"Do I really have dementia?" This is a question that I have been ask many times since my diagnosis of Lewy body dementia (LBD) in June 2012. It frustrates me that people, including physicians, seem to have such limited education and understanding about what it is like to live with dementia. Now, almost three years after my diagnosis, I still have people ask me this question. One of my daughters just last week asked me, "if I really thought I had it". When people ask me this question, I suggest that they come live with me for a day or two.
There is so much lack of understanding about the fact that most people with an early diagnosis of dementia can still do very much. While I am three years removed from my diagnosis, I am still highly functional. I am presently experiencing almost every symptom that is listed on the Lewy Body Dementia Association (LBDA) website. I still have one physician that tells me , he is having a difficult time thinking that I have LBD. I have also suggested to him that he come live with me for a day or two.
One part about LBD and other dementia, is that there are moments of symptoms in the early stages, and they take a vacation for a short period of time and return. People do not seem to understand this. I have decided that most people, including physicians, move from diagnosis to the final chapter and want to wash their hands.
At the present time, I am managing a Facebook Page for Forget Me Not - Lewy Body Dementia, managing my personal Facebook Page as well as my Facebook Page, Lewy Body Dementia - Living Beyond Diagnosis. I manage my website that I started three weeks ago. On this website, there are ten different pages. I share a blog of my journey in living with LBD, a blog about the impact my faith has on my journey, videos, pictures and much more. I provide YouTube vidieo clips by Teepa Snow about dementia care and much more. I am on a national webinar at least twice a month with Alzheimer's Speaks. Twice a month, I am on a national program, Dementia Chats - Ask the Experts. I have been on the national program, "Conversations in Care" and soon will be on Gary Joseph LeBlanc program, "Common Sense Caregiving".
Recently I started a Memory Cafe in Thomaston. Soon, I will be starting another Memory Cafe in Thomaston, Newnan and Griffin. Wendy's Thomston will be my first dementia friendly business. Soon, I will have volunteers going into LTC facilities and helping residents, with or without dementia, virtually interact with their families every week. I will be calling these volunteers, Purple Angels. I go to Virtual Memory Cafes at least twice every week; and, I have mentored persons with LBD, inside and outside the United States through Dementia Mentors. The joy that I receive in doing this, is beyond explanation. I receive far more blessings that I could ever help those whom I mentor.
It is important to me for you to keep all of these comments in perspective. It is not about me. It is about the fact, that with early diagnosis of dementia, a person will most likely have reasonably good quality of life after diagnosis for a whle. Getting this message across is a passion of mine. I believe that with acceptance of the diagnosis of dementia, socialization, attitude and purpose, someone can have a reasonably good quality of life. There are days that I spend no time on advocacy because I feel so bad; however, there are days that I will spend sixteen hours on advocacy because I am at the top of the mountain. The mountain top experiences are an awesome feeling. They propel me to move ahead with my purpose in life.
I often think about the wounded warriors. I think about those that have lost their life so that I could have freedom. I think about those that came home with PTSD or amputations and those that have lost their families because of what has happened. As I think about these things, I am motivated to forget about myself and focus on helping others understand, THERE IS LIFE AFTER DIAGNOSIS.
©2015 Robert Bowles
Robert Bowles, Jr.