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