Showing posts with label #EarlyOnsetDementia. Show all posts
Showing posts with label #EarlyOnsetDementia. Show all posts

Saturday, November 16, 2019

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

Tuesday, September 17, 2019

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!

Friday, August 23, 2019

Krazy Kookin' Part 1 - Where's The Beef? Or Chicken? Or Pork?



I've always loved to cook. When my grandma would be in the kitchen cooking, as a young child I would be in the floor playing with any leftover pots and pans that weren't being used at the time.
It didn't take me long to realize there were benefits to helping cook, especially when the baking involved some type of batter. Brownie, Cookie Dough, Cake .... you name it and I would lick the spoon, the bowl and the beaters (as long as the mixer was turned off first of course)!😉
As I grew older I learned how to actually prepare food for a meal. My grandmother was an excellent cook who believed that "country" cookin' was the only way to go. Her cast iron skillets in multiple sizes were a staple in her arsenal for the kitchen.
I will have to admit that as I've gotten older, I have moved away from cast iron to nonstick but it doesn't mean that cast iron skillets are dead. If you season them right and maintain them periodically, they are still great to use. One of my problems with cast iron has been that my arthritis is getting pretty bad in my hands and fingers and the cast iron is so heavy, I've opted for lighter and easier to handle items when cooking. Either way you can't go wrong.
So yesterday I'm talking with our Alzheimer's Association Upstate Director of Development, Ms Aundi Hunter about my love of cooking and the challenges that are rearing their ugly head while we were headed to a luncheon. One of the main problems I'm having is trouble finishing a recipe that calls for too many steps or ingredients and/or that require multiple ways to measure.
I feel like I am a really great cook, and for a long time I did most of the cooking when we first were married. She was working long hours with a long drive to and from work, and my schedule allowed me to be at home a good bit of the time. Every evening I would have a hot meal in front of her either as she was walking in the door, or just a few moments later.
In 2015 I was able to return to a full time job and so we had to start sharing the load for cooking. Then she was laid off and it was her turn to keep the food in perpetual motion. I really missed it because I was working 60+ hours a week and the weekends were the only time that I had to really prepare anything.
Not only do I love to cook but I love to grill. One caveat; it has to be charcoal. Gas is fine for the logs in the fireplace, but not on my food. Charcoal gives food a taste that can't be duplicated. Sure, you can add some Liquid Smoke to a recipe, but it still won't give it the same flavor.
Cooking on a stove, or grill for that matter has become a safety concern for me now though. I don't really mean to, but I'll forget to wear mittens/gloves when taking something out of the oven or off the grill. I have reached out and grabbed food on the grill to either turn or remove it without even using a utensil, just my bare hands. Then it confuses me as to why it hurts. Finally I'll realize what I've done and put the food back or down on a plate, trying to treat the burn in the immediate aftermath.
This has caused us to change our food preparation and cooking roles once again. 
I don't do very well with food preparation either, so if something requires a lot of slicing or other tools, Sheri has to do that work for me also. I have a mini food chopper and a food processor that I use extensively to do a lot of my prep work. I also have a KitchenAid Stand Mixer that I use instead of the hand mixer as trying to hold the bowl and move the mixer around inside of it is difficult to do with my concentration. I can think about doing one, but not both at the same time. Here lately it is more of her cooking, and less of me even being in the kitchen, though I like to still make some of the simpler dishes.
I've said all this to give you a background as to where this is going. I love Aundi to death but I was surprised to learn that she doesn't like to cook things that have a lot of ingredients (think more than 3) or a lot of steps (mix and put in the oven is about the max I believe) and even she said that an easier way to cook and prepare recipes would be appealing to her and she thinks others too. So starting this week I'll be writing some blogs about cooking with Dementia and also about how we eat, a style known as Keto and why we've chosen this way of eating.
I hope you enjoy my writings and that you or someone you know can be inspired by something that I post. Don't forget to follow this blog and share with your friends.
And most of all, let's work together to #EndAlz

Sunday, August 11, 2019

Blown

This commentary and picture collages were published on the Facebook page for the Raffle that will be held for the Painting on 9/14/2019. I hope you enjoy it as much as we enjoyed creating it.

