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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Other Stories Introduction

Stories, November - December 2003 (4 stories)

Story 1. Received: November 7, 2003

My now 76 year old mother started showing signs of dementia around 1998, my father died in 1997. The last 5 years he was alive he had done most of the cooking. After reading you journal... I wonder how soon it really started. Our family is not close. I am in CA, brother in Alaska, sis in NH and sis now in OR with my mom. Mom is currently living in an independent care facility.

My mom started with some occasional confusion - the most definite sign was not always being able to comprehend numbers.

She has had doctors and test up the wazu - Parkinson's was the 1st diagnosis, then it was quickly rescinded by the doctor. Everything has been eliminated. But she has not had a test you mentioned SPECT I think it was. There is a PET scan that measures metabolic function of the brain. But the Dr.'s refuse to prescribe it.

My mom can not live alone anymore and my sis in OR wants to go home to TN. So her and my mom are moving.

Whatever my mom has, we are just beginning the path you have been down. I realize the physical ailments may be different but the families' difficulties and emotions will be much like yours and it helps to get a preview. Also listening to the "trial and error" times you had to go through with the medical field is sounding very familiar. Your journal will help us recognize the wrong Dr. sooner and has given us insight into things we might research or ask for. In other words you have built the basic wheel for us.

Thank you for sharing. Good luck and bless you all.


Story 2. Received: November 13, 2003

My mother has LBD, she wants to remain independent, but I feel that is no longer possible. She lives in a wonderful retirement community is [city]. I live in [city]. She is here with me now and I am trying to convince her to move into my home so I can take of her. She strongly objects, saying "I do not want to interfere with your life."

She seems to understand and accept the change one minute and the next she wants to get on a plane to go home.

She cannot manage her finances, she forgets to take her medicines, she forgets to eat and at times she does not know where she is. She also tells me she sleeps on a couch at home because she is afraid. I cannot let her go back to this situation.

I have one brother and one daughter who has looked after her for the 2 years since I have been in Texas. But that situation has changed and they can no longer manage mom.

Help! I need to find a support group, a guide to care givers in this area, a place other than my home for her to live and just general information on how to proceed. How do I get Medicaid, her prescriptions are very expensive.

Is there anyone out there? I feel very alone.

Thank You,


Story 3. Received: December 18, 2003

Dear Lewy Body Journal,

Your Journal is so detailed, that any family with a loved one that has this disease must read it. My father was diagnosed with this disease in 1995, and now at the age of 71 has reached the end stage of the illness. Everything you write is exactly the same stages we have all seen my father go through. At this time, we have had to place him in a home, for the sores he has developed are beyond the care of in-home aids. It seems that as the disease progresses, it also starts to destroy the body's immune system and its ability to heal itself.

During our most recent visit to the V.A. Hospital, the doctor there said that the Sinemet was no longer doing any good, & started the process of taking him off the medication. The rigidity has become the biggest problem in handling him right now, he just doesn't bend anymore. We have also had the discussion of the feeding tube, and his living will is set up much like the one you describe. We all know the end is coming, when, we are not really sure. As you have stated, there is not a lot of information about this terrible disease, and I thank you for taking the time to share what you have found. Please keep the Journal updated with any new information you feel must be shared with others.



Story 4. Received: December 31, 2003


You have provided a great service. After battling with many of the situations that you so eloquently described for the last 6 years, my Mother of 89 was finally diagnosed with LBD after being told it was AD and PD. At least I know these are symptoms common to the disease and not my Mother being "Dr. Jeykll and Mrs. Hyde". As an only child of a widowed mother, I have gone through every step and am now on the razor's edge of moving Mom from her home with a 24/7 caregiver to a nursing home as the situation spirals out of control. My sympathy and understanding to you and all the families who daily attempt to find the best solution for an insolvable problem. Thank you again for your frankness and desire to reach out to others.


Stories, January 2004
Stories, September 2003
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