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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Stories, July 2011 - March 2012 (5 stories)

Story 1. Received: July 1, 2011

My brother noticed tremors in my left foot and leg April-May 2010, possible Parkinsons. In Aug of 2010 I was diagnosed with LBD. July 2011 have so much pain in lower extremities traveling up into my hips and now up to my trunk. The pain and muscle tightening has progressively gotten so I can't stand the pain. My hand writing has gotten so small and jumpy, it goes up hill, it is not legible at all. I have now been diagnosed with Parkinsons stage 5 along with LBD. I am bedridden and need help with all daily functions.

My father had LBD and was diagnosed 2 1/2 yrs prior to his death in 1994 when he was 86. I am now 73 and want to die. I can't take any strong pain meds due to breathing problems so I try tylenol but not too much relief at all. My name is H and I hope they find a cure for LBD. I don't feel any of the meds help much at all.

Story 2. Received: February 22, 2012

Dear Lewy Body Journal,

I feel so much better to know that this disease is actually very common. My mom is 57 years old and was recently diagnosed with LBD. My mom had always been a hard-working single mother. She would get home from work to clean the house, etc. As most of the people, I hadn't noticed anything weird with my mom at first. It was things that can usually happen to anyone. For example, she would forget where she put the keys, sometimes she would come home from work and take a nap then wake up thinking it was already morning but I thought that was normal, it could happen to anybody. It wasn't until November 2010 that an event occurred and really got my concern. We had gone out of town to visit my sister-in-law's family. I slept in the same bed as my mom did, we went to sleep like any other night. In the morning she woke me up asking me where we were and how did she get there. She honestly was confused and seemed scared. She "came back" about 15-20 minutes later.

After that day, we took her to the doc, they did studies and tests on her to find out was wrong. Another event that happened that scared the heck out of us was when one day my mom went out to the store and called my brother crying saying she didn't know how to get home. This disease has just struck her out of nowhere and very rapidly. She now drives very slow (which she shouldn't even be doing at all), she doesn't really like to clean the house, she has lost significant weight, she has hallucinations (she talks to the people in the tv, she says that the people in the tv come out and sit with her, that people in cars park in front of her house to watch her, etc, etc).

My mother lives with my grandma who is 92 years old and recently became very violent. Also, she repeats the same question about 4 times in 10 minutes & sometimes is very frustrating but I manage to control myself and be patient. Both my mother and my grandmother are driving each other crazy. I have a baby of 4 months and am pregnant once again, I live in a 1 bedroom apartment with my husband and it is really hard for me to just focus on them.

I don't know how this is going to turn out because my grandma is very old and she should be taken care of, just as my mom is very sick and should be looked out for.

The only thing that makes them both be peaceful is when my son, their only grandson, is around. I try to go as often as I can. I just hope that this disease does not end with them both and that they find a cure very soon because they don't know the damage that it causes, not only to the diseased but to the family as well. Mentally, emotionally, and physically as well.

It's been very sad to read how these people have ended up and to know that my mom will most likely get like that because I'm young and really need her. But I trust God and believe that everything happens for a reason.


Story 3. Received: March 8, 2012

I am 63 yrs old and my common law husband of 21 yrs has, I am sure, lewy bodies now that I read other people's stories. He too got diagnosed with Parkinson's. I noticed him dragging his feet about 2 yrs after I had started to notice that he wasn't absorbing everyday facts. He would pick a few words out of someone else's conversation and go off on a tangent which would have nothing to do with the main subject of the conversation. I noticed the change shortly before he was 65 yrs. Now he is 71.

2010 and 2011 have been very difficult. #1 was getting his driver's license away on him. In summer of 2010 he started having hallucinations usually starting about 4 AM. Accusing me of trying to poison him (saying he had some kind of chemical taste in his mouth). He also had phantom smells. (I didn't know all this was common with this disease.) He lost all track of time. If he had an appointment 5 days away he would never let up on me. I would finally have to pretend to call the place to confirm. He would not take any medication. He would blame a medication for how he was walking. Yet he was having trouble walking long before medication was started. He couldn't put events in any kind of order. He sometimes started to get a bit better in late afternoon and evening. I noticed one person was upset in one of the stories because the parent would put arms up to protect himself as if he thought he was going to be hit. This is a judgment problem that goes with the disease. My husband does that all the time. He has to be approached slowly. He perceives objects a lot closer to him then they actually are.

