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Showing posts from May, 2018

I Don’t Want to Be the Person I Find Myself Becoming

I’ve been debating for some time whether I should write this post. On one hand it seems whiny and self serving, but on the other if it helps one care giver understand why their LO may recoil at their once so welcomed touch, then it will be totally worth while.

Next Stop: The Undiscovered Country....

I am not even sure how to open this. It will be unlike anything I have written
before. For some this may bring fear and horror, for others it may represent
hope or at least a sense of hopefulness. Is hopefulness a word? Well it is this
Much of what we patients write about here typically involves trying to describe
what the world looks like on the other side of the mirror, perhaps in an attempt  at building a common understanding between the caregiver and the patient. This
will not be such an article. That said, this may be the most important thing I will
ever write.
As of this writing, a common assumption about dementia is after it passes the
point of Mild Cognitive Impairment (if I ever meet the person who coined that
expression I will kick him or her right square in the seat of their pants) is that  the patient is basically mentally "gone", "checked out", etc. This is convenient for
others like caregivers so they might feel less bad about what their charg…

When the time comes...

If caring for my parents during their time with dementia taught me anything, it taught me the importance of having a plan in place for how you want to live your final days weeks, or months. A time when many dementia patients may be totally unable to communicate their wishes, needs, pains, longings.... Without that plan you may suffer needlessly, be subjected to tests and procedures that will add nothing to the quality or longevity of your life, and your LO/caregivers will be placed in an impossible situation trying to make decisions for your care and comfort based on what is medically best for you and what they “think” you would have wanted were you able to communicate your wishes, leaving them to second guess every decision, every move they made til your demise for the rest of their lives. Your physician will be forced to use his/her best judgement without ever knowing your wishes.

LBD vs Alzheimer’s & Parkinson’s Dementia

I’ve often wondered about the cognitive awareness of patients with differing forms of dementia. My most intimate knowledge of dementia lies in Lewy Body Dementia with a slight knowledge of Vascular Dementia. I have had little if any true contact with anyone suffering from Alzheimer’s Disease.

The question that has been and remains on my mind is do all dementia patients realize the degree of cognitive decline they have suffered. This question comes to my mind because of the differences in the types of dementias.

The news gets Robin Williams' tale wrong.....again!

Greetings, Jeff Cobb here. As observed in this ham-handed bit of reporting by Fox News on the trials and tribulations of the final years of Robin Williams, the mainstream news continues to misreport this disease. And before you start thinking about non-mainstream news I would remind the gentle reader of two simple facts:

Let me ‘Splain

The other nut

My name is Randy Conn. I was diagnosed with dementia with Lewy Bodies just over one year ago but I knew in my soul that I suffered from this condition for much longer. I was well aware of the signs and symptoms of LBD because both my parents died from complications of LBD. One was diagnosed with dementia with Lewy Bodies and the other with Lewy Body Dementia but the diagnosis makes little difference. By the time they had reached the moderate-late stage there were few differences in their conditions so basically the diagnosis became a matter of semantics.

It may seem strange but I consider myself lucky in that I did have an intimate knowledge of LBD and therefore was able to point my physicians in the appropriate direction and probably saved myself years in the diagnosis. Years of possibly taking the wrong medications, medications that most likely would have done more harm than good. It saved a lot of unnecessary testing for other possible conditions. I’m lucky because the average pat…

Living with Lewy Bodies

Greetings and welcome to Living with Lewy Bodies. 
What are Lewy Bodies and why should I care?
Lewy bodies are simply protein deposits in the brain named after the dude who saw them first. When these protein deposits damage the part of your brain that controls motor skills, its Parkinsons disease; when they hit the cognitive functions, its Alzheimers. Hit them both and you have Lewy Body Dementia. This is an over-simplification but it gets the point across.

Note: The way the damage hits each individual is pretty random as is the severity. For reasons that escape me, doctors like to put a different name on it if the dementia hits before the motor skills go; thats "Dementia with Lewy Bodies"; otherwise its Lewy Body Dementia. No I don't get it either and will simply use the term LBD to refer to all because regardless of what starts first, we all end up in the same place.

Lewy Body Dementia is the second-most prevalent form of dementia after Alzheimers. What makes that fa…