You may remember that I was diagnosed with MSA and CBD. What I am now facing as my diagnoses are close “cousins” to these previously diagnosed conditions: Lewy Body Dementia and Progressive Supranuclear Palsy. Lewy Body Dementia includes movement symptoms as well as autonomic issues, as does MSA. Progressive Supranuclear Palsy involves falls as well as serious eye control issues. As I look back, I remember my PET scan results indicated findings consistent with Lewy Body Dementia.
So as I return to write after a hiatus lasting months, I am revealing what has been happening and why Karrie and I have been overwhelmed. I am self conscious about the nature of my diagnosis and what it means. In the meantime, I am not sure how this fits with an existence that is more and more limited. I choose to live each day to its fullest no matter how limited I am. Adapting to the changing picture of my diagnosis isn’t for the faint hearted, but it is doable.
I will end by encouraging you to go to the icon on the right and click on my song, I Will Go On, which says how it feels to be in this situation and wanting to find a way to make these adjustments. — Patient-Online
