Monday, June 6, 2016

Government Funding Needed For A Cure

The other day I turned my profile picture to purple. Nothing happened. I still have dementia.

I must have did something wrong. From what I understand this ends Alzheimers. It's what I have seen. "Turn your profile picture purple to end Alzheimers."

Here's the deal, it won't. I know, I know. It's what you seen on the internet and it is supposed to end this disease. But again, I have this disease and tried it.

Nothing has happened. Could be too soon. Maybe it takes a day or two to end it. Maybe, just maybe its going to take a bit longer.

I suppose people do this for some sort of solidarity thing. I get that. Well, sorta.

Here's the deal. Turn your profile picture purple. Wear a purple shirt. Walk a mile or two to end Alzheimers. And donate money to these organizations so they can end this horrible disease.

See what happens. Nothing will happen. That's what. If I seem a bit cynical here is a few more words that come to me when I see things like turning your profile picture purple.

What. Clueless. Waste of time (three words, sorry). False hope (two words, ditto). Why.

Here are my explanations to each.:

1) What? What in the world would changing a profile picture do to end Alzheimers? It won't. It's one of those well lets do this and everything will be better. It's a feel good kind of thing. Nothing more.

 2) Waste of time. Kinda self explanatory.

3) False Hope. Doing these things is indeed a false hope deal.

4) Why?  Why would you do this? I have no idea.

Here's a challenge for you. Google the color purple and what it is used to symbolize and you will find hundreds of causes that use the color purple for all kinds of diseases and causes.

What I want is people to understand what I go through as a patient. Not what they represent by wearing some color to represent their distain for this disease.

It pretty obvious to me that no one cares for dementia of any kind. You won't find anyone saying "This disease isn't really that bad, it could be worse".

If anyone says "it could be worse", just wait, it will get worse.

I really think you have to be a patient to understand how meaningless this is. I have family members who do this, close friends, and many on Mp do this, change their profile picture to purple.

The thought is what counts. That's it. To me they are saying in our own way we are trying to show support. And that is fine. Just know that no color is going to change anything. Pink has been the color for breast cancer awareness for decades.

Pink didn't do anything. The amount of money spent on research did. And most coming from taxpayers. Government funded trials and research. And these are sadly lacking in the dementia field. Sadly.

But here is something you can do that will mean more to a patient or a caregiver than all the purple shirts or purple lights combined.

Sit with a patient. Just sit with them. If they are in a facility, take time out of your busy life to visit them. If it's only for half hour or so. Most times you don't need to say anything. Just listen and agree.

Then, call or visit a caregiver. Ask them what you can do to make their life more tolerable. Could you run some errands for them? Could you help them with their housework? Could you take them somewhere? Could you just listen to what their day, week, and month has been like?

There is something more powerful than all these catch phrases put together and that is listening. Just be there, and listen.

I have asked every doctor I have ever been to to listen to me. It hasn't happened yet. Sometimes they talk in third persons like I'm not even in the room.

I have said for years now, in my opinion, the only thing that is going to change how we deal with dementia is money. And not donations.

Our Government needs to recognize this disease for the epidemic it is, or will be. It is going to take trillions of dollars, money that no donations will even come close to, to get some sort of drug that just makes our lives as patients more tolerable.

If you give to an organization, God bless you. However, some of your money is going for payroll and that is simply a fact.

Until we unite as a country and demand our government take this disease seriously and spend serious money for research, there will be no change.

How do I know this? Because in the last six years I have watched this, studied how far we have came in the way or research.

We are not one bit closer now, today, in finding a cure then they were twenty years ago. There are more people being diagnosed because there are finally more people talking about this disease.

It is still like in the 60's and 70's when you didn't dare mention the "C" word. Things are better, but just because the next generation of patients is finally coming out and talking about this disease.

And yet, some still won't sadly. You can't fix anything till you understand what is going on. And the brain is the most complex organ in the human body.

If you ask any truth speaking Neurologists they will tell you they just don't know. Alzheimers is a unknown disease. Meaning, people know some things about the disease. But even the brightest doctors will tell you, they just aren't there yet.

And getting "there" could be decades away yet. If a cure was found today it would be ten years or more before it filtered down to patients like me.

