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

Wednesday, August 28, 2019

I dropped a Key on my Toe, and now there's KETO on my plate

I spoke last week about my desire to better myself by eating healthier. The more that I read about any form of Dementia the more I keep seeing the fact that sugar has an adverse effect on brain function.
Don't get me wrong. I'm not advocating giving up sweets. Lord knows I have just as big of a sweet tooth as anyone else, I assure you.
We've found several sweeteners that allow you to enjoy the simple pleasures, yet they do not affect your blood glucose (sugar) like regular cane sugar does. Back when Diet Coke came out, I was overweight (I still am a bit) and wanted to find a way to cut back on calories so I started drinking them. I loved sodas so I drank quite a lot of them. It didn't take me but a couple of weeks to see that something was going on. Come to find out, I'm allergic to Aspartame and Saccharin. Dang it! Just when I thought I could behave (well, maybe) and do better for myself my best option went out the window.
Fast forward to 2016. I went to work for TechTronic Industries as an analyst in the Finance department. Part of the benefits for working there was a PhD Nutritionist at their beck and call to do classes on healthy eating. Books and all materials were paid for and no class fees, plus they were taught onsite, so no need to go somewhere extra after work. Sarah, our nutritionist, taught us about Keto and the benefits of a different way of eating. It is not a diet. It is truly a change of lifestyle. Our book was by a man called Mark Hyman that he titled Eat Fat, Get Thin and it changed everything that I had heard about eating. Me and Sheri needed to lose some weight so we gave it a try. In 3 months we had both lost a lot of inches and pounds, felt better than we've ever felt and were even back to exercising on a regular basis, as we now had the energy to do it.
But then we moved to be closer to my work, we bought a consignment shop and spent 9 weeks remodeling it. Needless to say at the end of the day we were exhausted and chose convenience over eating right. It didn't take long until we fell back into our habits of microwaved rice, pasta and potato dishes, along with desserts that were DEFINITELY on the NoNo list.
SO, fast forward again to 2019 and here we are going "Oh Crap" we need to get serious and stay serious this time.
But there is a curve ball thrown in this mix just to make it interesting. I love to cook. I always have as long as I can remember. (I have dementia, so no wise cracks about how long that is ......   :-)
Anywho, I cannot operate in the kitchen like I used to. Longer recipes with multiple steps and a list of ingredients that would fill a grocery cart are not in my weaponry now. I've been reduced to the old KISS principle .... Keep it Simple or I feel Stupid .... (thats my version of it).
Thankfully KETO eating is relatively simple. There are fewer ingredients and generally less steps to use to complete the process from start to finish.
Another problem I've had with switching up my eating habits. I LOVE to snack. Lance crackers, Nuts, Brownies and too many other desserts were a staple in the house for me.
HOLD THE PRESS! I HAVE GREAT NEWS!
On KETO I can still snack. YEP, you heard it right here from the horse's mouth. (buck teeth and all).
You just have to snack differently. And I'm finding that it is working with me.
My Second Announcement! I LOVE CHEESE!!!!! Doesn't matter what kind. I haven't met a cheese that I didn't like. Some are a little more pungent than others and have to be taken in smaller steps, but I'll even eat Liver Cheese on occasion. On KETO you can enjoy cheese. And there is a snack that can't be beat! KETO Cheese Crisps. And guess what? For those of you who are like me and are "culinarily (is that even a word) challenged" I have the perfect recipe and here it is:

recipe active photo

KETO CHEESE CHIPS
makes 1 serving

INGREDIENTS
1/2 cup of whatever grated cheese that you like. *You can do more than this, but it will "stove you up" if you overdo the cheese, so go easy on your system.
(yup, that's it)

