Missed Diagnosis: My Story

 

I was a musical nerd in school. Mostly A’s, a few B’s, played trumpet from 5^th grade through 8^th. 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 3^rd 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 11^th 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 2^nd 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 9^th 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

A Donkey's Tale

(Merry Christmas! I wrote this back in the 90's and wanted to share it with you as my gift to you this holiday).

 

A Donkey's Tale

Hello, I am a donkey that helped make history a long time ago. You see, there was a man and a woman that loved each other very much. They were engaged to be married but something happened to them that blew all their plans apart. Joseph had been looking forward to his wedding day, celebrating with all his friends and family. Mary, his one and only love, had finally agreed to marry him. And she was happily going about her duties trying to get everything just right. But an unexpected visitor showed up in the middle of everything. (Don't you just hate it when company drops by and the house is a wreck?) But this visitor was an angel of the Lord and he told Mary that she was going to have a baby. (Just imagine having to tell that one to Mom and Dad!) But Mary didn't argue with him, which is unbelievable because women are given to argue, especially when they know they haven't done anything wrong. And the Angel had a busy schedule too, so he was glad also since he had yet to talk it over with Joseph. But he took no chances so he appeared in Joseph's dream and told him not to worry, that he should go to his new wife and support her in this ordeal. Joseph did what the angel told him to do even though he had some misgivings at first. 

But in order to give him time to get used to it all, Mary went to see her dear old cousin named Elisabeth and her husband, Zacharias. And guess who took her there? You guessed it, yours truly. Anyway, Elisabeth was pregnant too and she was really happy because she was "over the hill" and so was Zacharias. But when Mary walked in you should have seen what happened next. Elisabeths' tummy began to move in really funny directions because John was jumping up and down inside. John knew that his cousin was no ordinary baby. For he would someday get to baptize his cousin, the one and only Jesus. So all three of them got to rejoicing and celebrating the two new babies who would be born soon. Mary decided to stay about three months and catch up on all the news and gossip plus help out her cousin. Also Zacharias had lost his voice right before Elisabeth got pregnant. And it would probably be sometime (at least three months) before he got it back. (I bet Elisabeth was glad that she didn't have to listen to his nagging for a while.) So Mary returned to her hubby, Joseph, piggyback on me of course, and boy was he happy. I was too, for I got to rest a while again. It was a good thing too because little did I know that I would need all the strength I could get later on. 

Well, right before it was time for Mary to give birth this ruler Caesar Augustus decided he wanted to get a head count of everyone and that he wanted everyone to go back to their hometown to do it. The problem was that Joseph's hometown was 70 miles south of where we were at the time. So Joseph asked me if I would carry Mary for him (note: she sure was a lot heavier than before) since I had done such a good job earlier. I agreed as long as I didn't have to tote him too. He said don't worry; that he needed to walk since Mary's cooking had put a few pounds on him. So we take off from Nazareth and go to Bethlehem to be counted and pay our dues. Poor Joseph was having to put up with a pregnant woman and having to pay to have her along and they had as yet to enjoy any marital bliss because the Lord said NO until the baby was born. 

Well, we finally get to our destination but guess what? Someone forgot to call ahead to tell them we were coming. I mean the least they could've done was to call 1-800 -IMTIRED and book us a room (poolside of course). So here we are listening to the desk clerk tell us that the only place to rest was IN A BARN. I was hot and sweaty from all this and now not only do I have to carry them around, I have to share my bedroom too. Oh well it could be worse, I thought. (The barn could've been full, too). So we crashed out for a few days. But then one night I heard this awful crying and carrying on and when I looked up there was this bundled up body with two hands just a flailing and two eyes a crying and one gigantic mouth wide open emitting sounds like I never heard before. When I looked again it was Jesus wrapped in a blanket and laying in my plate, uh manger for you others that never have been in a barn. But he soon quieted down. 

And then it got really bright inside. At first I thought someone had turned the 3-way bulb up too high but then I realized it was this star in the East shining through the hole in the roof that someone had forgot to fix. No wonder it was so cold before that. I just thought someone had turned down the thermostat to 68 degrees to save energy. You know, I've never been in a hotel room that the air conditioner wasn't running wide open so that you became an ice cube when you walked through the door. 

Anyway, back to the story. My nose got to itching real bad and about that time this bunch of Shepherds showed up (they left their sheep outside, of course) and just as we got rid of them (I thought we never would get rid of them) these wise men showed up. They weren't so bad because they brought some stuff that we could use, like to go out and get baby bottles and stuff plus get us a hamburger or something like that to eat. 

But wait! This is the scary part. Those 3 wise men who showed up at our place had stopped at Herod's palace to get directions. (Makes sense, if you're hunting for the King of Kings, you would normally go to a royal palace to find him.) But the King got really mad when he heard who was born in his land, since he was a wimp who thought his title was on the line. He wanted the wise men to find the baby and come back and tell him, supposedly so he could see him too. But Herod was one bad dude and he actually wanted to kill him. So the angel of the Lord told the wise men to go another route and not to tell Herod nothing. They did as they were told (they were wise, not stupid-remember) and then the angel of the Lord showed up at our place and told us to skedaddle too. 

So Joseph put Mary and Jesus on my back and we took off again to another land to wait till Herod croaked. And so it was that I got to have my place in history along with a lot of other famous people, too. And thus was my contribution to the life of the one whom you all call: JESUS CHRIST

While I was away

Sooooooo........

