Colleen’s Story

I am a single 55 year young lady who loves life, and this is my story:

I was diagnosed with LBD September 2014, after being diagnosed with MCI (mild cognitive impairment) in 2013. In August and September of 2013 I had 4 strokes and was hospitalized both times for a few days, and eventually referred to a neurologist. I had 2 surgeries with anesthesia, December 2013 and January 2014. We believe those surgeries may have excelled my disease.

My father also passed away with LBD at 69, after only 6 years of being diagnosed, he was misdiagnosed in the beginning with Alzheimer’s and given medication, and we know what some medications do to those with LBD.

I have an amazing primary doctor who I have been seeing for over 10 years. She had been running specific blood work every 6 months, as I also was diagnosed with Celiac Disease. She also saw the changes in me. After finally being approved for a PET Scan – it showed proteins in my brain – we had a confirmed diagnosis after a long battle. Another neurologist I had seen, said there was nothing wrong with me (which was very frustrating).
In mid-2014 I started progressing with the disease and my work was being effected. I was not able to talk on the phone, or to people. I lost my train of thought. I couldn’t do my job that I had done for 16 years. I started having Parkinson’s symptoms. Balance issues, weakness in my legs, and tremors.

My primary physician suggested I stop working and start spending more time with my family. So, with much prayer and wisdom from those close, I resigned from my position in January 2014 after 16 years on staff at a mega church.

I went to a disability law firm in the town I live, with all my medical records to file for disability. On the outside, I look healthy, but on the inside I am losing it and falling apart. I was denied disability twice.

I happened to be in a chatroom on Facebook with people who are young with LBD. One of the men asked if my lawyer applied for “Compassionate Allowance” when they applied. I found out they did not. I called Social Security Disability and had a wonderful lady help me. She helped guide me through some tough situations and arranged an emergency hearing. Though I was denied disability yet again, I trust that I will obtain it soon. Fortunately, I have had close friends assist me in my financial struggles.

My goal is to share my story to help other people living with LBD the best quality of life.


Apr 21, 2017