In July of 2015 I was hospitalized for a severe stomach virus. I was in the hospital for 3 days. Following my release, I noticed some annoying facial twitching. I didn’t think much of it at first but as it persisted I told my wife Kim and we met with my primary care physician. My PC’s first impression was to keep an eye on it and if my face began to droop I should get to the ER as it may be a stroke. Within 10 minutes of the office visit with my PC, my wife noticed my face drooping and I was taken to the ER and underwent a series of tests for a possible stroke and Bell’s Palsy. All the tests came back negative but I was still displaying the facial twitching/drooping and additional balance memory and cognitive issues. My PC got me in to a local neurologist and from our first office visit the neurologist was suggesting that I may be showing some signs of Temporal Lobe Epilepsy. I was hospitalized at Community Medical Center in Toms River, NJ where I underwent video EEG for 4 days. The interpretation of the results was that I was showing epileptic auras or spikes. I was prescribed epileptic medication but again my symptoms became worse now including full body chorea form / myoclonic movements. My neurologist advised me to go to the ER. After 2 days in the hospital, my local neurologist began to think my symptoms were looking to be Huntington’s or Creutzfeldt-Jakob disease and I needed to get to a specialist hospital for specialized testing. I was transferred by ambulance to Thomas Jefferson Hospital Neurology Unit in Philadelphia where they performed a spinal tap and numerous other tests for two weeks. They performed an additional video EEG and concluded that I did not have epilepsy. Further investigation by many interns and residents concluded and diagnosed me with a rare Post Infections Myoclonus from the virus I had in July, due to the persistence of the facial and body twitching. They told me that the virus I had in July spun my body into an abundant creation of antibodies that were attacking my brain and in time I would return to normal. I underwent five days of intravenous steroids and IVIG to help jumpstart the recovery.
I returned home and for several weeks continued with the facial and body twitching along with increased memory cognitive issues. When I had my follow-up visit with the neurologist from Jefferson, he told us that he believed his diagnosis was incorrect as I was still not getting better. He suggested I see a cognitive specialist.
At this point my wife believed we needed to get to a better hospital and she was able to get an appointment with Dr. Karen L. Bell, Professor of Neurology at Columbia University Medical Center Neurological Institute of New York. Working with Dr. Bell we reviewed my family history and had additional tests performed including another spinal tap that confirmed I have early onset Alzheimer’s Disease. This conclusion was also made in conjunction with a lengthy neuropsychological examination with Sandra Bell-McGinty, Ph.D. a Columbia Neuropsychologist.
Understanding that I have this disease and what it means to my life and my family, I cannot lose hope! I know that God has my back. He never gives us more then we can handle, always makes a way and he has prepared me for this. I’ve always been a doer and God has given me another opportunity to glorify him. When we last met with Dr. Bell I asked her what my life expectancy was, she told me she did not want to even discuss that with me because they [the scientific community] are very close to a cure. Within the next four to five years one will be available to stop Alzheimer’s and possibly reverse the damage. I soaked this all in for a few days and told my wife I wanted to help raise funds for the research and cure. This is where “Walk To Remember” came from.
Thank you Kim, my angel, for helping me write this.
#ENDALZ #WALKTOREMEMBER #GOPURPLE #EVERY66SECONDS