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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Stories, February - March 2005 (5 stories)

Story 1. Received: February 8, 2005

In 1995 my mother was diagnosed with Parkinson's. We had noticed that she was starting to have a slight tremor in her right hand and it concerned us. We made an appointment at the doctor and he did in fact diagnose her with Parkinson's. She and my father were divorced a few years earlier and she had recently had her house flood. She had been under a lot of stress. Her mother had also had dementia. She accepted the diagnosis and continued her busy life. But, on 9/11 she started showing signs of hallucinations. She thought President Bush was in her house and talking to her. She became very frightened and at eleven at night went down to a neighbor's house and they called my brother who did not live far. He took her to the doctor the next day. He was a neurologist and had been the one to diagnose her years before. He showed us where he had written in her chart that he suspected Lewy Bodies but did not know, only time would tell.

We tried many different meds and she had to stay with relatives and leave her home she knew so well. We were all so frightened. She really got bad. She would walk around all night, go to the bathroom and was so confused. We had to have caregivers come in and that was so expensive. Finally we decided to move her back home and have caregivers around the clock. Her doctor put her on seroquel and that seemed to help her sleep and with the hallucinations. She was also on Aricept 5mg. and later he put her on levodopa which helped with the tremors. She seemed to get so much better. We could not believe how much the medicine helped.

It has been two years and she has just about gone through her money and her social security checks only cover her medicine. It has been almost 10 years since she was diagnosed with Parkinson's and she is starting to get worse - the hallucinations are coming back and her energy level is about gone. She has not been good at having conversations for a long time, spacey and her memory is getting worse and now she thinks she is sometimes in someone else's house. We moved down here about 4 months ago from about a 4-hour drive, but it has been so hard. My kids are 12 and 8 and are very confused about her actions. This is an awful disease. We don't know what to do. Today she heard someone screaming and went down the street and told a neighbor that she called the police. The neighbor brought her back (I was just upstairs on the computer). I want to keep her at her home, we moved down and sold our house to help out since her money is about gone. We have been paying her bills, since we had to refinance her home to pay for caregivers. But even that is about gone.

Story 2. Received: February 16, 2005

It all started about 9 years ago when I thought my mother had had a stroke. She was then 80 yrs. I did not witness anything, just the aftereffects, and to me it screamed minor stroke. I called my older sister to come and see for herself and she agreed with me.

She had a slight tremor in her hands and she had slowed considerably. (Before this she was up around 8 am, 'whizzed' around doing housework, cooking, etc., very rarely resting, and did not retire until at least 11 pm.) Now all movement was slow, cleaning was not so important to her, but she still cooked for herself and my dad. She had also mellowed considerably in nature.

Over the next 3 years her physical condition showed definite symptoms of PD [Parkinson's disease] and she was diagnosed as such when she was 83/84 yrs. and put on PD medication. This definitely checked the hand tremor. As her gait worsened her meds were increased and I have to say I was happy with the diagnosis and treatment at this time.

It was around this time that my sister and I would notice that she said 'odd' things and made stupid mistakes, although my dad always had an excuse for such lapses. Another year and the falls started, she would appear to trip over her own feet. Luckily for some time she never really hurt herself. At the routine visit to the PD clinic her meds were increased again. Her blood pressure was checked and it dropped when she stood up, the doctor said this was the probable cause of so many falls. I pointed out that she had always had low bp, so did I and both my sisters. I felt they took no notice of this.

She was about 85/86 yrs. when her speech became noticeably affected. We couldn't understand a lot of what she said and when we could it often made no sense. My sister and I were now certain there was something else going on, but we had no idea what. She was now on 2 PD tabs x 4 times a day and it really made no difference, but my dad was in denial and not only made all sorts of excuses for her, but even covered up so I would be unaware. I was there one lunch time when she fainted and then he told me she had been having these 'turns' on a regular basis for some time. He also thought he should have her sight tested as she occasionally 'saw' things and tried to move objects that were not there.

In December 2002, shortly before her 87th birthday, she had a bad fall (I am certain she fainted) and she had to have several stitches in her scalp. A week later she was talking gibberish, hallucinating and could hardly move. She did not appear to know who we were either. I thought she was delirious and called the emergency doctor. She was admitted to hospital and stayed there for 3 weeks.