Tickets in the form of donations of $5 increments can be made HERE

In it's infancy, the painting is just the beginning of our lives. As a child we watch the master at work, knowing that they will create something magical, a piece that draws us toward the scene, unaware that by the time it is finished we may want to run the other way, retching as realization comes to us for the new reality that we are now in.


The clouds start to build on the horizon, bringing life to a vast sea of nothingness. A life is about to be formed and what seemed like it had no beginning, no end, no purpose is about to be birthed into a new world.

As the clouds start to build, we draw our eyes toward the bottom, awaiting for something to arise from the depths, and it does. There is land now, awaiting to provide nutrients to whatever finds it way and attaches itself with deep roots.


Behold! A Tree has sprung forth. A new life has begun. Branches reach higher and higher toward the sky, seeking the warmth of the sun that will be needed to grow the leaves for a tree that will do many things: Bring shade to the weary, provide safety for those who feel threatened, and help to build others up when it can no longer sustain it's own life, laying it's life down so that others can live.


 As the tree becomes full, it becomes a great symbol of life to all those around. Other beings gravitate and want to be near so that they can learn, yet feel the protection that the tree can afford. They do not take away from the life nor the nutrients of the tree, instead they enhance the tree, even providing a firm foundation in the ground below to keep it steady and strong.


 As the tree becomes full, it becomes a great symbol of life to all those around. Other beings gravitate and want to be near so that they can learn, yet feel the protection that the tree can afford. They do not take away from the life nor the nutrients of the tree, instead they enhance the tree, even providing a firm foundation in the ground below to keep it steady and strong.


As the tree ages it is no longer as vibrant as it once was. To most observers nothing has changed, maybe it has gotten even better as the scenery continues to develop all around it. The promise of what is to come becomes the garden that surrounds the tree.
Blue signifies the one who lives with Dementia/Alzheimer's
Yellow is the person who is helping to care for the Alzheimer's/Dementia person
Purple signifies a loss of a loved one/friend that finally succumbed to the disease.
Orange flowers are those who are not directly affected by Alzheimer's/Dementia, but care enough to take a stand and lift their voice in support.
One day the promise will hopefully be broken.


But as the supporters gather around the tree, the leaves begin to make their journey to their new destination, a place that is unknown to them or the others below. They do not leave because of desire, rather the wind that has kept them stirred and alive has now started to blow increasingly, ripping them from their moorings without warning, carrying the leaves on the breeze across the landscape.




As the leaves ride the winds, they begin to change, losing the vibrancy of their once proud bodies. Even the grasses are in transition as they are forced to bend to the weight of the wind. Some are able to stand firm, others start to tilt, yet others become a blur, indistinguishable to anyone or anything around them. Yet the Painter is still in control, making sure that no one is forgotten, no stone left unturned.



In the end, the Painter is still there, still tending to the scene, lending their signature, saying, "I'm here, I know, I understand, I created each of you, you are not forgotten, you will still be with me in the end."
One day the Painter will add a new flower that will overrun the garden, a White Flower, without Blemish, Pure, Cleansed, so that the other flowers can dwindle in number until finally only 1 color remains.




Sunday, June 30, 2019

Can You Hear The Ring?


(singing) "Do You Hear What I Hear?" I love this Christmas song that talks about the caroling and bells at Christmas time. But that is not the ring that this blog will be about this time.

Nope, I made another boo boo. We were getting ready this morning and I was putting the food in the slow cooker. I took my ring off to wash my hands and when I was done, I washed them one more time before putting my ring back on. I went to slip the ring on my finger and it wouldn't go back on. It made it down to the second knuckle and became stuck on top. Then I realized the problem. Wrong hand. I had put the ring on the right finger, wrong hand.

They say when you marry someone that you become like each other, and I think that is true. (I also think some people who never marry can tend to look like their pet, but that is another story.) Both me and Sheri have smaller fingers on our left hand than the fingers on our right hand. Coincidence? I don't know, but it does seem weird to me to say the least. But I digress.

So we are supposed to be walking out of the house NOW and I'm standing there with a ring that won't go on, won't pull off. I explain to Sheri what I've done and she has me to go get the hand cream from the bedroom. She squeezes a generous blob onto my finger and has me try to remove the ring again. Waa Laah! It worked!

