I've been thinking...

Comments on the Future of our Websites

2006-06-11T09:18:00.000-07:00

I'm the webmaster of two websites which serve those diagnosed with a number of different movement affecting neurological diseases and their caregivers. We try to supply information, knowledge and support that is sometimes hard to find online.

Our oldest is the PSPInformation website at http://www.pspinformation.com. This website was started a number of years ago because of a need - my need - for support and information about the disease called Progressive Supranuclear Palsy (PSP).

Later we discovered that much of the information useful for treating those with PSP had been originally written for other diseases and so Neurosy.org was born to help supply support and information for all movement affecting neurological diseases. This website is at http://www.neurosy.org.

My personal need for information came because my wife had been diagnosed with PSP after being previously diagnosed with Parkinson's Disease. I wanted to try to help her if help was indeed possible - and that required knowledge on my part.

I was her only caregiver for over 10 years - eventually she had to go to a nursing home but being her advocate there required much of my time. She died of the complications of PSP in 2001. She simply did not have the strength to continue.

When I began the websites I knew nothing about creating websites at all. I'm still learning.

And I'm still the only person involved in the endevour.

We are now at the point where we must either grow or die.

I'm not getting any younger. If we are to continue others must come forward and agree to help us continue to provide and improve the information and support found on Neurosy.org and PSPInformation.com.

I would love to be able to offer to pay someone for their efforts but I can't. I have donated thousands of hours over the years to this effort myself without taking any pay for myself. For years all costs came out of my thin pockets.

We can not continue as we are now.

We have many problems in search of a solution and we need help.

Some of the problems include:

Finding a way to provide a constant and continuing source of funds to pay the financial costs of maintaining these websites and providing other services.

Providing the leadership needed to continue this effort if something happens to me. It should not be a one-person organization.

Acquiring editorial help to concentrate, simplify and improve the handling of the information we now provide and to add other information as it becomes available.

Having help in hosting our chatroom and in moderating our PSPInformation forum.

We have the need to form a non-profit organization so that we can apply for tax-exempt status, write grant applications and to work to help develop viable treatments for various neurological diseases.

We would like to begin a newsletter and to be able to host the websites ourselves. There are things we would like to do that we cannot do now because of the bargain-basement web hosting we are using.

So far this year (till June 11, 2006) the total amount offered to help pay for what we do has come from three donations - the total is $250. We appreciate every penny and make sure we get full value for each and every one, but it doesn't very far.

These donations have been used to pay our server provider for the rest of the year and on until April of 2006. So the websites will continue until then at least.

I intend to continue working on these sites until sometime this fall when I must decide what our future will be. If things look then like they do now we will close sometime in April of 2007.

What is a cure for a neurological disease?

2006-06-07T06:41:00.000-07:00

Sunday June 4, 2006

A TV commercial was on CBS this morning sponsored by a drug maker. It showed a scientist (probably an actor) who said she is working for a "cure" for Alzheimer's and is very close - she cares because her Grandmother has been diagnosed with it.

A lot of people are using the word "cure" now for what now are basically untreatable and unstoppable brain diseases.

So it made me wonder what they mean by "cure".

The dictionary defines "cure" as it pertains to health as:

1. Restoration of health; recovery from disease.

2. A method or course of medical treatment used to restore health.

3. An agent, such as a drug, that restores health; a remedy.

Over all it's a pretty good definition.

Now, let's apply it to the neurological diseases we focus on our Yahoo forum and on the PSPInformation/Neurosy websites.

I'd like to know what the word "cure" as used by the drug companies
and others means to you.

Think about it a bit. How would you describe it?

Would new medications that slow or stop the progression of the diseases be thought of as a "cure"?

If the diseases could be "controlled" would that be a cure?

It seems to me that:

Before cures are possible we need to be able to diagnose the diseases with a greater degree of certaincy.

We need to understand the causes and risk factors for acquiring these illnesses.

We need to have some way to slow and/or reverse the progression of the diseases.