DIRECTIONS
Preheat oven to 400 Degrees Fahrenheit.
While it is preheating, take out a sheet pan and line it with parchment paper. Be careful as you tear the paper from the roll. Those little spines will still cut you if you're not careful.
Sprinkle (don't tinkle) the cheese in small heaps around the paper. (hey, I have dementia so I can crack the weird jokes, what's your excuse?!?)
SAFETY TIP! Put on your oven mitts!
Insert the tray into the middle rack of the oven. Bake for about 5-7 minutes or until golden brown. Make sure it is golden and not a Georgia clay mud dobber shade. Most stoves have an oven light that will let you play Hide and go Seek or Peepsy with it.
**If you took your oven mitts off while the food is cooking, put them back on. Carefully remove or get a loved one to remove the tray (make sure you let them use the mitts since you won't need them) from the stove and sit on a cooling rack somewhere safely on the counter.
Let them cool for about 5 minutes until safe to handle. ** Use a spatula to remove the chips from the tray so that you don't accidentally burn any of your much needed (or maybe unwanted if it droops a little bit much) flesh.
Next time we'll look more into Sweeteners and some desserts that you can make that are easy to eat.
Until then, keep fighting the good fight and remember, with your help we can #EndAlz because #AlzSux.

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

Friday, June 7, 2019

ABC's of Dementia for Caregivers

Approach with a positive attitude, from the front with a smile. Address them by name.

Breathe. Take a deep breath before the visit/encounter. They can read your essence and body language before they can comprehend what you are saying.

Cue them. Instead of “Do you want to put on your sweater?” Put yours on, and offer help with hers.

Dementia is the umbrella term. Alzheimer’s, Lewy Body, Vascular, & Frontotemporal are types of dementia. Alzheimer’s is the most common type, diagnosed 70% of the time.

Every day is a new day. A bad day yesterday does not mean a bad day today. Take it one day at a time.

Follow their lead. If they want to tell the same story or wash the same dish over and over again, let them.

Give them purpose. Ask their advice, give them a task. Even if they do it wrong, they’ll feel worthy because they accomplished something.

Honor who they are and who they were. They had a good, productive life even though they may not be able to feed or dress themselves anymore.

Investigate. If they are agitated, they may not be able to tell you why. Are they hungry or thirsty? Tired? Do they have to go to the bathroom?

Joy. Revel in the joyful moments with your person with dementia. Let those moments fill you up.

Keep eye contact. It establishes trust and helps you make a connection.

Love. Give a lot of love to your person. It makes them feel safe and cared for.

Mistakes. You will make them. You will say and do the wrong things. Forgive yourself. Caregiving is a very hard job.

Never argue with the person with dementia. It agitates them and you and makes everything harder.

Oxygen. Take your oxygen first. Like on an airplane. Care for yourself. If you are not a strong, healthy caregiver, you cannot be strong for your loved one.
Practice patience. It could take 20 seconds for someone with dementia to understand your question and come up with an answer.

Quiet. TV, radio, several conversations at once make it hard for the person to concentrate. Take them to a quiet place to visit or connect.

Redirect. If they are frustrated or upset, change the topic or environment, suggest an activity they like to do, or offer some tea or ice cream.

Simple. Keep sentences simple. Their brain processes differently and too many details will overwhelm them.

Talk about the old days, things from their past. As their short term memories go away, the long term memories remain.

Use fiblets. “I have to pick up my daughter from school!” says the 80 year old. “Your daughter called, she is staying late to play soccer. Let’s go in here and listen to some music…” Tell a little story and then redirect.

Validate their feelings and thoughts. “Yes, it is Tuesday (even if it’s Friday) but today we are going to do a Friday activity.” Goes along with *not* telling them they are wrong.

Walk in their shoes. Just as you do not want them to be sick, they don’t want this disease. Realize they are frustrated too, because they can’t do things or remember things like they used to be able to.
eXercise. Go for a walk with your person with dementia. Or do chair exercises. Getting the blood flowing is good for the heart and brain.

You are not alone. There are many resources out there. Support groups, caregiving courses. You just need to make the first move.

Zzzz’s. Let them rest. This disease is exhausting, for both of you. You rest, too.

Written by:
Kristen Cusato who is an Alzheimer’s advocate, educator and former caregiver for her mother.