The ring came off and I washed the cream off and then put the ring on the correct hand and finger. That got me to thinking about something. My body wouldn't accept something that wasn't supposed to be there.

Mentally I'm trying to do the same thing. Neither the Hydrocephalus nor the Dementia feel like they are supposed to be there. They feel like foreign bodies fighting for a space in my head and The War Is On!

The loss of short term memory drives me nuts. I can do something one day and by the next I can't even remember doing it. Even if we talk about it each day it doesn't stick with me. I won't remember an event, or if I do, it is after Sheri has reminded me during my round of questions. I watch as she gets frustrated with me. We own a small business downtown and now that I am out on disability, I'll go in on a good day and help out, or at least that is my intention. From what I've read I think I need to do what I can to keep my mind sharp as possible. Most of the time I get things all tangled up and wind up with her basically giving me that look that says "move on or die" and I slink off to the safety of the back room.

I don't want this creature that is trying to take what I have. I didn't ask for it, but it won't leave. I can't find the "lotion" to get it to slide back out. A lot of people tell me that they are surprised with my diagnosis. Truth is I can hold it together for a few minutes when talking to someone, but if it goes over 10 or so, I'm sunk. And it seems like Sheri has to finish my sentences more often now.

That is why I like being able to still type the blog. I can take my time and think about the words and make corrections before I "publish" the blog. I think I do a pretty good job, but if you see mistakes, please just overlook them. I don't want an editor at this time to proofread anything for me. I used to do editing for book/story writers and it can be a challenge sometimes to work with someone else on a project.

I love social media and Facebook has provided some connections that help me to keep abreast of what is happening in the world of research. Seems like there are a lot of companies/people that have good ideas about what to do, but anything that may have a slight promise seems to be more on prevention than a cure. This means I may be stuck with the "ring on the wrong finger" for quite some time.

Let's pray that someone finds that cure and does it quickly. That way someone can hand me the bottle of lotion and this mess can slide off of my body and back into the pits of Hell where it belongs.

Please also take a moment to leave me a comment below and click on the "follow" button that should be located to the right of this blog on your screen. That way you will be notified each time I publish a new blog post..

