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

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

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!

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!!

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!

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

In like a Lion, Out like a Lamb

SPRING HAS SPRUNG HERE!!!!!!

I cannot believe it. It is 73 degrees as I type this here in Anderson, SC. Earlier this week it was breezy and in the 50's. In just a few days it will be back to those temps before it warms again next weekend. I cannot wait until the temps stay stable. I'm ready to get back in the saddle for the Ride To Remember 2019. 

This year the old adage for March, "In like a Lion, Out like a Lamb" has been right on target as far as the weather is concerned. And for the dementia, I can say the same thing.

I mentioned in an earlier blog that I have now been put out of work on permanent disability. Frankly it stinks. I still wanted to work and tried my best to find a way, but by the first of this month is was becoming apparent that I was having trouble doing even the simplest things at work. Dementia was roaring at me, "I've got you now. I'll squash you like a bug." Truthfully I felt that it was faithfully carrying out its mission at the time. My job as an Analyst created a lot of stress and high pressure. I tried to find alternatives to my duties that I could do and still be a viable worker.

In the end my doctor and my bosses both agreed that the time had come.

Fast forward to now. I've been out of work for 2 weeks. My wife says I'm a different man. She says I am able to be more focused and a bit sharper. I will admit that I do feel a bit better too. I'm still a little bit bummed about not working now, but my focus has now turned into protecting what I have left of a brain and body. 

I'm like that lamb in the picture, I know the Lion is still there, but kinda chilling at the moment. I feel like I can lay my head down and rest for a minute, even if I'm still connected to the Lion. I know that connection will always be there unless a cure if found, but it isn't raging, trying to tear me down.

I'm also going to use this time to talk to others about my disease. Opportunities are opening up for me to do as such i.e. Alzheimers Coffee Talk Greenville, Alzheimers State House Day, Congressional Staff/Military Advisors, Local/National Company Annual Meetings just for April.

I know God still has a plan in all of this, and I just hope I can make him proud in what I do.

For now I will keep pushing on through this disease. 

For those of you reading this, please consider making a donation by following the link above. I really want a cure to be found soon so that I can have many, many more years to spend with my wife and friends. 

Until next time, #AlzSux, #EndAlz

 

The Circle of Life - Living and Working with Dementia

The Circle of Life

Well, sometimes it all come around. Styles go out. Styles come back in. Genre's get a revival then fizzle out again as something new comes along.
And then there are jobs that come and go. Mine came and went this week.

The Backstory
4 years ago on my birthday i received a job offer letter in the mail after my interview process, which i quickly accepted. I had worked at TTI the previous year as a temp worker under Phillips Staffing. In my position I interacted on a daily basis with the accounts receivable department. After leaving to try my hand at running my own business, I was hired on in the AR department.


Fast forward to my birthday this year. I'm sitting at the doctors office while she fills out the paperwork to put me on disability because of the Hydrocephalus and Dementia. I could no longer fulfill my duties and the paperwork was completed to start the process of putting me out on "continuous" disability, with the words "lifetime" and "permanent" being interspersed.
We always knew the day would come, but you keep hoping that it is still quite a ways down the road.
Now it is the reality that is staring us in the face.

What do I do with myself now?
This is going to feel kinda weird being out on disability. I still want to be able to do, but my ability to drive has become severely limited. I'm not able to do as much around the house either. Yesterday we went and bought me a used walker for the times when my balance is really bad from the Hydrocephalus. Next week I have an appointment with Social Security to file for SSDI.
It was only 4 years ago that I had gone back to work to be off of SSDI after 21 years. Like that rock song says, "Now here we go again!"

Think Positive
I know God brings things to us when the time is right and I'm trusting that he will bring an exciting new chapter into my life next. A cure would be the best thing, but i'll accept whatever he does give me. I try not to be scared or stressing out and so far i'm doing pretty good at it. There were a lot of tears at work yesterday as I stopped in my department to say goodbye. I'm not going to think of myself as a failure. I kept plowing full steam ahead until I finally could not do it anymore. Even our CFO left a note that he wanted to see me before i left. He thanked me for all i had done and it made me feel good and appreciated. That is a great way to go out!