And, the cost will be astronomical. I hate being a Debbie downer, but if anyone thinks dawning a purple shirt or changing a profile picture will do anything...well, we have a long way to go.

©  Rick Phelps  2016

Monday, May 16, 2016

There are No Survivors

When you hear someone say:

 "Mom has gotten better the past few weeks, here Alzheimers has actually reversed itself".

"Dad's progression has slowed since he's been on his new medication. It has slowed his progression immensely."

"My husband does things now, that he couldn't do before. Things that he had forgotten. I know he is getting better. I just know it".

"I read where there are new drugs out right now that will slow the progression of Alzheimers."

All of these statements and many, many more I have heard one time or another. And they are truly believed.

It is human nature for us to want the best for our loved ones. No matter what the circumstance.

If you granddaughter was fired for being late at her job, the time clock is to blame. If you brother is losing his house, it's the banks fault. If you hear something you thought was gospel and repeat it, you are doing so because that is what you truly believe.

Most of these claims hurt no one. If you think your loved one is not progressing anymore, good for you. If you think the drugs they are now taking has slowed or even reversed the disease, again, that's your prerogative.

I suppose I haven't had to deal with some of these claims because when I was diagnosed I had known for a few years something was terribly wrong.

And when the official diagnosis came, it was like a relief to me. Since then I have been on a campaign of sorts that deals with reality.

The reality is this disease, Alzheimers, it does not stop progressing. This disease does not some how miraculously reverse itself. And there is no drug out right now to either cure or slow the disease.

How do I know this? Because there hasn't been one survivor of Alzheimers. Not one. The reality is Alzheimers is a terminal disease. Terminal in this case meaning no one survives.

If your loved one has been diagnosed with Alzheimers, they will progress. They will get worse. And in the end they will succumb to the disease.

People who tell you other wise are not bad people. They are just wrong...sometimes it's not ignorant people, it's people ignorant of the disease.

©  Rick Phelps  2016

Thursday, April 28, 2016

Dementia Happened, Ask A Patient

We have a lot of posts lately about your loved one doing something they never did before.

Be it, eating something they never liked before, wearing their favorite coat in the heat of the summer, or drinking their coffee black, when they have used creamer for 40 years.

These things are red lights. Meaning they are things that are so apparent and easy for you to spot.

"Mom loved to cook. Now she can't even make toast right. What happened?"

Dementia happened. That's what happened. I don't care what any body says, this disease effects everyone different, yet so many the same.

What I mean is if you have lewy body, or vascular dementia, or Alzheimer's...whatever diagnosis your loved one is diagnose with, we all deal with many of the same symptoms.

Dementia is as we know the "umbrella" and other types such as Alzheimers, Lewy Body, EOAD, Vascular Dementia are just types of dementia.

In other words, we all suffer from the same thing, just different causes. Vascular dementia is most the time attributed to lack of blood flow to the brain, hence the term vascular.

When your loved one does something, no matter if is putting cream & sugar in their coffee, or forgets the first thing about cooking, we must understand these are symptoms of the disease and nothing is going to "fix" it.

In the whole scheme of things, I like to tell people as alarming as it is Dad now drinks his coffee with cream, when he never did...or Mom puts the dishes where the pans go...all these are little intricacies that are going to happen, yet aren't really the end of the world.

If you are new to this dementia thing, it's a shock that Dad no longer wants to have anything to do with fishing. This to you is a real game changer, but in the whole scheme of things it really isn't.

We think of it as they are progressing, and they very well could be. But sometimes it nothing more than reverting back to what they did in their childhood, or an earlier part of their life.

Many times our loved ones won't recognize you, let alone know you are their spouse. They have no idea that they have any kids, let alone three.

These things, the little things, and the huge differences you will notice are going to happen. Get ready. Cause if they haven't, they are coming.

I can tell you from experience, I don't hoard or hide anything. What I do is put things where I think they belong.

Remember that next time you find silverware in a sock drawer, or milk in the cubbord.

90% of patients are not hoarding things, they are simply putting them where they belong. I have challenged many folks on this. To me, a patient would have to consciously have to realize the item they want to hoard, or hide, and then do that very same thing over and over.

Patients just can't do that. They don't have the ability to to think "I will hide this for later." There is no later for them, thus they don't consciously hide things to retrieve later.

