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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Stories, September 2003 (4 stories)

Story 1. Received: September 13, 2003

Finally I have found someone whose loved one has Lewy Body.

My husband was diagnosed in August of 2002; however, he had blatant symptoms (hallucinations, delusions,etc.) for a year before that.

He is 6'3" and weighs 142 lbs. He is aspirating into a lung. Since December his mobility is very limited, mostly wheelchair and able to walk some with walker in the house.

For the first year and a half his cognitive awareness was very poor at times and then it would almost seem normal. For the last 6 months it has been amazingly good.

He is on Exelon, Sinemet, and at bedtime Trazadone, and Remeron.

I thank you so much for this web site. Thank you, thank you.

I will keep you in my prayers as I hope you will keep us in yours.


Story 2. Received: September 15, 2003

Thank you...I don't know how I ended up getting this message about your journal but I certainly am glad I did.

My Dad had dementia (he passed away in 1998). He was diagnosed in 1990 at the age of 62. In retrospect, signs of his illness we can trace to 1980. One neurologist told us that he had multi-infarct (mini strokes) dementia. I accompanied my Dad and Mom on the many trips to the "world famous" neurologist in Massachusetts. Only once he mentioned Lewy Body dementia. He did not give us much information except to say that Dad's symptoms mimicked Parkinson's. At that time I searched for more information and found very little. My Dad's situation and your mother's are almost exactly the same. Unfortunately, my Dad could not be cared for at home. He spent the last 5 years of his life in a long term care facility. For my mother and my brother's and sister's (7 of us) it was a continual grieving his loss. I am a nurse and now I work with elders in Adult Day Care. I love my work and I now have a better understanding of what families are dealing with. You're so right that people who have not experienced this cannot fully understand. Thank you again.

Story 3. Received: September 23, 2003


Thank you for your journal. So much of what you have documented is exactly the same experiences we have encountered with our mother.

My mother was diagnosed nearly 20 years ago...told she had Parkinson's Disease. Over the years, we treated her for it, and while she never seemed to get the tremors, we just assumed she had a mild condition. Then 4 years ago, we were told that she also has Alzheimer's Disease. She added Exelon to her cocktail of medicines and that created endless problems. She has been on Reminol now for almost 3 years. We changed doctors two years ago and that was the best thing we did. This doctor specialized in AD and had done much research with Lewy body. After several visits, she told us that she was quite sure that mother had Lewy body. We continued on the same path with all the drugs.

I think your mother may have had better success if she had been treated immediately with PD drugs as well as the Aricept. We are amazed at how well our mother has managed even though we do see a continual progression of the disease. She is 78 and is at home with the help of my dad and 2 other paid staff. She is in a wheel chair most of the time, but we do try to get her up on the walker when possible. She has also gone through many PT sessions over the years.

It is good that all of your family is involved with her care and the decision-making. We have incorporated that same attitude with our mom.

Good luck. Please feel free to communicate if I can be of any help with the experiences I have had.


Story 4. Received: September 25, 2003

To the family of "Mother" and writers of "Lewy Body Journal"

I have just today, while at work, found your wonderful website on Lewy Body Disease, and have found it to be absolutely compelling reading (particularly the journal), because of the similar diagnosis and illness of our own mother.

Your journal is the most touching, sensitive, and yet forthright, account of the progression of your own mother's Lewy Body disease. But it is also the most informative and helpful document for us. Your website will assist us in our attempts to understand this illness, when there is so little information about it available. This understanding will help us in our attempts to get the best possible outcomes for our mother. Thank you.

I am the eldest of four brothers (in our late 40s to mid 50s), and our widowed mother is 82. We all (brothers, wives, children) live in [city], South Australia (except for my twin brother and his family who live in [city]). We are a close-knit family and all keep in touch regularly. Mum, at her own wish, lives alone in an "independent living unit" within a large church retirement village complex. This complex has tiered care available (including hostel accommodation, nursing home, dementia ward, hospital) if and when the need arises. But since mum's diagnosis about 18 months ago, we have been really concerned about what is in store for her.

For at least a year before her diagnosis she showed developing signs of unusual behaviour, memory loss, auditory hallucinations, and physical frailty and tremors. She now has government-subsidised carers calling twice a day to help her with medications, personal hygiene, some household chores, etc., and has meals delivered and a cleaning service. We all visit regularly, and the three local daughters-in-law help particularly with shopping, medical appointments, and lately, her developing incontinence problems. We pay her bills, but mum is always agonising about attending to her "paper-work". She was an active, lively, intelligent, musically-talented school-teacher, and later sub-editor. She was loved by many people. Before Dad's retirement as a farmer many years ago, she helped him run a successful wheat and wool farm in Victoria. Dad was in many ways her quiet "backbone". He died in 1987.

The most hurtful thing for me is that she is alone so much of the time. She has a few good female friends who get her out, although this happens increasingly less often, and we visit and take her out when possible. However she walks with great difficulty now, using a walker. She doesn't discuss it with me (although we are close), but she does talk with my brothers about going into the nursing home some day. This seems to be the only alternative, as she is close to needing much more hands-on care. Our fervent wish is that the nursing (and dementia) care will not be unbearable for her. Beautiful new facilities have recently been built for this purpose at the complex, and the care seems to be good. We also happen to be friends with the Director of Nursing there (my wife was a nurse and nursing administrator). There doesn't appear to be an alternative.

Thank you again for articulating your story, and the issues this illness raises, so well, and for making it available to all.



Stories, November - December 2003
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