Thursday, May 30, 2019

If VanDamme, Schwarzenegger & Stallone got in a fight, What would it look like? ... Me :-(


This is about how my head feels right now. Too many things going on in too many new places that I never dreamed of.

Now I love all 3 of the characters listed in the title above, but Van Damme is by far my favorite! I would like to meet him and get an autograph one day, even have him autograph my head since it feels like he is responsible.
No, I was not actually attacked by any of them, or anyone, unless you consider my surgeon's use of drills and scalpels a threat. But man it feels like it. I have more war wounds over my body than I can shake a stick at. But at least I hope I can move on.
For those of you that have followed my blog so far, it has mainly been about the Dementia and Advocacy side of what I've been dealing with. For this blog I'm going "over to the other side" and talk more about the NPH and what I just went through in the last 11 months. I will be back to the dementia portion next time, hopefully with some really BIG news, possibly on 2 fronts. We'll see.
I'm going to back up and give you a bit of history for those who don't want to read all of the other blogs. 
My son was born at 25 1/2 weeks because my first wife's appendix ruptured and they thought it was a stomach bug. The poison got into her system and within 12 hours our son was born. 2 lbs 5 oz, 18" long. No other baby had been born that early and lived, so we only had UP to go from here. 8 days old he was sent to another hospital for a heart surgery. My wife was in ICU with no reality of making it. My mom and her mom went down with our son to keep us updated. At one point during his stay, and after the surgery, he was removed from life support. NO ONE gave permission for this to happen. My mom realized what was happening and they hooked him back up immediately when she threatened. BUT. The damage was already done.
Because of the swelling it was decided at 5 weeks that he would be moved to another hospital and a possible shunt surgery. In 1984 these were still VERY new, so we didn't have much to go on. Remember, there was no internet at the time so we couldn't do a lot of researching either. So the surgery was done, he returned back to our hospital and after 3 1/2 months in a hospital from birth, he was released into our care.
Fast Forward to April 1981
I'm stationed in what was West Germany at the time in a Field Artillery Unit as a mechanic. We were on a training mission in the southern region of Bavaria and I was riding in a 2 1/2 Ton Truck that we converted with wood to a mobile garage of sorts. The driver lost control and the truck went into the ditch, flipped, and my spine and headed landed against one of the boards that braced the plywood exterior.
Couldn't move and was unconscious at first, then transported by field ambulance to the nearest hospital. Mental capacities returned quickly, but mobility was limited, so I was given an Honorable Discharge under Medical Conditions after serving almost 3 years.
My health wavered and at one time I was in a wheelchair. But mentally I seemed to be ok, or so I thought.
Fast forward to 2018. Specifically the month of May.
The pressure in my head is excruciating. I'm sitting in the office of a Neurologist for the first time in decades. Questions that I can't seem to find the answers for are being tossed at me, one after another. Tests are being scheduled, including an MRI at a local facility there in town. I feel lucky through all of this though. A dear sweet friend of ours is an RN at this office and was able to get us in to see the neuro the next day after the attack on my brain. We believe I had a seizure, though there is no record of one previously. The MRI of the head was conducted and a second one of the entire body was also scheduled just to rule out any other possible problems, especially with the spinal cord injury. Enlarged ventricles were noted on the MRI, the pressure had not subsided in my head, so a Lumbar Puncture (Spinal Tap) was scheduled to see if it would help. Also, some of the fluid would be tested that was removed for other diseases.
Then came June 25th. I am sitting in one of the patient room's at the neuro's office with my wife awaiting all of the results. The Lumbar Puncture did help a lot so we knew that we were on to something.
Then she was in front of me talking some gibberish and some half speak that I only partially understood. MRI, Dementia, Hydrocephalus, Pressures, Parkinson, and other words that seemed to float around the room without anywhere to land.
When it all was gathered, Normal Pressure Hydrocephalus and Early Onset Dementia were the diagnoses given. NPH (Normal Pressure Hydrocephalus) can have symptoms similar to Parkinson's but yet the patient will not have and may never contract the disease. I had a constant expanding and contracting in my hand and feet muscles, mainly on my right side. When the tap was performed for the Lumbar Puncture, the pressure was 13 and 32cc's of fluid were removed, confirming the NPH.
The dementia diagnosis really deflated me. It's bad enough to have to fight one of the diseases, let along both at one time. I was able to pass most of the memory tests, with short term loss being my biggest deficit. 
