Thursday, March 26, 2015

Still No Progress For A Cure

The last few days have been difficult at best. As a patient, when I do post during these difficult days, some members feel I'm sure I am being negative.
When you read some of my posts and they do come off as negative or unappreciative keep in mind they are from of patient's perspective.
Long ago even before Memory People I made a vow to myself to share with others what I go through as a patient.
Nothing irritates me more then listening to or reading something about this disease from someone who knows little to nothing about it.
Yet this goes on constantly. I've done dozens of speaking engagements where I was the first patient there that has ever discussed anything about this disease.
To me this is unimaginable. There are literally tens of thousands of patients who can and would talk about this disease if only asked.
I am not saying that the so-called professionals do not know what they're talking about. However, if you are a family member or a caregiver for patient do you want to learn about this disease from someone who studied it, or from someone who lives it?
I am not an expert. But I am a patient. To me there's been no progress, none whatsoever, when it comes to research about this disease.
There have been strides, but these strides are going backwards not forwards.
When you read about the latest research being done, working with rats, that tells me everything I need to know about where we are going.
This disease didn't start 10 years ago. Alzheimer's is been around officially since 1909. Yet hundred and six years later there is still little known about this disease.
Well there ever be a cure for dementia? If you believe what you read, dementia will indeed be cured by the year 2025. Ten years from now.
Fact is after the 50 years of studying this disease there are still no answers.
For years now the Alzheimer's Association has had its yearly walks to an Alzheimer's. These too have failed miserably. Sure they raise money, but where does that money go?
I have asked this question many, many times and all I get is this deer in headlight look. If the Alzheimer's Association came out and said "the money raised from these walks take care of payroll and other administrative fees", then I would be satisfied.
Is not my intention to bash the Alzheimer's Association. They have helped us out immensely. But when the CEO of this organization makes over $900,000 a year, there is absolutely no way to justify this.
Through the years I have been asked by many organizations to speak at their conferences or asked to conduct interviews with them.
One of them in particular was interested in me because I am so outspoken. They even went as far as to have a camera crew here our house filming interviews with me.
In the end, our relationship did not last. Why? Because I am indeed outspoken. I tell people what they need to hear, not what they want to hear.
This all sounds well good until what I have to say contradicts with what the organizations claim they stand for.
My number one concern always has been and always will be for the patient and caregiver. If what I have to say ruffles feathers, so be it.
I didn't get into this to make friends or to form partnerships. Some people take what I say and write it off. If it doesn't fit their platform they claim my statements and outlook are coming from the dementia patient.
I had a camera crew here at the house for over three days a few years back. They were affiliated with a producer from the Los Angeles area. He was interested in doing the story about patients in early, mid, and late stages of this disease.
In reality what they were looking for was some sort of drama to put it on film. They actually directed me to stand in front of a mirror and just stare into it.
This of course doesn't happen in real life. In reality mirrors are sometimes covered over because the patient doesn't recognize who they are looking at.
I, of course refused to do this, and I set the camera crew and the producers down and explained them that things are going to be done my way, or they simply wouldn't be done at all.
We came to understanding moved on. Many times you will find people are involved in the dementia business for all the wrong reasons.
I call it a business because it is. Literally hundreds of millions of dollars are made in the field of dementia.
We are all in this together, sadly however some are in it for all the wrong reasons.
Just because I stand in my garage doesn't make me a mechanic, just because someone has a title doesn't make them an expert on dementia.
I will continue to fight the good fight, "While I Still Can..." or as Charlton Heston said, "Tell they pry this from my cold, lifeless hands".