In my opinion, which I can be wrong, but what I do is not hide anything. I simply put things where they go. Sometimes it's right, most generally it's not.

But if I did not do what I am doing right now, explaining that I indeed put things where I think they go, everyone would indeed assume I am indeed hoarding things, or hiding things.

That isn't the case with me, and my guess is most of the time it isn't with your loved one either. We have been told all our life about people hiding things or hoarding them when they get older.

What I am saying is just because this was instilled in you for your entire life, does not mean this is what is actually happening.

I am not an expert in dementia symptoms or what one patient may do versus another. But I can tell you this, I am a patient and as a patient I have sat on my hands in many a symposium chomping at the bit, not being able to get up and explain that what was just witnessed there was, to put it nicely absurd.

I hate it when non-patients are the experts. I always have, I always will. If you car breaks down, do you call a mechanic, or would you call your doctor?

If your standing in a gymnasium, that doesn't make you a basketball player. If you want information on the weather, you don't watch the History Channel.

In other words, if you want information about dementia why would you go to a person who has never had dementia? I am not saying doctors don't know what they are doing...I am saying there are people out there who claim to have all the answers as a caregiver.

They don't. No one does. This is a huge money making business this dementia thing.

Like I said, there's big money in dementia. And people pay sometimes thousands of dollars to get certain speakers in. And not a one of any of these "experts" have dementia.

Not a be careful who you put your money on. There are very good people out there, doing very good things. But there are and there always will be charlatans.

Someone making a buck off of someone else's demise. Just listen to your heart, and perhaps a patient now and then. I will guarantee you won't go wrong...

©  Rick Phelps  2016

Tuesday, April 19, 2016

Can Alzheimer's Be Stopped

There was a special on Nova last night titled "Can Alzheimers be stopped?"

I started watching it, and the one of the first things I heard was the son who was doing this documentary saying that his Mother is not here anymore.

He then clarified it somewhat, but statements like that take away all credibility. When you say that your loved one is not here anymore, what does that mean?

Of course their there. Obviously not in a way that they once were. This is one of the stigmas that go along with dementia of any kind.

Patients have feelings. They feel fear, loneliness, confusion, and on and on. Some of these feelings are more intense, some less.

At any given moment things change with the demeanor of the patient. They can be here, talking one moment and the very next become almost comatose.

What happens here is all caused by having a disease of the brain. The most complex organ in the human body.

The truth is, there is a cure in sight. When is the million dollar question. I have been hearing about a cure in sight since I was diagnosed in 2010 and started paying attention to these things.

However, they are not one bit closer to cure then they were twenty years ago. This is very difficult to hear, but it is the truth.

These documentaries are what I refer to as a flash in the pan. Their on tv, then forgotten about. Only those affected by dementia even watch.

The title say it all. "Can Alzheimers be stopped?" The answer, and I have not watched this show yet, but he answer is no. Not yet.

Someday. Probably. But like I said we are no closer today then they were decades ago in finding a cure.

I suppose I look at this different, being a patient. Caregivers, family members and loved ones want a cure so bad, they sometimes have blinders on.

Here's the deal and I have said this for years. If there were a cure today, and of course there isn't. But if there were, it would be decades before it would filter down to the common person.

First off, the FDA would have to approve this, which would take years. Then, and this is what they don't tell you but only a few would be able to afford what ever drug they have found that does indeed cure this horrible disease.

The concoction they had for AIDS back in the eighties that put people into remission was tens of thousands of dollars a month.

Again, I am not trying to be a Debbie downer here but when I see programs like this they simply are not telling you the whole story.

I am not a doctor, nor am I physic, but I am telling if you were diagnosed today, the chances of them finding a cure in your lifetime are slim and none. When they do find a cure, that won't reverse dementia to those of us who already have it.

I wish these people would focus on making the life of a dementia patient at least more tolerable. If they could come up with something that actually worked for the symptoms of dementia this alone would be a game changer.

But all you hear is about a cure that is coming. Why? Because it sells. I have always said that dementia is big business. There are people and organizations making tens of millions of dollars from this disease one way or another.

The Alzheimer Association is perfect example. They have helped us out immensely in the beginning but have lost their way in my opinion.

To them, it's about the money. When you have a CEO making $950,000 a year, being the head of an organization like this how on earth can anyone justify this as a non-profit organization?