Options were discussed including shunt placement and more lumbar punctures. The neurologist felt that shunts were too risky and was hoping that infrequent lumbar punctures would alleviate the problem.
Problem was that the lumbar punctures became more frequent. I would undergo a total of 5 in less than a year, with the last one only helping for less than a total of 5 weeks.
So now I am at another Neurologists office. I've already seen a Neurosurgeon after being referred during an ER visit where the pain had become too much once again, and having another MRI done to compare any changes. Both of these doctors seem to think that a shunt is the answer and do not understand why I have waited so long. Sometimes when you're scared and trying to figure out what is best, you do what you think is best, whether it really was or not. I was still working at the time and a Friday Lumbar Puncture meant losing only 1 day of work and returning to my regular schedule by Monday. Minimizing lost (reduced) wages was a HUGE priority at the time. We had just opened our shop less than a year earlier and were not in the black yet, so my paycheck not only covered our household bills, it helped keep the shop afloat in the early days.
Anyway, both docs conferred and a decision to operate was made. The Neurosurgeon preferred to work with another General Surgeon that he had tag teamed many times previously when doing shunt placements. I would have to wait 3 weeks for the surgery, but at the time it seemed doable. Then 11 days out, I lost the ability to speak once again. This had become the common theme for me right before each time the lumbar puncture was performed. Calls were furiously flying back and forth between us, between surgeon offices and medical facilities. 2 days later I was to report to the hospital for pre-op testing and paperwork. The following day would be my surgery date. The Neuro preferred to use a non-programmable shunt. That is what my son has (he is on his 3rd one now after 34 years).
So that is what he went with. A medium pressure valve is what he went with and I survived. Well, I think so. By the next day after the surgery I was ready to strangle someone. I wanted to reach down someone's throat, sucker punch them in the side of the head and remove their gonads through the swollen, narrow channel that I had just created in their ear canal.
Instead I asked for pain meds. Morphine was a joke and I don't do the Norco's of the world. 
Fioricet seemed to be the answer. I had taken it previously for the headaches and so I was switched to that for a few days, finally able to wean off to extra strength Excedrin.
2 days in the hospital and I made my escape back to my house. That was on Saturday and by Tuesday I felt like I could start to move around and try to find some sort of normalcy. 2 days later and I'm sitting here in my recliner writing this blog, and only having taken one dose so far of the Excedrin, so I figure I'm doing ok.
My biggest thought now is to see where this leaves me with the dementia. I'm hoping that it will be better. I'm sure when I go to the neurosurgeon to get my stitches/staples out that they will test me again as they do at each visit.
I don't like what I've had to go through one bit. This has sucked THE BIG ONE all the way, from the pain to the stupid crap that I do from the dementia. But if just 1 person is helped through me writing about my experiences then at least a greater cause was served. Not to mention that no matter what, I was still able to serve my country for several years before the injury stopped me in my tracks. I would be there with my brothers if at all possible, but my prayers and thoughts can definitely continue to move along with them as they go about their duties protecting our nation.
I see a lot of people talking bad about our country, our President and his family and their neighbors in general.
As a Veteran, it makes me sad. While I do not agree and will not agree with every action that is taken on behalf of our nation, I still believe that this is the best possible option available to us. If you're foolish enough to think otherwise, just go live in another country for a few years and see if their benefits outweigh ours. 
There are things that I hope will change, but I also know we have to let go of the past at the same time. If you lost a war, admit defeat, evaluate all mistakes made, then move on. Armies are never successful if they quit at the first battlefield loss. Our nation will never be successful if we continue to live in the past that still haunts us today. And I will be more successful if I choose not to reflect on the pain that I have come through and the damage left to my body and instead choose to finding a new way to conquer the challenges, refuse to live a defeated and regretted life, and make sure that "The More You Know" becomes my mantra about any form of Dementia and Hydrocephalus from this day forward.
Sorry for the long spiel, but I wanted to put everything together in one piece. I hope if you haven't read the rest of the blogs, you will take the time to read the rest of my writings, leaving comments as you go to let me know your thoughts too.
And until next time: #AlzSux, #EndAlz, #HydroWarrior4Ever