It's been 2 months since I last sat down to write a blog. I am sure of you have been ready to call out the Posse to hunt me down. Rest assured that I'm doing just fine. Actually more than fine. I've just been really busy.

September 20, 2019 I started working on a project. It started in the UK back in the early 2000's and in 2011 it came to Minnesota in the form of the ACT on Alzheimer's program. In 2015 a national initiative was launched called Dementia Friendly America. This concept takes the idea that our communities can make themselves readily available to assist in independent living for people living with any form of dementia.
This past Monday our group met for the first time as the Anderson Area Dementia Task Force. We will be working to bring this to the Anderson South Carolina area, which will be the first county in South Carolina to be listed on the national initiative.
That has taken an enormous amount of my time almost every day, but now that the holidays are here it will be a bit easier for awhile. AND THAT IS A GOOD THING!
As of yesterday I have also accepted the position of Alzheimer's Ambassador to Jeff Duncan, US Representative for my district. So my plate is really getting full. But I don't mind. Like I've always said, the more you know, the better prepared you'll be. And I'm learning alot in all this!
I also just got back from Columbia SC where we attended the SC Alzheimer’s Research Conference and me and my wife had the pleasure to be panelists for the final session of the day. We were both excited to learn so much about what great developments are on the horizon for people like me who live each day with this disease.
In case you can't tell, I'm really pumped about what all lies ahead for me and I can't wait to keep you included on my journey.
Thank you all for the support you've shown and I hope you stay with me on this path that we're on!
Regards,
Keith

What if the Pizza Tower wasn't leaning?

IT'S NO SECRET! I LOVE PIZZA! You can tell from the pic that it loves me too!
Today I am continuing the Food Portion of my blog with my next recipe. Keto is the new way for me to cook now and like I've said before, it is a healthier way to eat also.
I'm going to be posting easy recipes to prepare for people who want to change their way of eating.
But I'm also going to post instructions for those who are "culinarily challenged" or who are living with Dementia but still want the freedom to participate in meal preparation.

Low Carb Pizza's is on the menu today.

Not just any crust will do. You'll need to use a Low Carb version of a crust. There are several out there on the market, but one of my favorite is this one:

I purchase mine at WalMart, but they are sold at other stores also. It doesn't have to be this brand, but make sure that the carbs per serving are low. How can you tell? Look at the ingredients on the package where the nutrition information is located. Find the Total Carbs then find the Fiber grams. Subtract the Fiber grams from the Total Carbs. For tortilla's you want to keep the total number below 6 if possible. There are many of them that have 20+ carbs, so make sure you do your homework. These tortillas have 16 grams of carbs, minus 11 grams of fiber, for a total of 5 net carbs. PERFECTO!

Next you will want to find the lowest amount of carbs in a pizza sauce. It is hard to find a low carb pizza sauce. Make sure again that you find one that has the lowest total net carbs. There are many recipes for making your own, or WalMart sells several that are lower (not as low as homemade, but easier to do than homemade).

Every pizza calls for Mozzarella cheese. No matter if you want to add any other toppings, Plenty of Mozza is the deal!

I made my pizzas with pepperoni. You can add whatever ingredients you want to have on your pizza. Every person likes different things. The one thing I do not recommend is to put Pineapple in your pizza is you want to do Keto as it is not recommended since it's loaded with natural sugars.

So here is what you need to make the pizzas that I had for supper last night:

1 serving

2 Low Carb Tortilla Wraps
Pizza Sauce
Mozzarella Cheese
Pepperoni (again, you can add or substitute toppings as you would like)

You will need:
1/2 Cup Measuring Cup
Tablespoon
Non Stick Aluminum Foil
Metal Pan

1. Preheat Oven on High Broil
2. Place a section of Aluminum Foil on the Sheet Pan, nonstick side up if you're using that type.
3. Place 2 tortilla wraps on the aluminum foil if you have room. If not you'll have to do 1 at a time and repeat.
4. With the Tablespoon, place 2 servings of sauce on the wrap. Using the bottom side of the spoon, spread the sauce out to about 1/2" from the outer edge of the wrap.

This is what it should look like:

Then spread the cheese around on the sauce using your fingers to sprinkle it in circles

5. Add the toppings that you want. I added pepperoni following the pattern I had made on the crust. It took about 13 slices to cover the pizza.

6. NOTE! IF YOU HAVE DEMENTIA, GO GET YOUR LOVED ONE TO HELP!
Making sure you use oven mitts, place the sheet into the oven.

7. Set the timer for 5 MINUTES! No Longer!

8. If you took the Oven Mitts off, PUT THEM BACK ON! GO GET YOUR LOVED ONE AGAIN TO HELP OR DO THIS PART FOR YOU!

9. Take the tray out of the oven and set on the counter to cool for 2-3 minutes.

10. Cut the pizza's in half to better hold them in your hands.

11. Enjoy. These pizzas are just as good as any pizza from a restaurant, but about 1/4 of the carbs that you don't need. Remember, SUGAR IS THE ENEMY OF THE BRAIN! Carbs turn into sugar. Regular pizza is loaded with carbs!!!!!

I hope you enjoy these. Let me know how yours came out and what toppings you applied to your pizza. As always, Bon Appetit' and #EndAlz!