Here We Go!
Now for what comes next, I don't know. But I'm ready for whatever comes my way. I do hope that the next "circle" lasts a bit longer as 3 years were really quick.

Question for commentors?
Have you witnessed a family member or a friend go through a time when they had to quit working due to their health?
What advice would you give to someone going through this, or to someone watching their loved one/friend go through this? 

So until the next update, just remember #AlzSux #HydroWarrior4Ever #KeepFighting

If you would like to support me and help us find a cure, please visit my Alzheimer's Association Ride To Remember 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!!

There Is Sanity In Cycling!

I love my road bike, and that is a good thing. My wife said I had better love it as I was going to have to live with it for a long time. Well, 3 years later we're still in love. (oh, me and Sheri are too!) 

That is what has gotten me to this point. If my friend at the time had not talked me into trying to ride again I would have missed out on the greatest camaraderie in the world; cycling. 

I was blessed to get to ride in The Ride To Remember last year and I'm excited to say that I'm registered again this year to ride with the Ryobi Cyclepaths.

Last year I was blessed to make so many new friends and I can't wait to see you all again. But I also can't thank the people who do this ride as volunteers for all that they do for us riders. I've never felt so well taken care of and loved than I have those 3 days.

Here is the nice thing. It didn't stop there. I met an incredible lady named Jamie Guay. She heads up a connections group that is comprised of people like me and their spouses/caregivers and we have a regular activity every month, as well as special programs as they become available. She even started a new group on Tuesdays so that I could come. The other group meets on Thursdays and Sheri is running the store so she can't take me. 

I don't drive very much any more. Just around town and not that often.

That is what makes the cycling so special to me. As you start to lose the ability to do the things you've always enjoyed, it can make you feel more isolated and frustrated. I used to go to Greenville and ride on the Swamp Rabbit Trail most Saturdays. Now that is not a possibility. I haven't really found anyone in Anderson to ride with so it keeps me limited. But I'm not going to let that keep me from riding and preparing for RTR 2019. 

I have subscribed to an app called Ride with GPS. $5.99 a month and it will track what I do and how long it took me. It also allows anyone to follow along with where I'm at on the bike. That way if something happens and I don't return, it is easy to locate me.

The biggest thing I know (sounds funny coming from a dementia patient) is that when i'm on my bike pedaling down the road, that is my glory moment. I can revel in the triumphs of the steep hills, the "faster than that dang dog" moments and the smell of the surroundings, except for the farms. For these minutes and or hours I can forget about my condition.

People don't realize that the disease affects more than just the mind. It affects how much you can continue to work, which affects how much you bring home to pay the bills, which affects your quality of life, which affects relationships that are strained because of this disease already.

My wife is my rock, my fortress, my shield. She puts up with a lot yet she worries about me a lot too. Even to the point that she is going to see about being my SAG vehicle for the ride this year. You see, i'm a lot slower than most, averaging about 14 mph, so I tend to get left out on the course by myself. This way I can have someone dedicated to me full time without taking a resource away from the other riders. Kimberly Best and her hubby were really great to keep an eye out for me, even letting me ride with them when I needed it and for that I'm very much grateful. 

So if you pass by me anywhere from Fountain Inn to Mt. Pleasant, throw up your hand and wave and I'll gladly wave back to you. I loved riding with you all last year and I know we're going to have a blast again this year.

And hopefully my sanity gets a boost too! 

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!!

An Open Letter to God and Santa

An Open Letter to Santa and God

Dear Gentlemen,

I know I am a bit old to be writing you, but this Christmas the urge to do so was so overwhelming I feel that I have no other choice.

My Christmas present request this year is going to seem a bit strange, and maybe a little strewn, but I want this Christmas to be the most special that I have ever had.

This year has been a tough year on my family. After only 2 ½ months after opening our new business, we found ourselves staring at the New Year. We were hopeful that this would be a new year filled with new promises that would grant us a new start in life. We had only bought a house the past summer, the shop a month later and with the Christmas season preparations at the shop, hectic does not properly describe what our life was like during the last few months of 2017.