Monday, March 23, 2015

If you Have Met One Demetia Patienet , You Have Met One Dementia Patient

"I hate my life". This is something that you would expect a 13 year old to say. Or perhaps someone who just can't get a break in life.
You wouldn't however expect to hear it from a 50, 60, 70, or even 80 year old to say. Most times, by that time in your life things hopefully are on some sort of schedule.
But you will likely hear a dementia patient speak of hating their life. Their circumstances. Anyone who doesn't understand this, just needs to talk to anyone that has been diagnosed.
Plans are changed. There are no plans. The first thing the Alzheimer Association will tell you is, make plans. Have a plan for the patients caregiving and make plans to do things you want to immediately.
What they don't say, and what they or anyone else doesn't know is, all plans go right out the window. I always say "Have a plan, then have another" because more times than not, you first plan no matter what it is will not work out.
You planned for retirement. You looked ahead to your grand-babies, watching them grow, going to their school plays, taking them on vacation, just having fun with them.
You've made plans for you are your spouse. Take those vacations you have always talked about. Be it thousands of miles away, or just taking walks with your loved ones.
We all have plans, expectations, and a road map of sorts of what we will be doing in our golden years, and even sooner for some.
Then comes the day when you see the word you are wanting to say, but can't get it to come out your mouth. Or you take a walk, where you have hundreds of times before and you can't for the life of you remember where you are.
Names cannot be remembered. Street names, or locations. You have to have everything repeated to you...not because you didn't hear what was said, but you didn't understand what was said.
The job you have done for twenty, thirty, forty, years or more is like going to something you have never done before. The simplest of tasks become daily struggles.
" I know I can tie my shoes, I have done it everyday since I was four years old, but I cannot for the life of me get the bow. How do you do that?"
Some will have two shirts on. Because they didn't realize they already put one on three minutes ago. Some will think they need to brush their teeth, walk into the bathroom and start cleaning the toilet.
Some will have that nest egg they have set aside for decades, only to see it dwindle down to little or nothing, because sooner or later you or someone you work with realizes you cannot do the job anymore.
Everything, and everyone is taking from you. Sometimes for only moments, but in the end, forever. I wish I had a dollar for every time I as my wife what day it is...and this is just before she goes to work.
It doesn't matter in the grand scheme of things what day it is for me, but everyday in my life I have known what day it is. Till now. I haven't known what day it is for so long, I just ask. It's all I can do.
Someone tells me, then tells me again in a few minutes or an hour because I don't have any recollection of even asking, once, let alone dozens of times.
With dementia you will lose everything. You will lose things that have been with you so long you take them for granted. But they will go. Sometimes for fleeting minutes, sometimes they go forever.
I long ago lost the ability to read. By that I mean that I can read, but I don't have the ability to. If I read anything that is over three paragraphs long, I have no idea what was in the first two.
Some have taken this, and said, "Just the other day he said he couldn't read, now he says he does".
People who do this have an agenda. They for lack of a better term, "lump" all of us patients together. If your Dad or Grandpa can no longer drive, how on earth is it that Rick Phelps can?
This can't be. He has claimed to had dementia for over ten years and he still drives? He can't have dementia.
I get this all the time. I can do things that some can't, so for whatever reason I either don't have dementia, or it has even been said I am faking this disease.
What kind of person even thinks that someone would want to fake the effects of dementia? How does one get to that point to where they feel that someone doesn't do or act like their loved one, so something has to be amiss.
You have all heard, "If you meet one dementia patient, you have met one dementia patient."
Meaning everyone is different on how this disease effects them, when they first got dementia, and how fast if has progressed. Some progress you would swear right before you very eyes, and some are in the same condition for years.
Why? There's your 64 thousand dollar question. Why? If someone tells you why, question them. Because I am here to tell you know scholar, no scientist, no Neurologist, no one knows why.
All I can tell you, all I can describe is what I go through today. This morning. If I tell you what this evening will be like, it's a guess. Because no patient knows what is coming, nor do they know if it will last.
The one thing I can tell you that normal is no more. There is no normal, only the "new normal".
Meaning things can change in minutes. Someone who wouldn't raise their hand to another human being, now strikes out at those they love daily. They will say words you never even know they knew.
And they will do things that is completely out of character, because they have a brain disease. They have dementia. And that you can be sure of.
Everything else is a guess. A calculated guess at times, but still a guess. I have no idea what tomorrow brings. As I sit here typing away, I have no ida what tomorrow is....or today for that matter.