Until then, remember, #EndAlz #AlzSux #HydroWarrior4Ever




















Thursday, June 20, 2019

Well, I'll Be Dog Gone

CHAIRMAN OF THE BORED

Let me introduce you to Trinny, our 95 pound pit bull that we rescued back in March of 2015. As you can tell, she rules the roost and sits in "people" seats instead of her own bedding when she can.
People talk about how bad and dangerous this breed is. NOT. We have 2 chihuahua's also. Now those dogs are bad and dangerous. They don't call them "ankle biters" for no reason. Trinny would rather give you "kisses" and play than anything else, unless it is getting doggie treats and special leftovers (no pork, no chocolate). 
When we got Trinny they thought she was around 3 years old. So now she is somewhere around 7 years old. The life expectancy of a pit is 8-15 years. I'm hoping she makes it more to the 15 side than the 8. She is my baby and I really can't think about that day when she is no longer here.
Why are you talking about your dog on this blog? Well, it's because like Trinny my life expectancy could very well be getting shorter. The NPH (normal pressure hydrocephalus) is stable right now, but the memory impairment in testing has shown to be increasing in recent tests. I still do pretty good most days. Short term memory is up and down, though more down a lot of days. I can also tell that I'm starting to slow down a bit more than I used to. Trinny used to love to play and would do it for a long time span, but now 5 or 10 minutes she is worn out. I'm also not able to go as long as I used to. I believe part of it is because of the shunt surgery last month and my body is trying to recover and find a "new normal" if there ever was one in the first place. But also it is harder to do some things that I used to enjoy. I love puzzles, but now Sudoku puzzles are hard for me to finish whereas I used to could do the hard levels and not blink. My concentration level is almost non existent.
Like I said, I don't look forward to the day when Trinny is no longer with me. It will be a hard thing to adjust to. We are used to snuggling up together sometimes. I have let her in the bed with us and she'll lay her head on my arm and put her paw on me as though to say "I'm here daddy." Other times I have laid down in the floor and wrapped my arm around her and just laid there with her watching the TV.
And it is the same with my wife. One of our favorite things to do when we first lay down in the bed is to face each other and talk for a few minutes, steal a good night kiss, and sometimes "spoon" for a bit before we settle in to our side of the bed. When we're walking through the store you'll often times see us holding hands, even when walking in from the parking lot. We hold hands at the table when we say the blessing before each meal. We sit at church and I'll have my arm around her almost the entire time we're in the congregation.
Having memories of someone or something when they pass is one thing, but not being able to have that physical contact is another. That is why people can't just "move on" when a loved one or a pet dies. They long for that personal touch, whether giving or receiving.
Dementia unfortunately robs people of that pleasure long before the body is no longer present. The patient will sit motionless, not emitting any emotions and not presenting any gestures towards anyone. When it is a parent or grandparent, you want them to reach out and wrap their arms around you, hold your hand, and talk to you and let you know they care and it will be ok. But it won't be ok. Once they move to the more advanced stages this disease will SUCK! You will lose everything you have experienced and enjoyed about this person, yet they will still be sitting in front of you. Almost like having someone die, but they are always in the casket by your side with the lid open, instead of being buried after a proper time passes.
If you are dealing with someone that has dementia, remember, You are still You. Nothing has changed, nor should it change. You'll adapt to your surroundings, and you'll succeed at doing it. It is them that is changing, not by their choice, but from the disease. Do what you can to help them retain as much as they can for as long as they can. Enjoy each touch, each word and each gesture while you can. When they no longer can, use the memory while they are in front of you and "relive" it while they are by your side. It isn't easy. There is NOTHING easy about this disease. It has to be the absolute closest thing to Hell On Earth that you'll go through. But at least you're going through it with someone you love, and not by yourself. And when you feel like you can't do it anymore, make sure that your support system knows it and is ready to step in and take a load off. You have to plan now to be ready then.
One day Trinny and myself will be gone. Will we be missed? I certainly hope so. But I also want those around me to be able to say "Man we sure had some good times right up to the end."
And if somehow, some way, some day they figure out how to stop or cure this mess, that works even better!
Until then, Remember #HydroWarrior4Ever #AlzSux #EndAlz

Sunday, June 9, 2019

Life Sux, or Does it?


I agree. You start out in life, especially once you have finished your education goals feeling like you can take on the world. You know it all and you can't wait to share that knowledge with the world.
Then you get a job, marry, have a family and all of a sudden you realize that in the end you don't have the answers after all.
I want you to think the other way for a minute though. When you insert a straw it is generally to suck some liquid through the straw and into your mouth. You do this until the container you placed the straw in is empty, or, in the case of some really good milkshakes, too thick to move it through such a confined space.
But what if not all straws suck? What if they blow? Remember as a kid when you would be feeling goofy and instead of drinking through the straw, you blew in it instead, creating bubbles? Now granted, you really didn't add anything to the container but air, which had no new nutrients for you, but it was fun. At least it was for me. My mom used to get so frustrated at me sometimes when I would do it. "Keith Alan Moreland" she would holler from the other side of the table or room. Yep, when all 3 names come out you know your goose is cooked. I would giggle, and in turn she would eventually giggle and then I'd go back to drinking from the straw properly.
My question to you is "What if we did that to life? What if we start to blow instead of suck?" What if instead of letting our lives drain the energy and knowledge that we have, we start to find ways to keep it inside us, or at least add back in as it is taken out. When we feel like we have nothing left to give, what if we find ways to put things back in. Maybe that is the feeling of getting rest when we're tired. Or finding a way to add friends to our life. Real friends, not just Facebook friends. People who can help take some of the load off of you, perhaps teaching you ways to do it better.
I think we need to especially do the same with Dementia patients. It seems like our main focus is to add medications to the body to slow any progressions down, or help the patient cope with symptoms. While that is fine and dandy, (I'm on Namenda and Aricept myself), maybe we need to make the focus on how to add back to ourselves otherwise. "Oh, they can't do that anymore, so I don't try." Really, if your child can't do something, do you just let them walk away and quit? If you've lost of limb and can't do something anymore, do you just say, "Screw This" and skip any therapies? If you have had a heart attack or stroke, would you just lay down and wait to die????? I would surely hope not!!!!
I have something inside of me that is draining me constantly. I have Normal Pressure Hydrocephalus and it became bad enough that I have to have a shunt put in. This keeps the excess fluid in my head drained out so that the fluid doesn't do any additional damage hopefully to my brain. Notice I said "additional" as my neurologist said that my brain has taken such a beating over the last year before my shunt was put in that it will take a long time before it can ever get any healing to take place, possibly several years. NPH is also a form of dementia and we're hoping that it is the main cause of my dementia, though with my family history it is believed that I am dealing with some form of Early Onset Dementia. But while I hope that my body doesn't make more cerebral fluid than my shunt can keep up with, I also know that it will continue to add fluid that it needs to sustain life and protect my brain like it was designed to do. I didn't lay down and quit when it came to the NPH although at times I felt like it. I kept trying treatments and seeking medical advice while trying to pursue some sort of normalcy.
So why do we quit trying to make things better in ways other than medicine when there are cognitive declines?
Why don't we make therapies the focus? Keep up the medicine route as long as it shows a promise. Why don't we blow into the straw instead of letting the disease suck it out? Cognitive therapies are available all over and many insurance policies will cover it, including Medicare in the US for most people. I'm sure there are more activities that can be added. So what if you or your loved one messes up. Let them try again, even if they need to take a break until tomorrow. I believe that as long as people keep their minds busy with at least trying, even if they are not successful, then they can be stronger mentally for much longer.
I'm no doctor. I have no medical degree, but from what I know of my own experience, I believe that at least doing something keeps me feeling better and gives me a brighter attitude.
So I ask you today, Are you gonna let life suck, or are you gonna blow? I think even if life tries to suck, I'm gonna blow some REALLY BIG bubbles!!!!
And as always,
#EndAlz #AlzSux #HydroWarrior4Ever

