My 3 Brothers: Tim, Tom & Tony
(Royal Oak, MI)
I have lost all three of my brothers. Seven years ago I lost my oldest brother Tim he was 45 years old. He had always been in good physical shape. He was in the Marines & then was a Policeman & than a Master Detective. He started having issues with his legs, they misdiagnosed him with MS only later to find out it was not MS but a very rare decease called Adrenomyeloneuropathy (AMN) which is a rare inherited metabolic disorder that is a form of Adrenoleukodystrophy (ALD), which occurs in young men. AMN characterized by the loss of the fatty covering (myelin sheath) on nerve fibers within the brain (cerebral demyelination) and the progressive degeneration of the adrenal gland (adrenal atrophy). Neurological disability in AMN is slowly progressive over several decades. AMN interests the wider neurologic community because of its similarities to Multiple Sclerosis (MS). We had always been worried as his health declined that he would take his own life, but he had always told us he would never do that. One morning while getting out of the shower, Tim fell & his wife & her parents had to help him up & put him on his bed. We feel that was the breaking point for Tim & within minutes after they left the room he shot himself.
My Twin Tom & my little brother Tony were also diagnosed with AMN. They had also been in the military, but AMN does not have noticeable symptoms until the third decade of life.
I have two sons who were both tested as you are born with this disease & there is a special blood test that they can do. My boys were both negative. The female is the carrier of this disease I tested at 3% & I show no signs. My mother however, has the bad gate, bounce & neuropathy that occur with AMN.
On September 6, 2013 Tony was driving (which became harder as time went on) & was t-boned by a pickup truck who went through a red light. Tony was killed instantly. Then on October 30, 2013 I called the police to do a “well check” on my brother because he had not answered my phone calls or e-mails as he always did. The police found him he had had a fatal heart attack.
The sadness has not gone away for me as of yet. I feel I have this horrible void. When I think about all 3 of my brothers being gone, I have hard time breathing. I don’t think people get it. Even my parents will say something like; well at least they are not suffering anymore. Maybe I am just selfish, because I want to talk to them, see them laugh & cry with them.
Tom & I turned 50 last February 20th. I really would like to curl up in a hole & not come out for this year’s birthday. I wish everyone would just understand. I am sad! I function every day for my family, I work every day but I cry in the bathtub every single night alone.