What were your first signs of declining health?
I was always active with my family and in my career as a Registered Nurse. I started to feel things unravel when I was unable to do things I always did easily. My brain already knew what my heart was telling me — there was a problem.
How did you learn it was Lewy Body Dementia?
Even being in the medical field with access to good doctors, it was difficult to get to a correct diagnosis. Because of the stiffness and difficulty moving, there were considerations of Parkinson’s disease. Seven doctors later, we were referred to Lahey Clinic in Boston. There we finally received a diagnosis of LBD. Now we had a new set of questions. What is LBD exactly? What will the future look like with this disease?
How did the LBD diagnosis affect your lives?
When we heard the diagnosis of dementia we immediately thought “forgetfulness,” but had no idea how completely life-changing it would be. It’s so different from the life we envisioned in our 50s. Everything having to do with function is affected, so even staying home and painting can be a challenge. When activities and outings become overwhelming, we adjust quickly.
When did you learn of the Lewy Body Dementia Association?
When I was diagnosed, my doctor handed us a sheet directing us to the website. That’s when we began using the tools LBDA provides. The Symptoms Checklist was especially helpful right away.
Did you use LBDA as a resource for information?
Yes! We printed out information to pass along to professionals who never heard of LBD. We took it to groups and medical offices so that they could share it with their staff and patients. The forum for caregivers is extremely beneficial. We’ve met others dealing with the disease and their stories have been very helpful to us
Why has your family’s involvement been important?
It’s vital that medical professionals know about LBD and how to treat it. We must raise awareness and funds to help find a cure. Our family hosted our first LBDA fundraiser, “Lick it for Lewy!” Ice Cream/Farm Day Social. It was a wonderful experience.
What is your hope for the future of LBD and its treatment?
Ultimately a cure, of course. Until then, we’d like to help families know there are good resources available to them. Many people in the middle stages of LBD simply do not know where to go for help. Proper care and better understanding of the disease can make things easier on families. There is an LBD community that really support one another, so you are not alone.
What message do you want to leave with families facing LBD?
You have to stay focused on living and come to terms with the fluctuations LBD brings. You can get to the deepest, darkest places. Then the next hour is better, the next day is often better. If I have one message to tell, it’s that it will get better… it always gets better.