Dec 2010 he seemed to get more unsteady and more disoriented. He fell at farm house. He was sore in rib area but could get around. The night we came back to the city he complained of pain in lower abdomen. He said he couldn't stand the pain any longer so I called an ambulance. Things just kept getting worse. When he had some x-rays done, he came back, had some sort of seizure. It wasn't really a seizure because he was aware of what was happening. Family was called but he seemed to snap out of it. He was being given morphine for the pain which I asked to have increased because 5mg wasn't giving him much comfort. From some of the other stories I read it sounds like the morphine was what helped put him into a semi-conscious state. Medical Staff put pressure on me to just let him go. He was too out of it to eat and and at first I said no G-tube. So I finally asked for his medication be discontinued so he would be alert enough to try to eat. He spit food out and slapped food out of my hand, so finally I said okay, take the IV out and let him go. I assumed he would be given morphine every four hours so he wouldn't suffer from hunger or whatever. That wasn't the case. He would wake up and know me, so after 2 1/2 days I told Medical Staff, "I can't do this. Put the feeding tube in." By this time he had dropped from 130 pounds to 104. He had gotten very congested in his throat. His mouth was a mess from not drinking. I was so worried he was going to choke to death alone in his room at night. He was suctioned several times but it didn't help. He kept asking to go to bathroom, he didn't want to use the diaper. Medical Staff would not get him up. So I started sitting him up at bedside and the second day he coughed up a huge gob of phlegm. Congestion was completely gone.

After the tube was put in I decided to bring him home. Ambulance brought him home and laid him on the couch. (I had worked several years as an RNA.) I had thought I could use a lift, but it wouldn't go under couch. Home care wanted me to get a hospital bed. My house is very small. I finally agreed but before we got the bed, he started sitting up from lying down position on his own. I knew he wouldn't be able to sit up on his own in a hospital bed so I canceled it. I managed to get him on a commode once a day. He began to give me a very hard time resisting anything I had to do for him, yelling at me etc. I finally had had enough and he was put in a nursing home. The doctor at nursing home adjusted his medication and after a couple of weeks he was more like he had been in 2009. He begged and begged me to bring him home. I brought him home for a week end and it was remarkable how much better mentally he was. The Aricept worked well for him, and Trazadone helped the hallucinations.

It is now almost a year later. Mentally he is still not too bad, but he has had a couple of falls in three days. He is very unsteady. Since beginning of January, I have not been able to understand him. By the end of the day I am worn out trying to understand what he wants. I have told several people that we could have a half way normal life if we could carry on some sort of conversation. The conversation has to be quite simple. Not too much information at once. In one person's story he mentioned that when visitors came, his father seemed to be able to carry on a fair conversation and no one really knew what the family was going through. It is exactly the same here. He knows everyone. I noticed the difference between my mother who had Alzheimer's and my husband. He doesn't really do inappropriate things.

Many thanks for this site. It has been a relief to know for sure. The last specialist suggested Lewy Bodies only.


Story 4. Received: March 11, 2012

I can't tell you enough how wonderful it was to have a place to go and read the stories of all the families that are dealing with or dealt with this awful disease. My wonderful Dad was diagnosed about 3 years ago, but we suspect he had this for 3-4 years prior. In the beginning he had simple forgetfulness. Forgetting what time he had to go to work, or leaving work early by accident and forgetting where he put something. As the years passed he started to hallucinate, people were in the yard. We kept telling him there wasn't anyone there. Little did we know we were supposed to tell the people to go away.

It was recommended that my father retire from his part time job that kept him busy after retiring from his full time job. He was making many mistakes, and it was best if he did not work. This seemed to make my Dad worse. Now he had lost his reason to get up in the morning. The hallucinations worsened, we now had people in the house and things coming out of the clocks. Dad seemed to become unsteady on his feet, needing assistance to get up and down stairs. We had to have them take Dad's license to drive for fear he would hurt himself or someone else. He started asking Mom when his wife was coming home and what time her shift was over. Not long after that he had forgotten his children's names. The doctors said that any kind of traumatic event in their life would make the symptoms worse. Last Halloween, 2011, we had a horrific snow storm that took down massive amounts of trees and left people without heat and power for 1-2 weeks. This seemed to put my Dad into the final stages of his disease. He started to shuffle his feet, he forgot how to eat (barely getting a fork to his mouth), had trouble sitting down in a chair, moved furniture from room to room, asked when he was moving home, couldn't remember where to hang his sweater and became very angry if you tried to help him. He was breaking furniture and the worst was when he accused my Mom of having an affair and wanted to go to see a lawyer (49 years of marriage). This was when Mom realized her loving husband was really gone already. That was on Thanksgiving day, 2011.