Saturday, May 11, 2019

Erase This

Sorry this is long, but I have quite a bit to say, so just bare with me. The ending won't disappoint.

Of bands that are currently recording and performing on the Rock scene, Evanescence has to be my favorite. Amy Lee has the pipes!
One of my favorite songs of theirs is Erase This. It talks about what damage not being truthful can cause in relationships. But the lyrics also go a little bit deeper than that too, especially with Dementia patients.
Here are the first lines of the song:
(copied from LyricFind)

It's too late to change your mind
Even though this fragile world
Is tearing apart at the seams
We can't wash these sins away
This sinking feeling everyday
I'm waking up in someone else's life


She's right, it is too late to change my mind of my own accord. My mind is slowly changing itself as I go along each day. Sure, I take Namenda and Aricept, well the generic versions as that is what the insurance will pay for. But these drugs don't cure anything. They only slow the progression in most patients, though some don't see any benefit from them although they are the top prescribed medicines for Dementia patients.

"We can't wash these sins away, This sinking feeling everyday, I'm waking up in someone else's life."

Funny how the things from long ago are haunting me now as my memory struggles to stay intact. Reaching for repressed feelings and events that go back decades, my mind feels as though I'm delving deeper into the disease. I really do want to wake up and find out it was a dream, that I'm not this new person who can't function like he used to. I really am not me anymore! Surely this is someone else's life after all!

Second Verse:
Not gonna let this day go by
I'm gonna save this wasted life
And nothing can stand in my way
Not enough to say goodbye
Burn it til there's nothing left
I'm drowning in the mess that I have made


I wonder if people question why I try to advocate so hard for people with dementia. Well, are you doing it for me? Chances are the answer is NO. You will read this blog, ponder it for under a minute and then go about your merry little do dee daa daa day, never giving thought anymore to the struggles that me, my wife and my family has to deal with. So there, I'm going to do it for you. And if you are advocating, THANK YOU!!!!!! Keep up the fight! I still want to be the first survivor!

So, yes, I'm not gonna let this day go by, and going to try and save what part of this life that I have left, not letting anyone bar the door or stand in my way. Sure, I could sit here in my home and just wait for the end. It's coming and most likely I may not have the full concept and understanding when it gets here. But until then I'm going to burn the candle at both ends doing what I can to deal with it and advocate to anyone who will listen, because I'M DROWNING here in all that swirls around me.

