By Leslie Rivera
It was traumatic when the tests were completed. My mother was upset knowing she didn’t do well. We never said the word Alzheimer’s, just memory loss. Although in her case, it was not all that off putting since she had a tendency to forget unimportant details.
My involvement with the Alzheimer’s Association Southeast Florida Chapter began with education. I wanted to learn as much as possible about the disease. At an Alzheimer’s conference at Florida International University I met the local public policy director and, having done public policy in my work life, thought this was an area where I could make a contribution.
I started traveling to Tallahassee once a year for Rally In Tally where I met and worked with legislators on state issues and priorities. I also began attending the annual Alzheimer’s Forum in Washington, D.C. and learned about the federal priorities each year for the Alzheimer’s Association. At the time, I was amazed that I was the only public policy volunteer from Coral Gables. However, I was soon joined by others and a team was formed. It has been so amazingly helpful and hopeful to have the support and encouragement and kindness of the Association’s staff as well and fellow volunteers in this journey.
I have volunteered for many organizations for years, and I have to say I have never met with the outpouring of care I have always received with the Alzheimer’s Association staff and volunteers. They really do understand the hardships of the disease. Each case is different, not always in the loss of memory alone, but in how the person is affected and the family react. I have had the privilege of meeting so many wonderful people all over Florida and listening to their experiences, their trials and tribulations and suggestions of help. The same occurred at the national Forum in D.C. where I met people from all over the country who are touched in one way or another, either through a family member or friend with the disease.
I am happy to say that since the beginning of my journey with Alzheimer’s in 1998, so many more individuals have pertinent information on the disease, so many legislative priorities have been met, and there is so much more awareness of the disease. However, there is much left to accomplish. We still do not have a cure or a way of slowing down the disease.
I encourage all of you to get involved, whether or not you have a family member or friend who has been diagnosed (you would not believe the difficulties for some in even getting a diagnosis).
I know at first things do seem overwhelming and time is so precious. However, I was also able to be of more help to my mother as I learned communication skills that kept us together until her passing in 2005. The 24/7 Helpline at 800.272.3900 is a great resource and I have found the support you will receive to be unparalleled.
The Walk to End Alzheimer’s every year is so fun, the educational programs are first rate along with the support groups, the legislative priorities are ongoing every year, and the Longest Day event (held every June) is a real winner. The list does go on and on for ways to be involved.
Please get involved. We need you. I assure you it was the best decision I ever made and I will continue for as long as I can do so. I would be thrilled to welcome you aboard! Visit Alz.org/Volunteer or call 800.272.3900.
This is a great post. Thank you for your steadfast dedication.