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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Stories, February - July 2010 (5 stories)

Story 1. Received: February 12, 2010

My wife was diagnosed with Parkinson's in 1997. In early 1998 the doctor began to prescribe medications which did little to address her balance, minor tremor and visual complications. Within weeks the hallucinations began: picking things off the floor, seeing people and/or things, you're not my husband and this is not my house.

I started to educate myself with the help of the internet and various periodicals plus corresponding with numerous care giver groups. The doctor visits were of little or no help — every six months. No matter how often I questioned them regarding her visual and limited response to the medications I would get such comments as "no two patients are alike", "side effects vary with patients" and etc. I always left with the same input: "keep her on the same medications — come back in six months". I was even told that my effort to keep a journal was a waste of my time. Physical therapy provided limited help in combating the stiffness in her arms, legs, posture, vocal issues and her ability to use the walker. When she did use the walker she would walk into walls or furniture — she could not focus.

In 2005 after years of questioning my wife's condition the doctors enrolled us in a University of Pennsylvania Parkinson's study program. Within a week I was told that my wife had more of a problem than just Parkinson's. They contacted our doctor and I was given an appointment the next day. The doctor held my wife's head, told her to follow his finger with her eyes, and within several minutes I was told that she had Super Nuclear Palsy. "Keep her on the same medications and come back in six months".

I obtained a second opinion. This doctor spent over an hour with my wife having her go thru various visual and motor tests. He told me that my wife had Lewy Body Disease and that within six months she would be bedridden, in a fetal position and unable to communicate, that medication would be of limited or of no help to her and that I should stop putting braces on her legs and arms because it would not help and that all I was doing was hurting her. My main focus was to keep her comfortable, give her love and attention. He told me that I did not need to set up another appointment because there is nothing that could be done, but that I could call him at any time. He did say that an early diagnosis of Parkinson's was not unusual.

Within eight months my wife was bedridden, unable to move and could no longer communicate. I tried writing on a blackboard, blinking of eyes, and several other methods which were of some help, but as time progressed her response became less and less.

I had to have back surgery in December of 2006 which meant that I now would have to have 24/7 care giver support to keep her from developing bed sores. In February 2007 we had to have oxygen to help her breathe. Hospice then became a part of her support and without the care givers and Hospice I would not have been able to cope. I did not want to place her in a nursing home. Hospice spent three months and as her vitals began to stabilize once more Hospice was unable to remain with us.

In November of 2008 after spending more than two hundred thousand dollars for care giver support and realizing that my wife was unable to respond to almost any stimulus I elected to place her in a Nursing Home. It was the hardest decision I had to make after 55 yrs of marriage. She is still in the Home — I visit every day. Her eyes are closed for the most part; she receives pureed food. Hospice is again part of her support group at the Home.

Those of us who have gone thru this terrible disease that robs loved ones of their dignity and so much more need to understand that it is important that you take an active role in the diagnosis and care. Even though no two patients are alike and side effects do vary from one patient to another you need to be able to communicate with your doctor about the various changes in your loved one's condition. Do not be hesitant to obtain a second opinion. Above all make sure you have a Living Will that provides your doctor and other involved parties your wishes — "do you want your loved one to have a feeding tube if necessary and how long to you keep your loved one in a non-responsive state — bedridden in a fetal position if her condition deteriorates to a point where they need outside intervention to sustain life............?"

I was interested in a comment obtained in one story that a brain scan was administered and based on the results a diagnosis was made "Lewy Body Disease". I understood that no test was available today that would confirm that diagnosis and only a postmortem brain autopsy would be able to confirm the diagnosis?? [Note from LBJ: The brain scan was probably used to rule out other problems, such as stroke or tumor.]

I stopped using the internet and just plain gave up educating myself until yesterday when I found your site and started to read the stories of loved ones going thru the battle with Lewy Body — God Bless Them All and you for taking the time to put this Journal together.