They are not the only ones. The head of the Goodwill makes close to million dollars a year, the head of the Red Cross, and on and on and on.

The reality is the AA is not going to cure dementia. This is a farce. The only entity that can and has the resources to find a cure is the Federal Gov't. Us, in other words, the tax payer.

Until out Gov't gets there head out of the sand and understands that this will become an epidemic, there will be no cure.

It is going to take decades, and trillions of dollars. And the bottom line is no documentary nor any walk for a cure is going to do anything.

In the year 2050 it is estimated that dementia alone and cost of it for patients to be cared for will cost taxpayers over 20 trillion dollars to fund. Through Medicare/Medicaid or whatever Gov't program.

This will indeed break the bank. We as a nation simply cannot afford this. It will collapse the health care system.

The issue here is no one in Washington cares. Period. They will, but they certainly don't now. To get a handle on this would mean tax increases and no Congressman or Senator is going to entertain this idea. That would be political suicide.

The ones who are blowing smoke, who say this will cured by 2025 won't even be in office in 2025. It sounds good now. Plays great for the cameras and for re-election. There is even a well known organization that demands a cure be found by 2025. Demands? This too is joke. Their slogan one year was "Alzheimer Sucks".

Well yes it does. But when you have a slogan that says "Alzheimer Sucks", that to me again takes away your credibility.

I have been to Washington. Sat across the desk from some of the most powerful men in the Gov.t and can tell you without a doubt, they don't care.

They sit there and look at you like you have two heads. They shake their heads up and down but have no intention of putting forth a Bill that would increase the spending for research to an amount that it is going to take. These people do not have your best interest in mind. Period.

I will watch the Nova special. Well, maybe. From what I gather it's more about getting people into clinical trials. Which is a whole other story.

I will say one thing about clinical trials. Whether you are for them or against them, think about this. When was the last time you heard any out come from any clinical trial?

They have them, but I for one have never once heard an outcome on one. I have asked, but have never gotten a response as to what they learned.

Here is where they are on one particular clinical trial. They have this rat. A rat that they say has dementia. That alone should make you say, "What?" But anyways, theres this rat, who has dementia and they give this rat some concoction and it has a positive reaction.

And that means what? Not only do they claim to have a rat that they know has dementia, but after given a drug to it, and not to other rats with dementia, the rat that got the drug seemed to act better. Now you tell me, how does anyone know a rat has dementia.

Common sense tells you they can't even diagnose human beings to a certainty. To me this is a total waste of resources, but again it's a trail.

That isq where we are. You can't make this stuff up. This is why I have said over and over, what we do here at Mp far exceeds any clinical trial or scientific study they are doing on rats.

You may not like what you read here. You may not want to accept what is going on with your loved one, but you will hear the truth here.

No sugar coating. No pampering. We simply don't have time for it. What you need to do is deal with what is happening today with your loved one. Not next month, six months, or six years.

Of course you need a plan. You will need several plans. And most of those plans will go out the window. But if you deal with what is happening today. Tell your loved one you are there and will be. Tell them how much you love them, and do the very best you can to deal with the things that come will be far better off than any documentary will teach you.

There are three simple questions I tell people to ask themselves about their loved one.

Are they safe?

Are the pain free?

Are they content?

If you can say yes to these three questions you are making a difference. And that is all any of us can do. Try to make a difference in the dementia patients life. "While We Still Can..."

© Rick Phelps 2016

Dementia Service Dogs, Pros and Cons

Changes. The one thing dementia patients don't do well with. Every dementia patient has a routine. Even if you don't realize it, they do.

Could be something as small as always sitting at the dinning room table in the same chair, or always drinking out of the same cup, perhaps it's putting their socks on before their pants.

Little things. But these little insignificant things, to the patient keep them grounded. Why? Because we don't do changes well.

It has to do with we are comfortable with what we know how to do, things we have done for decades. Anything new thrown into the mix and it can cause chaos.

Daylight savings time is a great example. It can throw anyone into confusion, imagine what it does to the dementia patient.

The best thing to do as a caregiver to cope with routine is to let it happen. Don't expect or ask the patient to do something they are not familiar with or comfortable with.

I need to know for example if we are going to do something well in advance. In other words, Phyllis June knows not to come home from work and tell me we are meeting someone for dinner.