Dad was sleeping all the time, and he even started to faint/collapse. December 4th Dad collapsed and Mom decided to get him checked and she called the ambulance. He was admitted in the hospital and he had a sitter, someone from the hospital watching him around the clock. Dad was combative that first day and the doctors thought it was his meds. After 2-3 days of no meds and Dad didn't open his eyes again, and barely ate, they recommended a nursing home. My parents had discussed years earlier that they would not want to be kept alive by any extreme measures. Dad was not put on a feeding tube. Why make his body stay when his mind was gone? We visited him daily, told him we loved him, and he was comfortable. The nursing home stay only lasted 3 days. I will never forget that last day: December 12, 2011. His room filled with all his friends and family. This horrific disease took my Dad to make his final journey. He is at peace now, no more fighting with his dreams, or being unable to do the simple things of daily living.

I hope someday they find a cure for Lewy Body Dementia.


Story 5. Received: March 26, 2012

I found your journal by accident. I just wanted to let you know this is a wonderful site because when a family member dies from this awful disease, you just need answers.

My Dad died in January 2012, aged 83 from Lewy Body Dementia. Unfortunately, when I look back, my Mum and I knew something was amiss but we could not get the help needed. There is much ignorance in the medical world and even his own GP did not recognise the symptoms. I have been nursing for over thirty years and must admit, I did not know about this disease either.

Dad was a very intelligent man, he was an architect, he was also very sporty all of his life, playing regular golf and bowling up until he was 80. He even worked from home until he was 75 years old.

In the past couple of years, he started to find everyday things more difficult and became more withdrawn from his friends. He stopped playing golf and didn't want to speak to any of his friends. His GP was treating him for depression with Mirtazepine but this did not seem to help much. My brother left Scotland to work in the USA around that time, and we thought he was sad about that. Then he became concerned that he was going bankrupt, he could not do his finances. Mum and I thought there was something wrong, even thinking about early dementia or brain metastases from some kind of cancer.

Just before Christmas 2011, he had a urinary tract infection and was treated for this, however, he became quite dehydrated and was beginning to fall in the house. He was also hallucinating, crying out for help during the night and seeing his grandchildren under his bed. His GP admitted him to the local hospital for tests. All his tests including a CT scan came back negative. We visited him in the evening and he said to me that the nurses were the 'KGB'. He was very confused and I informed the nurses. We left him sitting up reading his newspaper and eating some sweets. The following day, we were informed he had been transferred to another hospital because according to them it was nearer for us to visit. When we went to see him in the afternoon visiting hour, we were shocked. He was totally oversedated and lying in a wet bed. We complained, to be told he had arrived from the other hospital in that condition. During the time he was in this hospital, he did have spells of lucid moments, when he knew he was not being treated well and even said on one occasion that he was going to get a taxi home, if we didn't take him home. I now wish I had signed him out of the hospital when I knew what he had been given and what was to come.

Poor Dad, he had been given antipsychotic drugs and was severely dehydrated. We had to ask for him to be given fluids. He then went into shock, was transferred to CCU, had copious amounts of iv fluids, then four pints of blood. He then got pneumonia and was transferred to the Neurology Department of another hospital on one of the coldest nights of the year in Scotland, having lost his dressing gown, metal plate for his teeth, slippers and pyjamas! He was struggling to breath, I had to ask for a physio to see him, we pleaded that he be saved as we had no diagnosis. He was intubated and put on life support. All his tests including an MRI and LP came back negative. Eventually, they tried three days of steroids which did not help. The consultant said he would NOT re-intubate my father if something happened, but they still had no diagnosis. Two days before he died, they put a red warning bracelet on his wrist which stated 'AVOID HALOPERIDOL'. I believe the neurologist had a good idea that Dad was suffering from LBD.

They took all the tubes off Dad and extubated him. The next morning, he was doing very poorly, Cheyne-Stokes breathing. We met with the doctors. I asked them what they would put on his death certificate. They said it would state 'encephalopathy of unknown origin'. We just got back in time to be with Dad before he took four or five agonal breaths, then he passed away in front of myself, a nurse of over thirty years, my brother and Mum. It was awful.

The neurologist stated that LBD can only be diagnosed after death, however, I believe this is untrue and reading your journal, I now know this is a fallacy.

Apart from the terrible things my Dad had to go through the last four weeks of his life whilst in hospital, I felt it necessary to highlight this and have joined the Lewy Body Society in the UK. As a nurse, I would like to help promote knowledge and understanding of this terrible disease. My heart goes out to all families who have lived through such trauma and heartache. Keep up the good work.


Stories, October 2013 - August 2014
Stories, January - June 2011
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