBD. PDD typically starts out with a Parkinsonism for several years and develops dementia later. DLB or Dementia with Lewy Bodies (LBD) starts out with dementia and sometimes is found in earlier ages with early onset dementia, they may or may not get parkinsonism, but if they do it follows within a year or a short time after the dementia. > > > > My husband died nearly a year ago in January. He started out with a Parkinsonism, not a true Parkinson's, but had mostly the Parkinson's gait and falling a lot. He had it 5 to 6 years before the dementia appeared full blown in 2000. He did have mild hallucinations, mostly of bugs and people in the room, and also delusions; plus he had Capgras pronounched: (Cap Grah) like the ending of Mardigras is pronounced. Not everyone follows the same order of symptoms, but they all are very similar. > > > > Jan Colello, East Bay, San Francisco Bay Area > > > > Husband, Jim Colello, dx w/ PDD/LBD Oct. 2003 > > > > Deceased, January, 2011 > > > > > > > > > > > > ________________________________ > > > > From: aussiebin <taniamartin@> > > > > To: LBDcaregivers > > > > Sent: Thursday, December 1, 2011 3:37 AM > > > > Subject: Different day, different diagnosis > > > > > > > > We took Dad (dx Parkinson's in 2010, then LBD early 2011) to Sydney > > > > today to see a new neurologist today. This is her: > > > > http://www.mq.edu.au/about_us/faculties_and_departments/faculty_of_human\ > > > > _sciences/asam/our_staff/dr_carolyn_f_orr/. For the record, she seems to > > > > be an incredible mind and was so thoughtful regarding Dad's condition > > > > and feelings. I had forewarned her that his last neuro made some > > > > negative comments that had impacted greatly on Dad's depression. > > > > > > > > We hadn't been happy that since refusing to give Dad any more Seroquel > > > > after two days of hell, a couple of months ago, his previous neuro now > > > > had him on no meds for LBD at all aside from a tiny dose of Sinemet. We > > > > were hoping Dr Orr (the new neuro) may be able to offer some clarity and > > > > possibly a better quality of life as Dad's mood had taken a serious turn > > > > for the worse. > > > > > > > > To cut a long story (and 1.5 hour consultation) short, Dr Orr said that > > > > Dad does not have LBD. She has instead diagnosed him with PDD > > > > (Parkinson's Disease Dementia). She said the tell-tale sign was the fact > > > > that Dad had an onset of Parkinson's-related symptoms years before any > > > > cognitive decline - something she said just doesn't happen with LBD as > > > > it's usually the other way around (ie. cognitive decline, with later > > > > Parkinsonian symptoms). I was always suspicious of Dad's diagnosis of > > > > LBD as everyone always mentioned hallucinations which Dad didn't really > > > > have. > > > > > > > > I recall someone on here recently saying that a diagnosis of PDD was > > > > almost always later confirmed as LBD. But from what I have now > > > > researched, as well as what we were told today, it seems highly unlikely > > > > that Dad does have LBD. > > > > > > > > I'm wondering if anyone has had any similar experiences? This is the > > > > third diagnosis in less than 2 years. We absolutely trust the woman we > > > > saw today and everything she's told us makes sense but the comments of > > > > someone on here recently keep replaying in my mind. > > > > > > > > Thanks, Tania. > > > > > > > > ------------------------------------ > > > > > > > > Welcome to LBDcaregivers. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2011 Report Share Posted December 5, 2011 Thanks Judy, Janet, , (I hope I didn't forget anyone). Mom is 86. I feel guilty for saying that I hope she is taken by other sickness/problems before her LBD gets too, too bad. When I read others say the similar things I understand completely so I know this is a safe place for me to express those thoughts, myself. I try comfort her now when she can't think of her words and seems so sad and frustrated. She has recently started having so much confusion about how the toilet works, of all things--not sure of the sequence of events. It is so hard to see this happen. I feel fortunate that this has struck her so late in life, compared to some of your stories. I am very glad this forum is here for us to share. (daughter and caregiver of Lois--86) > > > Quote Link to comment Share on other sites More sharing options...
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