Update received: February 13, 2010

It is ironic that the day I sent this out my wife stopped eating and the rigidity in her arms and legs is now gone. They are giving her morphine — she looks so peaceful. Thank God he finally looked down and said "enough already". The doctor and nurses at the home are telling me she will be gone within a few days.

I will miss her terribly.

Update received: February 17, 2010

Sadly to say my wife of 57 yrs passed away yesterday the 16th of Feb at 11:10 AM.

Story 2. Received: February 20, 2010

My husband has been diagnosed with LBD. At the end of July 2009 we were told he may have Parkinson's, but probably with some form of dementia. At the end of 2009 a diagnosis of LBD was made. For some years he has had problems with falling, memory lapses, confusion, sleep disorders (night terrors). We first noticed it when he had a bad bout of pneumonia in 2004 — I actually called the paramedics because I thought he might have had a minor stroke. It turned out he had pneumonia but he was totally "off the wall" in hospital with all the medication. They had him tied to the bed at one point.

We had an appointment with our Specialist on the 13 January this year and my husband, on the return journey, was convinced there was someone else in the car besides myself and him. The next couple of days he was very confused and by weekend he was just continuously walking about, agitated, not sleeping. This went on for four days. Unfortunately our Specialist was out of the country and could not be contacted. Our GP was also on leave. So my two daughters and I had total care of him until they returned.

We did manage to SMS our local doctor and he gave us Molipaxin to help with the sleep and agitation problems. We had mentioned Aricept to our doctor because we had been onto the Internet and found that this may be of some use. However, after just one dose my husband became much worse. He needed help with walking, feeding, and he was incontinent and never slept for more than an hour at a time. If he fell, it was a problem to get him up. He is 72 and I am 73, so it was very difficult if this happened during the night, which it very often did. We decided to get help in the form of home nursing, originally just for the day but eventually it was for day and night. This continued for just over four weeks. However, we are glad to say this seems to have passed. He is still confused but is walking, albeit slowly, and is managing to shower and care for himself again. The past four weeks seem like a nightmare.

I have read your journal and the letters from other people with their experiences and this is very uplifting because you do feel entirely alone. The medical profession does not seem to know what to do with regard to medication. However, by trial and error my husband now only takes 25 mg. Trepiline at night, and that is it. However, we have found that taking my husband to a Homeopath has had some benefits. He is now on drops which he takes with his juice. He is much calmer and is obviously better without all the medication.

We do not have the home nursing on a regular basis now. My husband was getting increasingly anxious with them around once he felt better. We have decided to save the home nursing for the bad times. At present he is also sleeping well.

Thank you for your website. It is such a comfort to know that there are people out there sharing the same experiences and that you are not alone.

God Bless you.


Update received: March 18, 2010

Just to update you on the progress of my husband. I am pleased to say that he has continued to improve since I last wrote on the 20 Feb. He still gets very tired and confused at times and unfortunately the Parkinson like symptoms seem to have returned in that he complains he is stiff and finds it hard to sit down and then get up again. However, I am loath to return to the Parkinson's medication because I am sure that it was because they increased his dosage that he went "completely off the wall".

My husband still takes homeopathic drops for the agitation and these, together with the 25 mg. Trepiline that he takes once a day, seem to help him. I am now going to arrange another visit to the homeopath to see if he can recommend anything for the Parkinson like symptoms.

The way my husband is now, compared with those weeks in early January/February, is nothing short of a miracle. He is much more peaceful now, he does not hallucinate and sleeps much better. The confusion, reasoning and difficulty with performing some tasks are still there and I do appreciate that this condition is incurable, but I firmly believe that as little medication as possible is the way to go.

I do hope this may help other families who are in a similar situation.

God bless you all.


Story 3. Received: March 15, 2010

Hello. My name is K and I am currently a niece and primary caregiver to my Aunt T who is 68 yrs old. She has been diagnosed with LBD, Parkinsonism, Scoliosis, Osteoarthritis and Scleroderma for 3 yrs now but we are sure she has had this much longer.

