I was a musical nerd in school. Mostly A’s, a few B’s, played trumpet from 5th grade through 8th. Trombone section graduated and had no one in high school to play. I learned piano at the age of 9 so I knew the notes of the bass clef. 2 members of the graduating class worked with me over the summer teaching me how to play the trombone and for the next 2 years I was the trombone section until some more could come through the grades and join me. I won a lot of awards, including the John Phillip Sousa award, Who’s Who in Music, and was only the 3rd person ever to be given a lifetime honorary membership to the high school band.
But I hated school. I got a partial scholarship but I didn’t want to go to college. I had already taken 11th grade English after my sophomore year so that I could skip a year.
Senior Year career day. US Navy made the Nuclear program sound like something I could enjoy. See the world, free education. I took the testing and passed. I was in the recruiters office when he mentioned that 80 percent of my time would be spent in a submarine underwater. Now, I’m not claustrophobic, but the thought of spending that much time under the water didn’t appeal to me. The US Army recruiters office was next door so I walked out of the Navy office and into my future. When he found out that I played musical instruments he had me try out with the trumpet, and I was accepted. Fort Jackson here I come.
Basic Training wasn’t so bad, and my AIT training for the music was at Little Creek NAB, Norfolk, Virginia. It was there the trouble began.
Like I said before, I was a music nerd in school. Never really had a girlfriend, so when a girl befriended me in the new school I didn’t know how to handle it properly.
I spent more time with her than I did with my practicing as required by my sergeant/section leader. Eventually I was expelled and sent to Fort Dix, NJ to Mechanic’s school. From there I was transferred to Babenhausen, West Germany in 1979. I did ok, and made E4 on the anniversary of my 2nd year in service, the earliest possible date at the time that you could be promoted to that rank.
I was in a Field Artillery unit and we did a lot of training missions to practice scenario’s at a place called Grafenwöhr. Dirty doesn’t describe this place. The mud gets caked on and has to wear off. I did 8 tours in that place.
Hell on earth is a mild designation.
The last of those 8 turned into the beginning of my descent into hell. We were on maneuvers and I was riding in the back of what is called a deuce and a half. It’s a cargo truck that we used along with 5 ton cargo trucks to move equipment and soldiers around. Our truck had a box built onto the back with 2x4’s and wooden panels. The driver lost control on this mission and the truck went into a ditch and rolled. I was thrown onto the side of the truck and my spine and head hit the boards on the side.
I woke up as I was being pulled from the truck and loaded onto a field ambulance.
The doctors at the hospital treated me, diagnosed me with a congenital back issue that was not diagnosed before, and a nerve root impingement at L5-S1. No mention of any brain injury was ever made.
I was told that I could no longer be a mechanic and assigned temporary duty as a parts clerk. 8 months later it was decided that I could no longer function in my unit and I was given a medical discharge, and the VA awarded me service connected disability for the spine. Still no mention of the brain issue.
That was 1981.
Fast forward to 1994, March 9th specifically. The math teacher at the high school had to have surgery and was going to be out for a number of weeks. I was driving a school bus full time and substitute teaching so it was decided that I would cover his classes while he was out since I was especially good at math.
That day I was in the calculus class, the students were taking a test. All of a sudden my left side went numb. I couldn’t move, couldn’t talk. I somehow got the attention of one of the students and they rushed to the office and the assistant principal came and grabbed me up, rushing me to the nearest hospital.
A mobile MRI trailer was brought in the next day and the neurologist and their team sat down with me the following day.
Multiple Sclerosis. He said it was a “clinical diagnosis.” I didn’t understand what that meant at the time. He wanted to do brain surgery to explore further, but after discussing it with my wife, we declined. I was discharged 2 days later to go home.
5 months later I was back in the hospital, unable to walk again after having recovered in a short time. This time it would take me 4 years to push the wheelchair away for good.
A year after that my marriage would be dissolved due to my wife seeking comfort in someone else’s arms.
Needless to say, I spiraled. The drinking started more heavily and my carelessness accelerated. The only thing that saved me was my mom’s kidney’s started failing and she was going to need dialysis. She eventually passed because of it, and as that was the last of my support system, I withdrew from the world.
In 2005 I met a lady that I married, but it was not the best choice. I believe I did it only trying to latch on to something, anything that could fill the void in me.
In 2008 I tried to take my own life. I lived, but it was a beginning to my mental decline. I divorced that wife and moved to Florida. I was hospitalized 2 more times in a mental ward with manic depression and placed on a lot of strong medicines to try and help control it. I became a zombie and for 2 years I took the meds before deciding that I couldn’t live like that any longer.