Monday, March 9, 2015

Dementia Patients Have Other Medical Problems

I was diagnosed with Early Onset Alzheimer's Disease in June 2010, at the age of 57.
I take 11 pills daily, a whole host of medications, to which none of them are for dementia.
I take medication for anxiety, I take medication for depression, and I take medications to help me sleep. I take medications for nightmares, and I take medications for my nerves.
At this time I am on no medications for dementia. Why is that? For me it's simple, the symptoms of dementia are as bad, if not worse than the disease itself.
The three main medications directly linked to dementia are Aricept, Namenda, and the Exelon patch. None of these three slow the progression of dementia, as many claim.
Many times the symptoms of dementia are overlooked. The depression, the anxiety, the fear, the loneliness, the stress, the lack of sleep, the lack of being able to make decisions, just to name a few.
I cannot imagine anyone having dementia and not taking medication for its symptoms. Yet many times the focus is on medications to slow the progression, which again there are none.
The one thing the patient absolutely has to stay away from is stress. This of course is next to impossible. The very fact that the person has dementia it is extremely stressful.
Life in general is stressful, couple that with having dementia, and you have a volatile situation. Still, many times caregivers and family members focus on medications to slow the progression of dementia.
One must remember that even though your loved one has dementia, they still deal with a whole host of other issues.
Dementia patients get the flu, they get pneumonia, they get UTIs, they can have strokes, heart problems, diabetes, and shingles. The get colds, they get headaches, they are indeed susceptible to any and all other medical issues that everyone is.
What I am trying to explain is don't get hung up on your love one has dementia and that is the only medical problems they may have.
As a patient I can tell you there is absolutely no way I could ever even begin to deal with this disease without the medications that I take every day.
And like I said, all these medications are for the symptoms of dementia, not dementia itself.
I don't understand how it caregiver can do what is necessary day in and day out and not be on some sort of anxiety or antidepressant medication.
No one needs to be in a zombie state. However dealing with dementia as a patient or a caregiver stress, anxiety, and depression are prevalent.
There is no doubt that all these symptoms will happen, the only question is to what degree?
We never tell anyone what medications their love ones should be on here on Memory People™. This is the internet and the only information we have to go by is what someone posts.
Just remember the symptoms your love one goes through can be far more devastating then dementia itself.
How do you know this? Because a patient told you so...there is much more to be concerned about then dementia.


Monday, March 2, 2015

Dementia, Regret, and Grief

People are always wondering why they have the feeling of regret when their love one passes.
Everyone loses a loved one goes through this. It is not unusual to ask yourself "could I have done more?", "what if I had done this, or done that differently?"
Questioning if you did enough for your love one is also part of the grieving process. This happens all too often anytime their love one. passes. 
It certainly doesn't have to be from dementia related issue. If your loved one had been suffering from terminal cancer for instance, these doubts and feelings of regret also happen.
There are seven stages of grief:
Shock and Denial
Pain and Guilt
Anger and Bargaining 
Depression, Relfection, and Loneliness 
The Upward Turn
Reconstruction and Working Through
Acceptance and Hope
There are many different ways of grieving. Some people grieve for days, weeks, months, and even years.
The losses we have here on Mp, are devastating. There isn't a that day that goes by that we don't lose two, three, even sometimes more patients here.
We tell our members all the time after suffering a loss of a loved one, sometimes this is when you need support the most.
Many times one of our members lose a loved one, the first thing they do is thank us for what we have done for them and then talk about leaving Mp.
All of this is fine, but no one ever needs to leave Mp. You must always do what is right for you. But leaving a support sites like Mp, because your love one has passed away is never good in my opinion.
Like I said, the grieving process starts immediately after one passes and many times that is when you need support the most.
So if you find yourself questioning "did I do it enough?", Take some time, all the time you need, but we will be here to support you through the grieving process as well.
Once you are a member here, you are welcome here forever. The support process we offer doesn't stop after the loss of a love one.
You have simply moved from the caregiver role, to an advocate role. When you are dealing with a disease where there are no survivors loss is unavoidable.