Welcome to another day of World Alzheimer’s Month, where we feature a #DAI member from the US in our #Hello series for #WAM2018. Thanks Davida for sharing your story.
Lewy Body Dementia and Me
Hello my name is Davida Sipe. I first experienced memory loss, confusion, mind fog and hallucinations when I was 50 years old. I spent over a year and many tests with my neurologist to first obtain an early onset Alzheimer diagnosis, which was changed three months later to Lewy Body Dementia by a neuro-physiologist after in depth testing.
My father also had Lewy Body Dementia and when my DNA was tested, it showed that I carry the highest risk dementia gene so mine is most likely due to Alzheimer running on my mother’s side of the family and Lewy Body Dementia from my Dad.
The diagnosis was devastating at first because I had just recently remarried and I was only 51 years old. I was really struggling with day-to-day activities and could not be trusted with financial responsibilities. My last employer strongly encouraged me to quit since I could no longer handle working in customer service and entering orders so I had been unemployed for several months with no prospects of a job that I could actually successfully complete daily. I had truly hit rock bottom when I got my diagnosis.
My neurologist is a wonderful doctor and immediately placed me on medications to treat dementia, which included an anti psychotic to alleviate the very real hallucinations that I was experiencing on a regular basis.
I also started reading about everything that I could learn about Lewy Body Dementia including support groups like Dementia Alliance International and joined their peer-to-peer online chat group.
Exercising, staying socially active & acceptance
Now I exercise daily, watch my diet, stay socially active with my friends and take my medications. I am not able to work and have been approved for disability to help us financially. Despite not working, I stay with a daily routine of activity to keep myself physically, mentally and emotionally active each day. With my medication, currently my mind has cleared a great deal and I only occasionally suffer from hallucinations.
I feel your state of mind and willingness to accept your disease aids in fighting the progression. My father was not so lucky. He refused to accept his diagnosis and would not take his medication to fight the symptoms until he was in the later stage and could no longer refuse them. At that time the medication made very little difference in his mental state. I watched him deteriorate until he was almost unable to swallow and had pneumonia from aspirating his food. A couple months later, he suffered a major stroke and was taken from us…… I honestly felt that his resistance to the medication only made his condition worse so I believed it necessary to accept my diagnosis and to work with my doctors to fight this horrible disease.
Yes, at nearly 53 years old, I have days that the weight of my disease hangs heavily above me but I still fight to stay me. But I have a loving husband, two children and now two grandchildren to fight to stay as clear minded as I possibly can and so far it is working.
I am still me.
Davida Sipe © 2018
DAI’s vision is “A World where people with dementia are fully valued and included.”