I have to prepare myself for such a thing. Why? Because I have dementia and the disease makes me this way.

Surprises don't work around here. I have to know exactly what is going on, when and where. I will always forget, but I have to know and be reminded. Because, again of the disease.

The subject of service or therapy dogs has come up on Mp several times in the last few days, and this is very important when it comes to changes.

In my opinion, as a patient, a service or therapy dog is something that has to be introduced to the patient very early on. It's very difficult to get your loved one a dog of any kind in the mid to later stages of this disease.

As intelligent as Sam is, he needed direction for the first couple of weeks. He needed to learn my routine. Which he did in a matter of days.

The problem with service dogs is not the dog, it's the patient. Sam's biggest problem is not doing something he should, it is me letting him do other things.

This will happen. All the training in the world will come down to what the patient allows the dog to do.

I told the trainer in the very beginning of this journey with Sam, that he needed to be trained so that I would not have to work with him.

And, thankfully Sam is. I don't have to get him to follow me, or keep his attention on me. He does this, and has since the very first time we met. He has never left my side.

I did get Sam very early on. And that was the key. You can't expect a dementia patient to work with a service dog to get him to do what he is already supposed to do.

This is where many trainers, handlers, make their mistake. They will tell you that the new owner has to work with the dog. That I can tell you doesn't work.

One of the very first things that is forgotten when getting a service dog is that the dementia patient, the new owner of this animal, has no short term memory. When you get your dog, most trainers will say we need three days for you to train with him.

That didn't work with me, and it won't work with your loved one either. Fist off, their routine I spoke of just went out the window. They now have a four legged animal that will or should be with them 24/7. And they are expected to work with the dog? Not going to happen.

That in itself takes some getting used to. Then even the smallest things, things you never think of happen. The most aggravating thing about having a service dog has nothing to do with their training, the handling of the dog, or any of that.

The most difficult thing is how others do around the dog. Family, the general public when out with the dog is very difficult.

Every time we go anywhere, Sam has his vest on which clearly states he is a working service dog do not pet. Which means nothing to most people.

I have to hear at least ten stories every time we go anywhere about other peoples dogs, how they died, how they act with them, how they look so much like Sam...and on and on.

Parents let their kids run up to Sam, which is very dangerous. Sam does not do running, or approaching me like that. That alone puts him on high alert. Which puts me on high alert, and the stress ensues.

We live in a small community and most everyone around either knows me, or knows of Sam. We have been on the front page of the paper with stories about Sam many times over the years and you would have to be living under a rock not to know about Sam and I.

Every interview I have ever done with Sam I have pointed out he is not a pet when out in public. He is working. He doesn't take his eyes off of me and what is happening around the two of us. Its what he was trained to do and does this very, very well.

When we are at the camper for example, he is a pet.When we are at home, he is a pet. He plays like any other dog would, but he never, ever gets out of eye sight of me. Ever.

The very thing a dementia patient wants to stay away from is being the center of attention. And a service dog does just the opposite. They make you the center of attention.

You would think no one has ever seen a service dog in Red Lobster, or Lowe's, or McDonalds. It doesn't matter where we go, we hear the same story.

They want to know what he does for me, and tell me their life story about the dog they have or had.

This again is very stressful. Imagine going to Walmart and having to deal with this in every other isle. Parents letting their kids reach out to pet Sam, even adults just walking up and sticking their hand out, all the while he has his vest on saying, working dog, do not pet.

Service dogs are wonderful. And I wouldn't trade Sam for the world. But they do create a great deal of stress. The dog doesn't, its the people around him that do.

If you are contemplating on getting a service or therapy dog for your loved one, make sure they understand what is going to happen. This isn't something you want to surprise them with.

Sam has done more for me than all the meds I have taken. He takes my stress level from a 12, to a 3. It's what we have to deal with, with the general public that is the issue.

And most times no trainer will tell you this. And this will cause havoc and chaos to a dementia patient. Not to mention throw them completely off of any routine they had before getting the dog.

Something to think about. Service dogs are a wonderful thing. But they are not for everyone. And the patient cannot be responsible for continuing training of the dog.

That simply won't work. We are dementia patients. We have a brain disease. We are not dog handlers, or trainers. Remember that before embarking on this.