Saturday, May 18, 2019

If A Bear Can Use Charmin, Why Am I In The Woods Using Leaves?


One of things about any form of Dementia is that I am always having off the wall thoughts, as noted in the title. I guess my mind is trying to make sense of my thoughts and it puts together whatever it can find.

My wife is usually rolling her eyes at me several times a day. Sometimes it is because I've used the wrong word when trying to describe an action or event. But other times I just like to say weird stuff to mess with her head once in awhile. SHHHHH ...... don't tell her that though! LOL

A lot of times we're riding down the road and I will get a phrase or a word stuck in my head. Billboards, Radio Advertisements, signs/decals on vehicles and other various sights provide a wealth of possible jokes for my brain to stew on.

What I don't get is how I can come up with a punch line really quick, or a joke about something I saw, but ask me to repeat 3 words at the doctors office 5 minutes later and I can't get one of them right. That will frustrate the &$%# out of anyone my friends!

Sheri told the doc that sometimes it feels like I'm faking this, then other days she thinks I went over the edge finally. The doc told her "Welcome to Dementia"! I admit, there are days where I feel like I'm on my game and I could tackle any task. Then there are days like today where I have my mayo packet it one hand, my steak biscuit from BoJ's in the other, and I can't figure out how to get one on the other one. UGH.

In less than 2 weeks now I'll be having a shunt surgery to relieve some of this pressure that causes so many bad headaches, or at least that is what they hope it will do. I'll still have them from the hydrocephalus, but they shouldn't be as intense. I've had to stop playing bass in the church worship band because I can't concentrate and my right hand keeps doing its little spastic things that it has fun driving me nuts when I least expect it. At any one time it might draw my hand into a fist, or it may flip one (or more) of my fingers out. So if I look like I'm about to sucker punch you or flip you off when you're around, don't worry, most likely it is pulling another number on me. I still could do one or the other too, but usually i'm just too tired for any crap starting nowadays! :-p

I probably will write one more before my surgery and then it may be a few weeks before I'm back. I'm unsure at the moment how long I'm "Down and Out" with this procedure. But I do promise you this: I'll still be back here, hopefully inspiring someone to keep pressing on while I continue to show how warped my mind gets as time rolls on.

SO until next time: #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!




Monday, May 6, 2019

We Screwed Ourselves & "Doin the Deed" Wasn't So Much Fun Afterwards

*Disclaimer - Agnostics, Atheists and all others who don't know what you are, this is not a political or religious post to pound my theology into someone. This is simply how I see it and believe the solution to the problem is needed.

Ok, you're going WHAT does that title mean? And how does this apply to Dementia?

First let me state this. I am a HUGE proponent of research and applying anything we've learned to patients dealing with this disease and hopefully stopping others before they have to. I feel like we're making HUGE advances in research. Yes there are a lot of trials that don't pan out, but for every one of them that didn't work, at least we know not to try that one again and we can move on to the next, so progress is being made no matter how you look at it.

But, HOUSTON WE HAVE A PROBLEM!

For years the "family unit" has disintegrated into almost nothing. Now single parenting is the normal and no longer the exception. Mom's and Dad's are divorcing at alarming rates over things like, "I'm tired of this, I want my freedom" and other such crap. Remember "Til Death Do Us Part"? Or did you fall asleep in church during that part? Too many people go to church but never learn anything because they are distracted or sleep through the lessons & sermons, but that is for another blog on another site on another day.

