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

Friday, March 29, 2019

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
 

Tuesday, March 19, 2019

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!!

Saturday, March 9, 2019

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!!

Friday, November 23, 2018

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