A highly trained service dog can run in thousands of dollars. Well over six to eight thousand is not uncommon to pay for a fully trained service dog.

Do your homework. Work with a trainer at least in your state, or as close to you as possible. Keep constant contact with how the training is going. And get references. This is a huge thing, not to be taken lightly.

We have a dedicated page to learn about Sam and how he came into our lives.  There is where we discuss about service dogs, the in's and outs of owning one and what have you.

As always, Mp is for Support and Awareness. Not everyone can afford a service dog, or has any desire to own one. I wanted to give you an insight on this. For any lengthy discussions, please join Sam's Place, on Facebook. One of our Admins can get you added.

© Rick Phelps 2016

Monday, March 21, 2016

Dementia And Progression

I haven't posted for a while. Truth is things are a bit foggy. Not in a sense of seeing things, but in a sense of understanding what is going on.

Leeanne and I had a long talk about this a couple weeks ago, or it could have been yesterday. All I do know is we have talked.

I set Mp up so when this day came, where I wouldn't know exactly what was going on, others would. Leeanne does, and she has been a God send to me. I will never be able to tell her how we feel about Louis and her both. They are family.

I read a post, a short post this morning from a member who said she had been here some three years but this was her first time posting.

That's the thing about Mp. Sure we want people to engage and post. That's how we learn from one another. But it certainly is not a requirement.

Many of our members don't post for one reason or another. I am getting to fit into that mold. Simply because of the disease.

Over the years I have heard over and over, "How does he do what he does, having dementia? My loved one can't do hardly anything."

Well, I am getting to that "can't do hardly anything" mode myself. I kept telling everyone around me that this was coming. And now it's here.

I am not going anywhere. I just won't be posting as I once did daily. I can recall when I used to do daily video's and post them on here.

That came to a halt probably a year or so ago. Why? The disease. It's always the disease.

Even though I am slipping, struggling, I still have so much more to do. We have a book to finish, I have about a million other personal things I want to do.

But this disease dictates what I will do and how long I will do anything. I could go on and on about what has been happening, but that would just lead to some sort of pity party.

I have undoubtably had the worst three weeks that I have ever had since being diagnosed. And I know this is just the beginning.

We will still be camping this year. I can only pray this is not my last at that also.

Focus. I have none. Common sense. Seems that has gone out the window also. And my memory, well I have no short term, and the long term is slipping away also.

This is what is supposed to happen. One just hopes I can stay where I am today and not progress anymore for a year or more.

It's like someone turned the lights out. I have done some incredible things since being diagnosed. And I have also done some things that are anything but incredible.

Even saying I have dementia isn't helping anymore. Used to be I would have to remind myself of my condition. Now, it's with me 24/7.  It always has been, but sometimes in the shadows.

Now, not so much. So again, I am not going anywhere, physically at least. I am mentally. And no one can go with me.

This is the beginning of the journey I will take alone. There are many things I have not shared with anyone about dementia.

There are things that happen that are just to horrible to talk about or to relive. It's a dark downward spiral. The depression I struggle with is worse than usual. The anxiety of just having the disease gets the best of you, which adds to the depression, which adds to more medication, which adds to more confusion....

Know this. Do what you can now. Don't wait. Don't put off things you have wanted to do. There will come a day when those things are simply not attainable.

Even if it's something small. Take those walks, even if they are just around the block. Watch your favorite movie or shows, even if you can't figure out what is going on. Listen to the songs that you did when you were young.

Take in this beautiful world we have and give thanks to God everyday you are allowed to be here.

There is not much I haven't done. Most things I still wanted to do were border line illegal anyways. I have had a great life. A wonderful family around me. And Memory People. The love you have given could never be replaced. And it will never be taken for granted.

A loving wife, friend, and companion through the good and the bad. I look back and think, yea I did that. Wasn't the best, but I sure gave it my all....and I will continue to do this, "While I Still Can..."

© Rick Phelps 2016

Wednesday, March 2, 2016

Remember, Have A Plan And Another

Cliche's. There are a million of them. One of the best to me is "Behind every good man, is a good woman."

I have been blessed to be married to my sole mate for some 32 years now. There is no words in the english language that explains what Phyllis June means to me.

There's just not. But I am a lucky man. Behind me are not only Phyllis June, our wonderful daughter Tia Nicole Bookless, whom we are so very proud I also have an impeccable woman, Leeanne Chames.

