April 2017 Lewy Digest | Lewy Body Dementia Association LBDA

April 2017 Lewy Digest

Journalist Mike Oliver Shares LBD Experience

My recent ‘bucket list’ trip to Europe, arranged by my daughters after my LBD diagnosis late last year brought with it three revelations:

  1. Human relationships, especially with family, are the most important thing in this world.
  2. Going someplace new is a surefire way to let go of personal worries.
  3. I feel in awe, and somewhat guilty.

I was originally diagnosed with Parkinson’s in August until symptoms expanded to REM behavior sleep disorder, mild hallucinations, and noticeable forgetfulness started pointing toward LBD. Only after a battery of tests and specialists was I finally diagnosed with LBD.

Upon hearing my diagnosis, my three daughters planned a European ‘bucket list’ trip for me. The beautiful cities, museums, and festivals were amazing. Cities included Malaga, Spain, Glasgow, Scotland and Dublin, Ireland. The breathtaking views were relaxing and offered a great distraction to my diagnosis.

Circling back to the three revelations: one, traveling with my wife and daughters has fostered an even stronger connection allowing me to see that family ties are the most precious; two, I lost my phone and left my laptop, and I was forced to live in the moment and delve into the histories of the places I visited; and three, I feel in awe and guilty because friends and acquaintances I’ve known throughout my life sent an outpouring of kindness after learning of my diagnosis—and very few people get to experience this while they are in good health.

Now, I hold out hope my diagnosis is wrong but I know in my heart it's not.

Click here to read Mike Oliver's story in full.

Volunteer Spotlight: Paula Rice Biever

I volunteer to help others who find themselves dealing with the challenges of being a LBD caregiver. My dad had LBD when few resources were available. Now, I want to make sure others have the resources they need.

Volunteering has impacted me because I have learned to be a better listener to hear the unique stories they tell. I also provide the network needed for people to find resources.


Caregiver Corner

Make time to sit down and enjoy a meal with your loved one. View it as a time to reconnect and re-engage.

Sharing a meal with your loved one can alleviate feelings of isolation and increase appetite.

It can also be used as a time to observe eating behaviors that may have gone unnoticed.


End of Life Survey

A survey is being conducted for those that have experienced a loss of a loved one due to LBD. The survey will help researchers better understand how people are affected by grief and what they experience.

If you'd like to participate, please click here.