Then those Mom's and Dad's are remarrying, many times to spouses who are single parents, so now we have the "Step" thing going on. This is all well and good. A good friend of ours has a "Blended Family Ministry" that she goes around the country, as well as writing books, social media and blogs about. Me and my wife met in our later years and we both are divorced with sons from a previous marriage. They are grown up and do not live with us now, so I totally get the "step" thing.

From the Alzheimers Website: "As the number of older Americans grows rapidly, so too will the number of new and existing cases of Alzheimer's. By 2050, the number of people age 65 and older with Alzheimer’s dementia may grow to a projected 13.8 million, barring the development of medical breakthroughs to prevent, slow or cure Alzheimer’s disease." This is up from the 5.6 million currently.


Herein lies the problem ... We've now made an encroaching problem twice as bad.

We now have families that will face having to deal with not only their own parents health problems, but also the step parents health problems as well. You've got the actual children of Man 1 and Woman 2, who are now thrust into Stepman 3 and Stepwoman 4, who have children between them.

So now when parents get sick, alot of times they have been raised as young children with the step parents, and there is a bond. So not only do they have their own parents to deal with, they have their step parents.

Now when those children get married, they now also get to add the other parents and step parents (if applicable) to the mix to take care of. Many of the families have full time jobs as there are few couples who can afford to be a 1 income household.

Now they can be taking care of as many as 4 sets of parents possibly, sometimes even more, depending on who remarried and how many times.

Add to this the good thing that people are living longer, but also the bad thing that people are living longer. As people are able to live longer, the caregivers enter a later stage in life closer to retirement and many times develop health problems that require some sort of assistance from the spouse/partner. Now they just added having to care for them on top of having too many others who need to have assistance.

You see, people think that when you get dementia you just get wrapped up in a blanket and sit in a rocker in the nursing home. NOT!!! They say there are 200,000 people like me who are living with some form of dementia, yet still able to live at home, some even still working.

Assisted Living/Nursing Care in a skilled nursing facility is VERY expensive, many times costing 1000's of dollars. Yes, there are medicaid beds, but those are on a limited basis and usually have long waiting lists. So their loved ones are either kept at their home with a visiting nurse or moved into the children's residence if they have moved into the later stages of dementia.

WE DON'T HAVE AN EASY ANSWER!

We can't just throw people away or try to push them into a corner and ignore them like they don't exist. We have to address the current problem and MESS that we've got ourselves into. What that answer is depends on who you talk to. That gets into a lot of political and like i said, this piece is not about that.

Millions of dollars are being spent on research. MANY more millions of dollars are being spent on healthcare. Hopefully a cure can be found, or at least a way to freeze everyone in their current state so that they won't get any worse until a permanent cure can be found. At least the children would only have to deal with the current state of affairs for the time being.

BUT until that is done, we need to start on another reversal or healing, what ever you want to call it. We need to start working to put the family unit back together. I'm not saying we need to cut out divorce either. There are times when the best possible solution to prevent loss of life is for divorce and a lot of court filings.

But for those who just want an easy way out, we need to find a way to identify those people and work with them to resolve feelings and issues so that the family can stay together. Even then it is still tough to have 2 sets of parents to deal with, but that beats 4 or more sets which would put anyone in a mental unit themselves.

If we can stop or greatly slow down the Family disease that is tearing them apart, hopefully we can help the Family unit be able to deal with the other diseases that inevitably affect others lives down the road.

Sometimes you can't just throw a treatment or medicine at something. Sometimes you have to actually get deeper into the root of the problem. Getting buried by too many responsibilities of too many sets of parents cannot continue to grow. We simply do not have the mental health care setup in the US to deal with something like that.

So join with me in working to make a difference now. We can't stop what has happened. Divorced couples rarely get back together, so the damage has been done. But those on the brink of divorce can still be reached. Counseling can be effective and has been effective in many situations. But someone needs to encourage people to seek it out instead of saying, "oh well" when talking about the split-up or near split-up.