There are many more needs that need to be addressed - not the least of which is more knowledge about the brain and its illnesses.

My Personal Opinion about a Cure

Let's talk a little about what a cure would be for PSP, Alzheimer's, Parkinson's and the other assorted tissue damaging diseases of the brain.

First, the symptoms of all these diseases are caused by tissue damage being caused to some specific area of the brain. We don't completely understand the processes including what causes it or what really causes the "cause."

We do know that the symptoms of the diseases are different depending on which parts of the brain have experienced tissue damage. The reason PSP generally has symptoms not experienced with Parkinson's it that with PSP additional areas of the brain are damaged.

Which brings up the question of whether PSP truly starts as Parkinson's and as the tissue damage spreads to other parts of the brain becomes PSP or whether it has been PSP from the very beginning but hasn't shown all the symptoms.

Looking at the human body we find that up to now Medicine has not known how to replace damaged tissue parts except by surgery and transpantation. You take a part from someplace else and replace the defective part. This becomes quite difficult when the defects are in the brain.

Hopefully eventually the use of stem cells will revolutionize health care.

We've been promised for instance that Medicine will let us grow a new kidney or liver to replace a diseased one. Would it also let us grow new brain tissue? That is an important question. An additional question is when would we want to?

Let's consider Alzheimer's as one example. The disease attacks the part of the brain that stores recent memory and the things that make us the individuals we are. If we could physically recreate these diseased areas of the brain somehow, how can we reprogram them to recover what has been destroyed by this terrible disease including a lifetime of acquired knowledge? If we couldn't then everyone who had the same "cure" would be the essentially the same "cloned" person and there would be no individually. We still would not have replaced what makes each of us different from any other.

So do we really want that? Wouldn't it be have been much better to have prevented the disease in the first place than to "cure" it after it had done its damage?

So what is a "cure"? Can some pill or supplement replace tissue that has been destroyed - especially when it is brain tissue?

Sure, we may find something to slow or stop the progression of these diseases eventually and thus help those with the diseases lead a more normal life. But this is managing a disease and not curing it.

If you lose a leg for some reason you can learn to walk again with an artificial leg - but again this is managing the problem, not curing it.

So why are we being promised cures for the various tissue destroying neurological diseases.

It sounds great at first until you start thinking about what is involved and the possibility of it ever happening.

We need better education, knowledge about the risk factors and causes, better means of diagnosis, a means to prevent the diseases, improved disease management etc; much more than we need the mythical "cure" we are promised.

Just my opinion.

Welcome to my blog...

2006-05-09T06:18:00.000-07:00

Those who truly know me realize (perhaps to their sorrow) that I can be highly opinioned at times. Even so I try to listen carefully to opinions that are different from mine and on occassion I've been known to change mine due to my receiving new information.

And so after thinking about it for a good while here I am online with my own blog.

I know I'm supposed to tell you now what I'll write about. Truth is I don't really know. I think we'll go in a number of different directions eventually.

For those I've never met my name is Ronald Ritch and I live in Charlotte NC. I'm the webmaster of several webpages - some are active and some are awaiting me to give them some attention.

The two main websites are http://www.pspinformation.com and http://www.neurosy.org. They were created in that order.

PSPInformation.com was started to provide support and inbformation for those with a rare neurological disease called Progressive Supranuclear Palsy. It's best described as a cross between Parkinson's and Alzheimer's disease - it has some of the symptoms common to both.

My wife was diagnosed with the disease and for over ten years I was here only caregiver. The disease has no viable treatment that will either lessen the symptoms or slow its progression.

Along the way I found that it appears that many neurological diseases are inter-related and that information originally created to apply to one specific disease had applications that could be shared by many. And so we developed Neurosy.org to cover these non-PSP specific subjects.

In truth both websites generally share the same information - only their home pages are different.

So I suppose this is enough for a first posting. I'll be back - let THAT be a warning to you.

Ron Ritch