The doctor really did not know what was wrong. Blood tests were done and the doctor asked me if I thought my mother could be a secret drinker, or had she been promiscuous! He apparently thought she might have hepatitis. I am sure you will not be surprised that I asked for another opinion. She was then moved to the PD rehab ward and with temporary changes to her meds she improved enough to come home.

Over the next year she became stiffer, her speech became worse, she made more and more 'mistakes' in respect of time and where she was, and she was 'seeing' people, dogs and cats, children running about most of the time. At this point she was aware that these hallucinations were not real. My dad took her to the doctor but never told her about these symptoms, and her meds were changed to a heavy dosage of levadopa. I told my dad he must tell the doctor about the hallucinations. When he did she put it down to the meds and dismissed him. He then told me that she was up and down all night long wanting the toilet and thinking that people were watching her. He also said that she did not appear to know him in the night, thought he might be her granddad.

I had always gone to the PD clinic with my mum and dad, but had always taken a passive role so as not to demean them in any way. However, on the next visit in August 2004 I took control and gave the doctor a list of my mother's symptoms. She immediately said she felt it could possibly be DLB [dementia with Lewy bodies] - this was the first I had ever heard of Lewy bodies. She made another appointment for 4 months and asked if I could keep track of what was happening.

I got straight on my computer and almost immediately found your website. I downloaded and gave a copy to my sister. It helped us enormously. We were both so touched.

During these 4 months she was very lethargic, slept most of the day and was awake most of the night. She couldn't wash herself or go to the toilet on her own - although I will say that her personal hygiene had been virtually nonexistent for some time. When she was awake she just sat and stared. If she did speak, no sense could be made of it. She lost her balance and we had to put her in a wheelchair.

We returned to the PD clinic at the beginning of this year and on reading my 'report' it was decided that she most probably did have DLB. On their instruction we have gradually weaned her off the PD drugs. We have had an initial consultation with a psychiatrist and he has confirmed the diagnosis.

Since coming off the drugs there has been a marked change in my mum. She has 'woken up'. She has become aggressive, argumentative and very awkward! She still has to be washed and dressed, but she can get up and walk around, although we have to be vigilant because she cannot do as much as she thinks she can. She thinks she is getting better. She has no idea that there is a mental problem. Her attention span is very short. She talks nonsense most of the time. If the tv is on she thinks the people are in the room. She thinks we have moved her without telling her, this is not her home. Everyone is plotting and watching her.

From what I have read it would appear the disease runs its course over some 5/6 years, but where do I start counting from? When did it become DLB? Or has it always been DLB? I do not think anyone knows.

Story 3. Received: March 19, 2005

Dear Journal,

My husband was hospitalized for what we thought were psychiatric problems in June 2003. Upon release in August 2003 he had severe tremor, shuffling gait, and rigid muscles. He was also experiencing memory problems, episodes of confusion, and periods of agitation.

His local psychiatrist was not willing to try any medication adjustments due to the extended time it had taken to stabilize him. He had many adverse reactions to different psychiatric medications.

We consulted a local neurologist whose credentials we liked. A few years earlier we had a consult with another neurologist who said what he had was "essential tremor." The new neurologist sent him to Kirkland Clinic which is affiliated with the University of Alabama in Birmingham for an additional consultation, neuropsychological testing, and a 24 hr. EEG. He also had a MRI and CAT scan performed at other facilities. We have just been informed (March 18, 2005) that his diagnosis is Dementia with Lewy Bodies. The neurologist said to be sure I had a Durable Power of Attorney (I have had since last August) and to accept the fact that for my safety and our children's he may require institutional care. My husband has threatened to hurt himself or us during periods of agitation and frustration. Before the illness he was a kind, gentle person who was always helping others.

My husband was self-employed. He has had no income for over a year. We have been unable to get his Social Security Disability started. He has the medical insurance from my job, no Medicare, no Medicaid. I try to work full-time (I have had to use all my leave for his care); I am not eligible for my full retirement for 7 more years. We have two children, 18 (senior in high school) and 19 (disabled by a serious mental illness). They are having problems understanding why their father acts the way he does towards them and the severity of his physical problems. I have tried using a Home Care Service but have not been satisfied with the help we have received. My husband sent two different aides away, for good reason.

Where do we turn for help and assistance?