Aunt T is a very active and vibrant lady who loves nothing more than being happy with family and friends and just being with her grandchildren. Today she is not that person anymore. The worst of this disease has started last October when suddenly she thought she needed to go home. But she was already in her home. Then she would go into different rooms in her house and call out the names of people who have been deceased for some time. She would have lucid conversations with these people and me at the same time. She would go around the house and pick up things off of the floors that were not there and she would put her household things in strange places like putting her spoons in the cupboards where the cooking pots were, or her teeth in the bottom of the kleenex box. Her son D (my cousin) lives with her as he had to move in because we could no longer leave her alone anymore. So I stay with her while he is at work from 7:30am to 5pm every weekday. Whenever he calls from work to see how she is doing, she would actually get jealous and she would let me know it. One day while he asked her if he could talk to me she got very upset with him so she threw the phone at me and then threw my purse across the room!! We finally figured it out that she thought D (her son) was her boyfriend, or husband and she was very jealous of me talking to him. Then one day she tried to choke me when he called because I answered the phone when he called, and just started screaming at the top of her lungs for nothing!! Just holding her head with both hands and screaming for help! She would not let me near her and she would then go silent for at least a half hour, just to ignore me. One day she told the mailman that I was the lady that was trying to kill her and if he would call the police to come and get her. The fluctuations of this awful disease are so unpredictable, it reminds me of Michigan weather, just wait a minute and the sun will possibly shine!!

Today there is no sunshine. I have just brought her home from the hospital and we had to call Hospice in as we were having difficulty administering her medications as they are constantly changing, as there are no certain maintenance medications out there for LBD. You have to treat the symptoms!! So now she has lost her ability to walk and has pain in her legs. The Seroquel and Haldol that Hospice has her on are for the Hallucinations and are working for now, but this could change in a week or two. This is how fast this disease progresses. The Parkinsonism has kicked in now with the motor skills fading and Tremors more pronounced. They will be bringing in an air mattress tomorrow for her and she will be taking Ativan with her meds, along with her Sinemet 50/200mg and 25/100mg 2x a day.

Quality of life is most important now as we need her to be comfortable and happy. I think the hardest part of Lewy Body Dementia is the constant change in personality, Hallucinations and Medications. The most frustrating of all is the Doctors who know nothing about this disease, and the nurses who are all non-educated on all of LBD's masks of illusions. I never know who I will be from day to minute with my Aunt, and I never know who she will be having conversations with tommorrow ... when I am there ... and they are not. (Ghosts???)

I will keep you all informed on Aunt T if possible here on this Lewy Body Journal.

Sincerely, K

Story 4. Received: July 2, 2010

Dear Family,

Now I love your mother, too. She was involved with so many of the things I have cared about over the years, but in a much deeper way. She is now one of my heroes. Thank you for sharing her life with everyone, both because I had the opportunity through you to learn about her life, so giving and lived with such elan, but also for the insight you have given me into the course of a life lived with Lewy body disease.

My husband is now in a memory care section of a nursing home. After his last episode of complete disorientation, his doctor told me that my husband could no longer live at home as he exceeds me in size and strength.

The day before yesterday I moved him from a skilled nursing situation when I was obliged to put him on Medicaid, as our finances were depleted. He seems to be adapting to his new "home". I looked at many nursing homes with secure living, a euphemism for a locked ward, before finding a really good one that could accept him and that I could visit without a long drive every day. It has caring staff who have been in their jobs for a long time. His room is large, and looks like a nice hotel room with a sliding door opening out to an enclosed garden. The Memory Unit has a living room, a kitchen, an activities room and a dining room. I believe he will be as happy as he is able to be in this place.