I had moved to Florida after trying the suicide attempt and I knew that I couldn’t stay there any longer. I wanted to come back to SC and see my son who is handicapped because he was born prematurely. I had decided to end my life after I saw him one more time and be done with it all completely.
I came back to SC and got a room by the week at a local motel. Seeing him made me happier again. For some reason suicide was put on the back burner and I decided to live again. I eventually met a woman who is now my wife. Since 1994 I had been on SSDI, eeking a living on my VA and SSDI stipend. She knew about my background and loved me anyway, accepting me as I was.
In 2015 I was able to finally find someone who would give me a job. 21 years on disability. I was sooooo ready to go back to work. That was a temp job that eventually turned into a full time job.
I was an analyst in the Accounts Receivable dept of a very large corporation. I was loving my job and had moved up to leading my own team.
Then more changes. I started noticing that I was having a hard time concentrating at work. Tasks that were easy to me seemed to take me longer than they should. We were building a new distribution center and there were a lot of headaches and pressures that came with it. I went to my boss and she said she thought it was just that we were all overworked and when things settled down, I should be fine.
Well, it wasn’t.
Just a few months later I had a seizure. June 2018 found me at the Neurologists office being told that I had a dual diagnosis. Early Onset Alzheimer’s and Normal Pressure Hydrocephalus. I have a family history of Alzheimer’s, so she said that I was most likely bound to get it, but that I seemed to have a TBI that caused the NPH, which causes dementia also. I went to the VP of my department and told them what the doctors said, and to my surprise, they wanted to know what they could do to help. Well, they weren’t kidding. My workload and work hours were shortened and for 9 months it seemed that I might be able to still stay with my job. I still had bad days, and the headaches seemed to be pretty bad at times, but large quantities of Mountain Dew seemed to help keep it at bay.
March 2019 however was a turning point. I was no longer able to complete the tasks that I was now assigned to, and my employer put me on disability. 2 months later my neurologist decided that it would be best if I was shunted to help relieve the head pain.
After finally getting to work again for 4 years I felt like my world had ended, especially with this diagnosis. I became involved in the local chapter of the Alzheimer’s Association and was eventually nominated to serve on the Early Stage Advisory Group for the national office. Myself and 8 other members from around the United States, who like me have some form of dementia, served our 1 year term of service and are now Alumni members of the group.
During that time I was able to tell my story in many ways. I was a guest speaker at a screening of Too Soon To Forget in Charlotte, NC. I was also a guest speaker at the Alzheimer’s conference in Columbia, SC along with my wife who shared her experience as a caregiver. The Wall Street Journal did a full page article on me in their Lifestyle section, Guideposts has featured me and some of my fellow ESAG members. I’ve been featured along with my wife in numerous blog posts along with more localized papers and magazines. It gave me a renewed purpose and a sense of direction.
I really miss working, but I have a new mission. I feel like I was misdiagnosed for a lot of years. I believe what happened to me in 1994 was just the beginning of my problems. I hear so many times of veterans with TBI’s and I suspect that I’m not the only one who has been down this road.
I still do not have a service connected disability rating for the TBI, though I am fighting that through the system now. I will admit that I’m worried as to how long I can continue fighting though.
We went to the Neurologist for a checkup last week and he told my wife that he can see quite a cognitive decline and has referred me back to the Neurosurgeon that put the shunt in to make sure that it is working properly. If it is, that means the Alz is progressing and the road will get tougher.
I am still trying to do all I can to beat this. I am currently doing PT at my local VAMC and next week I meet with another PT at a locally renowed medical center who runs an adaptive sports program for veterans to have my intake done.
I’m an avid cyclist who has missed riding. (you can read about one of my rides in the links below). I am hoping to be able to start back not only riding, but golfing and archery and some other activities that are offered free to veterans accepted into the program. I am now using a rolling walker to get around, as the cane was no longer proving to be adequate, but hopefully with the PT sessions I will continue to improve and maybe find some or all of my mobility return.
I try to bring my abilities to light, since most people think of Alzheimer’s/Dementia patients as that person sitting in the corner, drooling, starting out the window blankly. That truly isn’t near the truth. Some of our ESAG members still work their jobs, 2 are full time still.
I also think more can be done for those who suffer TBI’s, especially veterans. I am trying to find ways to push for better medical intervention that happens a lot earlier than in my case. I do not want others to go down this road if it isn’t needed.
Anyway,
I hope this helps you to understand what I’ve been through. I will be glad to speak with anyone or to any group that would like to know more about my journey at any time as long as my condition holds up.
Thanks for listening,
Regards,
Keith