The first quarter was slow and we were able to catch our breath, though it was tough on the business end. Then in April we were hit by a sledge hammer!

I’ll never forget that Sunday. I awoke to the oddest sensation. I felt disconnected and my body wouldn’t stop twitching. The only thing Sheri could do was lay there and hold me. Neither one of us understood what was going on. We had just celebrated our friendship with a really great family the previous evening. I had grilled burgers and hotdogs and we had made s’mores. Life seemed great. Now, I could only wonder if that was my last time to celebrate anything.

Luckily our friend is an RN at a Neurologist’s office and we were able to be seen on Monday. Tests were ordered, including an MRI and we awaited the results.

June 26, 2018

We went to the office to get the results of the tests. Needless to say, we weren’t prepared. Not just 1 incurable disease, but 2. Early Onset Dementia and Hydrocephalus. My son has Hydrocephalus from birth complications and my grandmother had dementia, so I’ve seen the results of both up close and personal.

Hey guys, my wife has had to endure a lot since we married 8 years ago. She had to endure 2 knee replacements (1 that had to be redone, so i guess it makes 3 in total), job loss, and a husband who has been up and down with his back injury, then a heart valve problem and now this.

It isn’t fair! I know, life isn’t fair, I get that! But dang, how much does she have to go through for it to be fair. We have always hoped to spend our retirement years in the mountains of either NC or TN. We even bought some land to build a house on. Now I don’t see that happening. The area is too remote for the medical care I will need as we go along through the years.

Now, getting down to the nitty gritty, or my Christmas wish.

My wife told me one of the trademarks to this disease is a loss of taste. We were sitting in an Italian restaurant the other Sunday when I remarked to her that nothing tasted right. Everything seemed to be bland. I make a killer Chicken Enchilada Soup that has a kick to it, but it is still really good. It tasted like the chicken walked through it when I fixed it recently. The Veal Parmesan that I always loved was tasteless as I sat there and ate. The only thing I enjoy eating any more is sweets, but even then I can only stand them in moderation because after a few bites the sweet part is overwhelming. 

I had really hoped that I would be on the slow end of this disease. Now I’m not so sure, and it scares me sorta. I’m not afraid to die. God, you know that part of it and I know you will welcome me home. Sometimes going home doesn’t sound like a bad idea either when I think of the burden I could become to my friends and family?

And that brings me to my wish this Christmas. This Christmas I want one to remember.

Santa,

I want snow deep enough to go out and make a snowman in. I want to get to ride and see the Christmas lights in all the towns, especially in a carriage along the way. You see, Sheri doesn’t drive at night anymore, and I can’t now either. I want my wife to get the 1 present she has always asked me for that I’ve never been able to deliver. Surely you remember that one, don’t you?

God,

I want you to look after Sheri, especially going forward. You see, she never flinched when we got the 2 diagnoses. As a matter of a fact she started researching and trying to find any way medically that we could make this better. Besides the Mountain Dew, Namenda and lumbar punctures, we haven’t really found anything else. That woman means the world to me and you know she loves You more than life itself. So whatever you choose to do, if you would make her life a bit easier going forward that would be my greatest present. The shop has become her pride and joy, so if you will guide her and make it successful so that she can continue to have a reason to move forward that would be great.

Lastly, maybe to both of you, if you would find it in your hearts to do so, show someone the cure for both of these diseases. There are a lot of brilliant docs out there and I’m sure somewhere a Godly one can be found who would handle your precious gift with love and care. I don’t want anyone else to have to deal with this. The frustrations and confusion continues to grow little by little. I’m glad I can still work for now as it helps to keep my mind distracted from what is ahead of me. If I could be blessed by the gift of healing that would be great, but if not, will you prevent someone else from having to go through either of these?

I know some people see one or both of you as fictional. Me, I don’t. Santa will always be in the hearts of good people, bringing hope for a brighter future and God, well, you’ve proven yourself over and over to me through the years, proving I can be loved even when I could never deserve it from anyone.

Thanks to both of you for all you’ve given me through the years, and hopefully, for many more years to come.

Sincerely,

Keith Moreland