Alzheimers Sux. Period. The problems go a lot deeper than just the disease as I have spoke of. If you think caring for a parent is hard, try taking care of your spouse at the same time who should be there to help support you in the care of the parents. There are some things we can't prevent right now, so let's work on the things that we can!

For more information about the Alzheimer's crisis our country is facing, read these quick facts:

https://www.alz.org/alzheimers-dementia/facts-figures

And as always:
If you would like to support me and help us find a cure, please visit my fundraising page and make a donation of any amount. Every bit helps! 

Please Click HERE to Support My Ride To Remember

Thank you for your support!!

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!

Tuesday, April 2, 2019

Do No Harm?


I’m frustrated and mad the more I think about this.
My grandmother started doing strange things in 1992. She was in her 80’s and we thought it was just her getting old. We took her to the doctor that was her and my mom’s family physician. He said she was fine, just getting older.
Then she got to the point that we had to take the keys away from her so she couldn’t drive. She almost got herself and my mom killed by crossing lanes on a 4-lane highway with a large median and heading toward a tanker truck that was coming towards her. My mom had lost her vision due to diabetic retinopathy, so she depended on my grandmother for transportation.
Then a few years later we were eating at the table. My mom, her sister and family were gathered around. Nana (that is what we called her) had lost the capability to cook (she was the only one who did the cooking when I was growing up), the doc once again said it was just old age, “old timers” as he called it. We asked about dementia. Nope, she was just getting old.
My Nana was no fancy smancy lady, but she had manners. So the night when she went out on the porch (we lived on the “mill hill”) and squatted in front of God and all the neighbors and took a pee I called BS.
We took her back to the doc the next day and explained what had happened. Nope, there was no problem. This went on for 6 years. Now I have no medical degree and neither did anyone in our family, but we knew that something was up.
One day Nana fell and wound up in the hospital. Guess what??? The attending physician referred a neurologist to visit her in the hospital and the dementia diagnosis was given. Seems we were right, she had battled the disease when we first suspected it. I never could understand why the doctor couldn’t see it. But is was too late. 6 months later she was dead.
Granted, when we would take her she did act decent and as though she were in her right mind. She could answer the simple questions that he asked. But the doc should have figured out that we may know a little bit about what we were telling him. Had he pressed her more he most likely would have discovered there was more than meets the eye. Even having her do a battery of tests could have been warranted that would have tested her mental capacities.

Fast forward to today. I’m talking to a local Alzheimer’s advocate about why people aren’t getting diagnosed earlier in the stages of this disease. She told me, “most of the doctors simply do not want to acknowledge that the patient has something that can’t be cured. They are trained to fix things, and (as of the time I’m writing this), there isn’t a fix.” So the doctors choose not to tell. They may prescribe the medicines, but they will either forego explaining what the med does, or they will tell them it is for something completely different, even though they know it is a lie.
DAMN! Now, do you see why I’m mad?!?!?!?!?

Here is the Hypocratic Oath that was adopted in the 1960’s.
     I swear to fulfill, to the best of my ability and judgment, this covenant:
    I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.
    I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism. (notice that they will apply their knowledge and ALL FREAKING MEASURES that are required and it is for the BENEFIT of the sick. If you don’t tell the patient, how can you expect them to benefit???) I’ll talk more on this point later.
    I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug. (IN OTHER WORDS, LISTEN TO THE PATIENT AND THEIR FAMILY!!!!)
    I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery. 1 WORD “REFERRAL”
    I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God. “enough said”
    I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick. (When the family doesn’t know for sure, they can’t prepare adequately, therefore you are not keeping your oath doctors when you fail to talk candidly with the family and loved ones about the patient and what may lie ahead.)
    I will prevent disease whenever I can, for prevention is preferable to cure.
    I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.
    If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help. (Herein lies the problem. “may I long experience the joy of healing those who seek my help.”) DOCTORS, you CANNOT skip over the other parts of this oath and cling to this one, writing off those you know where there is no cure!
Here is another way to look at it.