Yesterday the nurse in charge called me to come early as he was refusing to eat lunch or do anything he was asked to do. When I arrived I found him haranguing another patient. Eventually I got him to join a group in the garden as he felt that he needed to be at an important meeting. He was willing to join them after he was given paper and a pen. The group was with a therapist who was "playing a game" which was a memory exercise. My husband continued to believe that it was a meeting he was conducting, in spite of the nurse giving him a shot of Aricept, so he was no longer obstreperous. When the group was ended he was willing to go back into the common rooms, and then had something to eat. The Aricept made his hallucinations worse, but after he ate, he was soon ready to take a nap in a recliner.

So, this is my experience with Lewy Body Dementia. I admire your family for being able to keep your mother in her home. I know that would be my husband's wish. We have five children, but all live in faraway states so would not be able to help me care for him.

I grieve with you for the loss of your dear mother. May you keep her always in your hearts, but may the grief of her death leave each of you in time.



Story 5. Received: July 3, 2010

I am posting this almost 2 years after my mother passed away in Australia. It has taken me this long to be able to face the ordeal. Mum went downhill fast in the end and was independent until 5 months prior to her death in October 2008. This was good for her and for us. Some people suffer the decline of Dementia with Lewy Bodies (DLB) over years.

Not long after my father died in 1999, Mum told us about her 'dreams'. My father first entered her bedroom as a 'real person' not long after he died, and then other 'people' visited Mum in the night but not every night. She was also 'visited' by animals and disembodied body parts, e.g. hands. Most were friendly, but some were threatening. We put it down to a state half way between dream and waking. Mum learned how to remove these 'visitors' by waving her hand at them.

I thought it'd be useful to share some of her final symptoms, or the things that she complained about in the couple of years prior to her death. These may or may not be typical for other sufferers:

Mum was admitted to emergency at hospital after a slurred speech episode that my brother witnessed. They diagnosed TIA and she was admitted, treated and then sent to rehab. She went home with a lot of home support including meals, cleaning, showering, medications in Webster packs and emergency button on her wrist. It rapidly became apparent that she wasn't coping and we were worried that she might injure herself. We took away her car keys. We took her to a gerontologist who diagnosed Alzheimer's and Dementia with Lewy Bodies; a complex dementia.

We immediately began looking for a suitable medium-care residential facility and managed to get Mum into one close to my brother. Mum hated this move and it caused a lot of family anguish to have to leave her there. We rang daily and then realized that maybe we should pull back a bit and let her relate to the other residents and staff and settle in. Nothing we did or didn't do made her any more settled. She still had a lot of awareness and cunning.

We took her out for lunch for her birthday and the next day she went AWOL. She was found walking towards the shopping centre and someone recognized that she was probably from the local home. She was returned safely, but this meant that she was now a candidate for high care — the locked part of the facility. This would have been devastating for Mum and us all. We didn't feel that she was as 'lost' to daily reality as the others in high care, and that she would go downhill faster in there.

Mum had a major behavioral meltdown (tantrum like), and was transferred to emergency at hospital. Mercifully (?) while there she had a severe fit and was diagnosed as unlikely to survive. She was admitted to a ward and we gathered to be with her. She was deemed to be terminal and we arranged for her to transfer to a hospice. The ambulance officers were in the corridor ready to transfer when Mum miraculously returned to life after a bed bath. She was alert and amusing for about three days, but brain episodes started again and she was kept in the ward for two weeks before she was again deemed to be in the final stage of life. We then transferred her to the hospice where she and we had amazing care for the next fortnight leading to her death. Despite the rapid final decline, we can trace the beginning of Mum's DLB to 1999, so the progression was over a 9-year period.

The emotional side of this illness is deep for the sufferer as well as family and friends. The powerlessness to reverse the situation — even temporarily — is intensely heartbreaking. The decisions that need to be made about care (potentially for years), the suspension of one's own life, for me long-distance travel to make decisions and provide care and companionship, facing the physical shell that once housed your parent or loved one are all devastating. To everyone facing this diagnosis, I wish you strength and ultimately to be able to find peace with the decisions that you make in this situation. This was the hardest thing I have ever faced in my life.


CC, Australia

Stories, August - October 2010
Stories, February - October 2009
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