It is often questioned how I do the things I do. Having Early On-Set Alzheimers and do what I do. Those who question this mean well, but they don't know me.

Rarely in my soon to be sixty three years on this great planet have I been known to give up on anything.

I am not a highly educated man. But I knew very early on in life that if I wanted a life different from what I grew up in, it was up to me. Not someone else to give it to me.

So like many others I worked. I went on to further my education. I took some classes in EMS and Law Enforcement and the doors that open from there has lead to where I am right now.

Not immediately, and not without obstacles. I worked 11pm to 7am for many years, having Wednesday and Thursdays off. I worked every weekend and every holiday for decades.

I knew what I wanted, and so did my the love of my life. We worked hard, each of us having two jobs for well over twenty years. Waiting and dreaming of our golden years we would have somewhere where they only talk about snow.

Then things happen. What you ask? Well life happens, thats what. Dementia came into our lives. It isn't a disease that only effects the patient. Dementia effects everyone who is around the patient.

That brings me to the point of all of this. I am indeed slipping. I can no longer tie my shoes. Well, I can but it takes a couple of minutes and I get so frustrated.

Set you shoes in front of you, and tie them. It takes about fifteen seconds or less for both. Now, untie them, and set a timer for two minutes, all the while staring at your shoes. It's an eternity.

People see some of my posts, like the deck we are building onto our camper and think, how does he do that? Well, he doesn't. I have help. Just yesterday for example I was at our camper and couldn't figure out how to make a simple form for our deck.

It just was gone. Like that. I had unloaded all my tools, the generator, the saws, the drills, ect. and I just sat there and looked at them. I didn't know what to do.

This happens with dementia. You don't know when, you don't know how long it will last, but you simply forget how to do some things you have done your entire life.

This sadly has been taking a huge toll on me when it comes to the daily operations of Mp. For a very long time I have not been able to read many posts, because I cannot figure out what is being said.

I sometimes don't comment because I know what I want to say, but I can't put it down in a comment. This has been very hard on me.

I have been telling Leeanne for some time now, that the time that she will be running things around here full time is drawing ever so near. Knowing all along that time has long came and went.

When we Skype, and we do two or three times a week for a couple of hours each time, we go over things that I know I should already know...but I simply don't.

I am not immune to what this disease does to the human brain. But even at that I am thankful. I thank God everyday for what I have, what I can still do, and what he has given me and allowed me to use in his name.

I don't dwell on what I can't do. I try to just move on, and do what I can, "while I still can". That title was much more than a title to a song or book, it is indeed what I have based my life on since my diagnosis.

I will always be a part of Mp. We all will, who choose to be. What we have here is not a group of people struggling with the same thing. It's much more than that.

From the first day you join us, you will see that. And I have laid out this whole thing for someone to carry on, when no longer can. And that person is of course Leeanne.

I am not going anywhere, anytime soon. I just want to make sure that everyone here knows and understands that nothing will change. And if anything does, it will be for the best of the entire group.

Leeanne knows this and you can be sure she will continue as I would or will for whatever time I have left here.

This is not one of these "oh poor Rick" posts and I don't want or need a lot of "I'm sorry's"  There are a whole lot of people on here doing much, much worse than I am.

This is about me losing some of the ability to know what is going on, and you understanding that it will not make one bit of difference.

Like I said, I am not going anywhere. I just want you to know that we have had plans for this for a very long time now. Remember, have a plan, than have another.

We have things all lined up for all kinds of things. The changing of the COO to CEO, in our non-profit, and the daily operations here have indeed already gone to Leeanne.

How long do I have? Well, how long do any of us have? A doctor once told me I was terminal. I could see in Phyllis Junes eyes this was like ripping out her heart.

I looked him straight in the eye and told him..."We all terminal. I am lucky in a way. I can make the best of things. Things others including myself have long taken for granted."

We live one day at a time. All of us. Everything I have, everything I have every done is because of Jesus Christ our savior. HE will not forsaken me. HE will not forsaken anyone who believes.

That is all HE asks. All HE ever asked. I am truly at peace with all of this. Am I scared? Of course. But I am also at peace. A peace that I hope each and every one of you can find.

We will carry on. "While We Still Can..."

©  Rick Phelps  2016