Story 4. Received: March 20, 2005

At about 57 my mom said, "I must just be having a senior moment as I think my memory is starting to be funny at times." I think all of her friends laughed with her and said they thought they have the same thing. My mom decided she needed to move for the first time in her life to have her dream and she picked Las Vegas, NV. We are all in Chicago. So Mom seemed happy being in the desert for about 3 years and we saw her two times a year due to new babies. We really all blew off the idea that at 60 she no longer wanted to drive a car. She said with all the new roads and construction in Vegas it was hard because they did not have clearly marked roads.

About April 2002 we knew something was wrong - she was not herself and seemed to be argumentative and negative. She cried and we wanted to take her to a doctor - she refused. We finally got her to one in July and they said to put her in a nursing home. We were shocked - Mom is 61!!! One neurologist said she had Huntington's which was very devastating but then two other doctors said no to Huntington's. She is having hallucinations, still walking, bathroom okay. We moved her back to IL in October 2004 with her companion within 10 mins of myself and brother. She does not qualify for Medicare and her insurance is very shaky since she moved out of LV now. Of course we are not sure if we are doing the right thing for our mom. Does anyone know the life expectancy and exactly how one dies from Lewy body? She was diagnosed last week with this disease and all her symptoms seem to fit for the first time. They put her on Seroquel???? She has been more argumentative than ever with these nonexistent people she sees and talks to. Any help would be appreciated.


Story 5. Received: March 26, 2005


Let me begin by telling you just how helpful your site has been to myself and my roommate and her family. It's been so wonderful reading all the stories that are posted here and to see just what we are dealing with here.

My roommate's mother, H., is 84 and has osteoporosis and has had some light confusion over the past few years. Living in a rural Kansas community, she was always treated by the local general practitioner. She has been having the hallucinations for several years, mostly at night when she awakes. The GP prescribed all kinds of things and basically kept her overmedicated and never tried to find the cause. He stated it was just old age and it is to be expected.

Well, as time progressed, her hallucinations also did and she then began falling in her home quite frequently. Small bruises and soreness were all she received, thank goodness, but her falls were happening at a more frequent rate.

After one fall, the GP prescribed Oxycontin for her pain and after only taking this for a couple of days, she was completely out of her head with massive confusion and hallucinations and delusions. The family all was concerned and she was just a mess.

My roommate, S., is a nurse and told the family that after looking up drug reactions, discovered that her Mother was having a reaction to the Oxycontin and they quit giving it to her. It still took several days for it to get out of her system however.

The family then took her to a geriatric specialist in a large Kansas city and was told she had Alzheimer's disease. She was put on 5mg of Aricept and things seemed to go along pretty smoothly for a few weeks.

The 9th of this month, March 2005, the mother came here to visit her daughter and me and was walking fine and was having no hallucinations or delusions and then on the next day, she fell and broke her hip in three places. This required surgery and she is still in the hospital.

Her confusion and hallucinations have worsened drastically after breaking her hip. A neurologist was called in and after many tests, he told us that it was Lewy Body and not just Alzheimer's. Since she cannot put weight on her hip for 5 weeks, we do not know if her walking is still affected, but we suspect she won't be walking anymore. The specialists here have told us today that she is in the last stages.

Her eating has gone from a great appetite here on the 9th to hardly eating anything at all now. We have been taking her all her favorites from takeout restaurants and she won't even eat these. Her hallucinations and delusions and panic attacks are coming at a more frequent pace now and seem to last longer each episode.

It's so hard to believe that in less than two weeks, she has progressed so rapidly.

The doctor put her on Seroquel 25mg but after only 4 days has taken her off it, because he seems to think she is not handling it well and we agree. She had her Aricept increased, but now is back down to the 5 mg.

The family was deciding on when she is discharged to bring her home here and we would take care of her, but after reading and talking to the doctors, we have come to realize that H. is going to need more care than we can safely give her. This decision has brought guilt, sadness, and a whole wide range of emotions to the surface. But, arrangements have been made to get H. into a top-notch senior facility here where she will get good care and by people who are trained in giving this care the proper way.

Her little bones are so brittle, the surgeons stated during the surgery on her hip, they could push the pins in by hand.

I know from reading about this disease that it is a cruel one, as all diseases are. It robs the patient and the family of a once life-giving force and leaves us with this loved one that looks familiar, but is a stranger on the inside.

Sorry this post is so long, but I just wanted to share H.'s story and hope maybe it will help others who think their loved one might have something more going on than just old age.

Thank you for letting me talk and also thank you once again for this so helpful site.

God Bless You


Stories, March - May 2005
Stories, January 2005
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