Erase This ... pain I feel inside ....
No, I'll leave it to torture you with .... OK, but I'm taking everything else in the end with it ...

Erase This ... memory that I have that makes my heart ache ....
No, You need the memories to keep you going. The good has to come with the bad ...

Erase This ... NO, WAIT ... NOT THAT .... I want to remember her name. She has taken such good care of me! She is my rock, my fortress. Even through all of the lumbar punctures, ER trips and now facing shunt surgery, she has remained by my side and lovingly cares for me to this day. Her name ..... her name, well, I am sure I know it .... Sheri, that's it. OK, got that back.

Erase This .... but I enjoyed working there. I do not want to lose the memories just yet. I still get to visit with them at lunch and I want to be able to recall who each person is. My job functions and responsibilities are someone else's now, so that has been taken away from me, never to be reclaimed.

Erase This ... Wait, What? Eras .......

 If you would like to watch the video on youtube, click the link below:

 https://www.youtube.com/watch?v=q9S_tii37uk

Please be sure to share this with your friends! And to the fullest extent possibly, please contribute all you can to end this mess they call Dementia!




Saturday, April 13, 2019

If Running My Mouth Counted, Marathons Would Be A Breeze



This past Wednesday I had the opportunity to go to our State House and meet with our Senators and Representatives and talk with others from all over our state who have been impacted in some way by Alzheimer's and Dementia. 
Most people think the Alzheimer's Association is just for people with Alzheimer's, but the truth is Alzheimer's is just a portion of what they do. Any form of Dementia is represented, especially where legislation, research and support is concerned.
That is the message that we pushed on our visit. Most of the almost 140 supporters who attended our session have or had loved ones who Dementia affected greatly. Myself and a few others were able to bring a new reality to the legislators as we have Early Onset.
It is one thing to talk to a legislator about a disease but it is another to stare at the person with it, especially when we don't fit the mold. Most people think of someone in a skilled nursing facility whose faculties are limited with no hope of getting better, only the outlook of the decline that is ahead of them.
That is what I enjoyed about visiting the different legislators. 
SC Representative Jonathon Hill was one of the men that I had the privilege to talk with. Myself along with Cindy Alewine, who is the Executive Director of our SC Chapter of Alzheimers (pictured above) sat down for about 20 minutes and spoke with him about our concerns and to thank him for helping to pass crucial legislation. I really felt that by being able to speak about the disease first hand it made his attention more direct. He listened to every word I spoke and asked questions, even lending his experience with the disease. Cindy and myself both left from there feeling that our mission for that day was accomplished.
I also thought it was a great gesture that while we were in the balcony of the House, we were recognized by the floor, even personally acknowledging another couple who are in the fight themselves, the husband having been a very successful businessman in the Grand Strand area.
My wife says I will talk to a sign post and maybe that is a good thing at times. I want to change the perception that people have about those who are fighting this disease head on. NBC loves to use the phrase "The More You Know" and that is how I see our fight. The More You Know about Dementia, the 10 early warning signs, and the support that is out there (such as our SC Chapter) the better you will be able to deal with this.
Don't get me wrong, this is no walk in the park. #AlzSux is more than just a motto. It is my deepest feelings. From asking about a blanket draped over me and calling it "the carpet" to not being able to name the simplest things, yet sitting in my recliner watching Jeopardy and getting a good many answers right, even Final Jeopardy, this disease is FRUSTRATING!!!!
I will continue the fight. Now that I've had a taste of talking to politicians face to face, I don't think it will be the last they have seen of me.
And God is granting me new opportunities too. I'm speaking to a group in Greenville at the Alzheimer's Association office (you can get more information by contacting them) on Tuesday April 23rd at 10 AM about my experience with Early Onset and what the journey has been like so far.
In May I'll be speaking to another group in Anderson about my experiences also, and I'm sure there are other opportunities to come soon.
I've said all this to tell you the one thing I want you to remember.
No matter what position you hold, what occupation you do, please do your best to #EndAlz because #AlzSux

PLEASE consider supporting me in my efforts to raise money to fight this disease by clicking on Ride To Remember 2019 and donating what you can. $5, $50 or $500, the more $ for research, the quicker we can find a cure. I still want to be #TheFirstSurvivor!