The family put our heads together and came up with a list of symptoms. The following are notes given to Dad’s Primary Care Physician in December 2005.
Re: Changes we have noticed in our father’s daily activities.
- Dizzy in the mornings (he is frustrated that none of his doctor visits have addressed this or helped do something to alleviate the dizziness.)
- Very frustrated by all the doctor appointments and his family’s involvement with this. Has been uncharacteristically snappy towards us about it.
- His driving has been affected (especially the last two years):
- He drives very slowly.
- He has had several “mini accidents” such as brushing the sides of cars.
- Weaving so as to be stopped and questioned if he’s been drinking.
- Gets disoriented about which way to go even after pointing out the correct way.
- Has become a very restless sleeper.
- Noticeably disoriented in unfamiliar settings i.e. a family trip, at in-laws house for the holidays.
- One of his daughters has a Neuro-Psych background and after not seeing him for 15 months saw him in August of 2005 and said “he is a different person”.
- In Nov. & Dec. we noticed these things specifically:
- Opening gifts was mechanically difficult.
- He was cutting a block of cheese with the dull side of the knife.
- Couldn’t put a flashlight back together.
- Likes a bowl of milk and rice – poured milk over his rice when the rice was served on a plate.
- Asked what “percussion” is after hearing about his grandson’s drum concert.
- Got agitated at our mother in the car and began driving faster and worse than he has been.
- Confuses which family member belongs to which family.
- Can recite poetry he’s learned clearly.
- Can give directions clearly and in specific detail.
Be as specific as you can be with symptoms and behavioral issues, it will assist the medical team with a diagnosis.
Now that I know more about Lewy Body dementia, many of these symptoms seem classic Lewy. However, hindsight is 20/20 and this was 13 years ago. I wonder if the current medical community would have diagnosed him much sooner.
In the next blog you will read about Dad’s initial diagnosis.