Gifts We've Received

This is the time of the year when we think of giving and receiving. We’ve given in many ways. To the LBD community, we’ve given our time, money and talent, as we have for many years. And as always, we receive much more than we give.

We continue to receive many gifts of recognition and appreciation, mainly because of our book, A Caregiver’s Guide to Lewy Body Dementia:

Perhaps the most convoluted gift was hearing a friend tell us about a friend who was amazed that she knew the authors of a book another friend had raved about. (Yes, the word does get around!)

Among the most exciting were these: seeing our book referenced in a recent, very good, book about LBD experiences, hearing a world recognized LBD expert say, “I recommend it to all my patient’s families,” being invited to speak at a Parkinson’s Telehealth conference that reached out to people in five states and of course, the Caregiver Friendly Award that we talked about in an earlier blog.

But the most rewarding to us are many rave reviews of our book on Amazon, the many times we’ve found our book recommended by caregivers on LBD forums and in LBD support groups—and the times people have come up to us and told us how much they appreciated the book. You are the people we wrote this book for. It’s your appreciation that moves us most and inspires us to do more. We love knowing we have helped so many people.

Another gift is the sense of direction this work has given us. We are retired, true, and that has given us the gift of being able to work at what we love and do it at our own pace. But we have a mission, goals, and plans for the future. This keeps us young. We met one of our goals in December when we completed an upgrade to our Lewy Body Dementia Training Kit for facilities and support groups. We improved and brought up-to-date the hour long family and two half-hour staff presentations. Then we added two more mini-programs for when time is short. You can learn more about this on our webpage, lbdtools.com.

Then there’s what we have learned—and continue to learn. Both of us love learning new things, discovering new ideas. And with LBD, something new is always happening—new research, new caregiver experiences, new priorities. And as we learn and change, our work reflects those changes. For instance, we are now focusing on the disorder's progress from PD into dementia, along with all those earlier symptoms. Look for a new book within a year.

A huge gift is the many new friends we’ve made in our work and our travels. Group leaders, past and present caregivers, facility staff, LBD patients, physicians and research specialists—we appreciate you all! One special treat was getting to join an gathering of past caregivers last summer. What stories we heard! What admirable people!

We can also add to our list of new friends, many writers that we’ve come to know through our work—talented people we learn from and admire. People who add perspective and ideas to what we can give back to our readers. We especially appreciate the chance we’ve had to read some books by caregivers that have yet to be published. They were good—we hope that eventually you will get to read them too.

And finally, doing this blog has been a wonderful gift for us. It has kept us involved when it would have been easy to dash off to other projects and forget to return. It has pushed us to stay tuned to caregiver concerns, and to learn more, and always more.