Scenario 1: A patient comes in and through testing you find that they have a cancer that is stage 1 (whatever). No patient has ever been cured, but there are drug therapies that have shown promise at greatly slowing the disease. You choose not to tell them what is wrong, you simply tell them that they are tired and hurting but you can prescribe something that will make them feel better. They go home and take the pill, but the disease progresses until stage 4 and too many of their loved ones are suspecting cancer because of the signs. You “run” some tests again and tell them that they have stage 4 cancer. No treatment will be effective at this stage, but if they’d like you can try it, or you’ll refer them to hospice where they can be comfortable until they pass. Many cancers feed on SUGAR and will EXACERBATE the condition, but this person won't know to at least change their diet BECAUSE YOU DIDN'T TELL THEM!

Scenario 2: A patient comes in complaining of symptoms that could be the flu or at least a pneumatic problem. Through your talk with them you discover that they have multiple partners and hate the thought of having to use any protection. A blood test will confirm your worst fear, HIV. Knowing the stigma that HIV brings, you tell them that they have some sort of infection affecting their breathing and give them a drug that has shown promise in HIV patients. You explain that it may take a while to feel better, hoping that the medicine will buy them time. BUT, you’ve now sent someone on their way who can continue to go our and unknowingly infect many others because of their lifestyle.

Scenario 3: A patient comes in complaining of tiredness, trouble going up hills or walking any distance at all. You run tests and discover that they have Congestive Heart Failure. There is no cure, but there are treatments with oral drugs that can be given. A diuretic will draw the fluid off and make them feel better. You admit them overnight in the hospital, run IV diuretics for a day, pull down 15-20 pounds of fluid. The patient feels great. You send them home with the pill, maybe combined with a blood pressure med (tell them they need this bp med as it is newer and better) and hope for the best. Meanwhile the person who needs to step up their activity and cardio strengthening goes back home to the couch where they have resided for the past few months. They continue to battle the buildup, but you never tell them until the heart attack happens and it is too late to do anything.

DOCTORS! Answer me this. Would you really do any of these situations? If so, which of the 3 do you think is OK? NONE YOU SAY?!?!? Well then, why are you doing the same thing to patients who have other incurable diseases, just because of the stigma that may be attached.
I’m not one who likes to think about government regulation. I think that the government needs to butt out of people’s business. But when it comes to deception, which is what this is, the powers that be need to hold someone accountable.
I would like to see a bill passed either at the state level for each state, or preferably at the national level that would prevent any of these scenario’s from ever happening again. I would call it the “Right To Know” Act. It would state that the moment a physician knows or suspects a diagnosis, they are required to tell the patient and/or the family about what they suspect or have found. This would put the burden on the family and patient. The physician would give them all the options and they could choose. If they don’t do anything about it, then the physician is relieved of any responsibility. But any physician that fails to do as such, would be subject to a license review and possible forfeiture.
BUT, let me say this. I’m not saying all doctors are bad. There are plenty of them that are upfront and tell the patient and the family what is going on. I’m lucky enough to have that kind of medical care. I understand no doctor wants to be faced with something that can’t be fixed. They don’t want to feel like they failed someone because they could not provide a cure.
But withholding information is failing someone. It is preventing someone from actively searching for the next steps and developing a plan and solution for their care going forward. Deception is rarely excusable unless the reveal could cause irreversible traumatic damage.
We have to move forward and get more doctors and families to be more proactive in the patient care to the utmost fullness that is humanly possible. How do we do that? Like I said, I hate adding more regulations, but unless we’re going to put this at the forefront of the healthcare sector of our nation, this is needed to stop the madness before more people have to suffer needlessly.

What are your thoughts on this? I welcome your thoughts and what you have witnessed through watching and experiencing these situations with your friends and loved ones. Together we can make a change for the better, but we need to start the conversation NOW!
As always, #AlzSux #HydroWarrior4Ever! #EndAlz