I Am Living With Early Onset Dementia. This Is How My Life Has Changed.
I first noticed an issue in 2017. I was working as an analyst for a large consumer electronics company in their accounting department. I began noticing that I was having trouble with some of the regular tasks at my job, like forgetting how to use a computer program I used every week, or having trouble with numbers and sending the wrong totals to management. This was very unusual.
My boss and I thought it was just the stress from a large project we were working on and that it would ease up. We were wrong!
In May 2018, I had a seizure, and because the doctors wanted to find the cause, they ran a lot of tests. That’s when I was given a diagnosis of normal pressure hydrocephalus, which is where the fluid from the brain that normally drains to your bladder doesn’t drain anymore. Pressure is increased on the brain, which for me meant a loss of function in my limbs and with my speech, and terrible, excruciating headaches.
I was also diagnosed at the same time with early onset dementia. Early onset dementia is considered any dementia diagnosis that occurs before the age of 65. I was only 57 at the time of my diagnosis. There are many causes, but the most common two are genetics and traumatic brain injuries.
I had both. My maternal grandmother and all of her sisters were diagnosed with this. I was in a rollover accident in the U.S. Army and I wound up with a TBI and a spinal cord injury.
My biggest complaint was that when I was given the diagnosis, the neurologist simply said, “Here is what’s wrong, I’m starting you on this medication, stop at the desk on your way out to schedule your next appointment.” No suggestions for help, no brochures or directions as to where to get resources.
Since I had taken care of my grandmother for six years before we had to put her in a skilled nursing facility, I did have an idea of what I was in for down the road. As of this writing, this is a terminal illness. There is no cure. There are meds to treat this, and they do help me to have more clarity in my thoughts. When I started taking them, it was like having a lightbulb go on. But most of them will only work in the earlier stages of the disease, so I know that the benefits are somewhat limited.
Knowing what I went through with my grandmother, I immediately went through about three weeks of a pity party. I was questioning why: Why me, why now? But you know what my wife said? “Why not you?” She told me to “suck it up, buttercup” and live my life.
My employer allowed me to work for another nine months until it became apparent that I could no longer function. I had to retire on disability. My world was shattered. I felt useless, and was worried that now I would not be able to be the provider that I had been. I wasn’t sure how we would be able to survive and pay our bills. But thankfully I was granted disability quickly and, with the help of family, we did survive.
It wasn’t long before I had to quit driving. That was one of the hardest parts to give up. I’m from the South and, traditionally, the guy drives the car. I always looked at the people going down the road where the guy was in the passenger’s seat and thought, “He must have lost his license. What a sorry sap.”
Well, now I’m that sorry sap sitting in the passenger seat.
But it isn’t only that. My wife has had to take on a lot of the things that I used to do. I love cooking. Well, actually, I love baking. I am not allowed near the stove anymore. The last time I tried to make a grilled cheese sandwich, I set off the smoke detectors all over the house.
I forget things easily. I can be told something very simple, and an hour later I can’t remember anything about it. I see people that I have known for years, and I cannot tell you their name or how I know them. I am getting to the point that I am scared to go out in public where I will be in crowds. I worry about not only embarrassing myself, but also my wife.
That is one thing that I like about the groups that I participate in through the Alzheimer’s Association and with our adaptive sports programs. They know about my diagnosis and there is no judgment when I do something wacky. I feel like I can be myself around them without anyone looking down on me.
I get frustrated that this has put so much on my wife unfairly, but she assures me she doesn’t mind. She drives me anywhere that I need to go and helps me with any personal tasks I can’t manage. Sometimes I forget how to use my knife and fork to cut meat on my plate. Menus with a large amount of items can confuse me, so she glances at it and calls out my favorites that I like to eat.
There are a lot of things that will be added to my wife’s plate as this disease progresses. I’ve been told and have seen through my grandmother and others that my memory will decline and that I will have a harder time focusing. I may require a home health care nurse at first but then I will need to be sent to a “memory care” unit in a skilled nursing facility. The people who work in these units are trained on how to deal with people who have a cognitive decline, which is what the medical community calls it.
At least when it gets to that point it will lift some of the burden off of my wife physically, though emotionally I do not think it will change anything.
But for now, there are a lot of things that I can still do. I love to watch the TV show “Jeopardy!” I’m not able to answer all the categories, especially Shakespeare. But a lot of times there are categories I can answer before the contestants, all the way down the row. About half of the time, I get Final Jeopardy and the Daily Double correct. My wife is baffled at how one minute I can’t remember how to answer a basic question, but I can recall this information. I am also great at “Wheel of Fortune.”
Now that I am home with a lot more time on my hands, I have taken on some new hobbies. I loved writing poems and short stories as a child, and many times my works were displayed by the teachers. Life gets in the way, and I put writing to the wayside, but now I’ve returned to it.
I have always enjoyed cycling and I own a Cannondale Caad 8 Tiagra road bike, and I used to average rides of 40-60 miles at a time. I can no longer ride the bike, but I ride a tadpole trike, which is a tricycle that sits really low on the ground. I usually get to ride with other veterans who have disabilities every month on a local rail trail.
I now do adaptive archery. Before March of this year, I had never even held a bow. Now I am about to train, hopefully, to compete in Paralympic competitions. None of this would have happened without the circumstances caused by my diagnosis.
While this disease has brought its challenges, I am getting to experience a lot of things that are positive for me. In June 2019, I was elected to serve on the early stage advisory group for the national Alzheimer’s Association. I am now an alumni member.
During that time, I got to tell my story to several national and regional publications, and people all over the U.S. wrote to me, telling me their stories. I get to go into medical schools and speak regularly to students about living with this disease and the challenges that I have encountered while seeking medical care. I also get to share my story on social media and through online publications such as this. I know that I am making a difference and giving hope to a lot more people, both who are living with the disease and their caretakers.
I am telling you all of this to encourage the over 6 million people in the U.S. and 55 million people around the world who are living with any form of dementia. My biggest piece of advice is: Please don’t stop living. You may need to make some adjustments, but there are still many things you can do.
No, the road will not be easy. But hopefully it will be long. I have been told the average lifespan after a diagnosis like mine is about 18 years, but I am determined to go even longer than that. Mindset has a lot to do with this disease.
Enjoy the time you have. Go do what you always wanted to do, but never took the time. Keep pushing on with your life, and show others what can be done.
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