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Thursday, February 26, 2009

Rare Disease Day

This Saturday February 28th is the first international Rare Diseases Day. I am not sure what will actually happen, but the day has been declared and so named to "focus attention on rare diseases as a public health issue". This is the first day that the event has been officially recognized in this country. There are also over half the states that have issued proclamations recognizing the observance. Why should I (or you) care. Well, in my case I am living with the facts and effects of a rare disease every day. My wife has a rare disease called Multiple System Atrophy, or just MSA. MSA is one of almost 7,000 diseases that are classified as officially "rare". To attain this designation the disease must affect less than 200,000 people. At this level of affliction, rare diseases do not get the medical, drug, or research attention of higher profile illnesses. However, with 7,000 different diseases, there are between 25 and 30 million people in the U.S. alone that are living (and dying) from these little known diseases. You can learn more at: http://www.rarediseases.org/. I am a member of NORD, the National Organization of Rare Diseases. They are the proponents and sponsors of the Rare Disease Day. They have also helped to put into place laws and regulations that helps drug companies get money and grants for research into medicines for rare diseases - aka "Orphan Diseases". Orphan Diseases are so named due to the fact that drug companies may have done research on or even discovered drugs that have some efficacy treating rare diseases, but do not follow through due to the fact that the market for them is so small that it would not pay off (hence they "orphan" the research/drug). Although I am not living with the disease and its symptoms personally, I can tell you that going to see anyone in the medical field for anything, other than the primary doctor that is treating you for the disease, is very frustrating. MSA is a neurological disease, but it is amazing the number of neurologist that have no real knowledge of it. A doctor in another field of study is usually not aware of the disease or its symptoms at all. That can mean a visit to the emergency room to check out the aftermath of a fall can turn into a hours long dissertation on the symptoms of the disease to avoid being admitted for something that we know is normal (at least in our world). This type of thing is what NORD and Rare Disease Day is trying to work to help. If you know anyone in the medical field to tell, or can get any attention paid to Rare Disease day - please do so. 25+ million Americans will thank you.

Sunday, February 22, 2009

Aren't the penguins lovely this year?

As I told you in previous posts - I am worried for our country and its'/our future. But, as I said then, not for the same reasons most people are. Yes, I have severe worries about our economy. It pains me greatly to see the current government abandon the policies that have made this country great to adopt the failed system of socialism. But, that is not the point of this post. I just read where an "eminent British economist" said that we were doomed. "Why?", you might ask. Because IF the global warming continues (he missed the memo about how the earth has cooled over the past decade), IF the average global temperature rises 6 - 8 degree Fahrenheit, and IF the ice caps have significant melting (he missed that memo too - the Antarctic cap is thickening, but...), THEN there COULD be a massive migration of people the likes of which we have never seen. This would cause massive and extensive world wars as countries that were not too hot turned away those people from those that were too hot. News flash - IF aliens come down tomorrow, IF they have the weapons to destroy the earth, THEN we COULD all die! IF the lower primates somehow get the knowledge to build an atom bomb, THEN we could all die as well. What really amazes me about all these doom and gloom global warming/climate change types is that the one thing they all have in common is the need for the wealthy countries of the world (ESPECIALLY the U.S.A.) to give lots and lots of money to them and their cohorts. We also need to give money to the countries that stand to be all desert or underwater if the seas rise massively and the rain/weather patterns change drastically. Our money is always the answer along with us changing our entire way of life. If we just eat vegetarian, ride bicycles, and wear hemp clothing - all will be well. (AFTER we have given all our money to the poor countries - or actually to people who say THEY will give it to them - no worries) If you care for the U.S.A and its' future, along with the future of the planet - do NOT let the doom and gloom, global warming/climate change nuts mandate CO2 emissions or anything else. An interesting thought - Except for what has been put here by meteorites and such striking the earth, all the carbon here on earth has been here since the earth cranked up. Physics tell us that we don't get rid of a thing, we just change its' state. The evil carbon we are releasing into the atmosphere, at some time was there. Trees sequester carbon. The ocean captures and RELEASES more carbon in a year than mankind has in our pitiful existence (that is not a scientific statement, it is based in fact - but not meant to be an actual accounting of the carbon sequestration of the oceans) IF there is global warming, or cooling for that matter. Any of mankind's actions (short of setting off a couple of large nukes) are NOT the cause. Study this yourself. I have done hours and hours of study on this subject. If you get by those with their hands out for money - this is a no brainer. The earth has been MUCH hotter than it is today (and without internal combustion engines around). The earth has been MUCH cooler than it is today. (without the Kyoto protocols). I have several posts on this blog with references. Google - global warming myth or similar and see what you get. Now, I will admit, some of those sites have axes to grind as well. But, if you study - I think you will agree with me. If you don't want to study - just take my word for it. Call, write, or scream at your elected officials and tell them NOT to take away our prosperity for a non-existent problem. Later, gotta go check on the banana trees in the backyard.

Thursday, February 12, 2009

Aardvarks on steroids

"How much can I git for a dolla?" Man, if I had a dime for every time I heard that one! I was just thinking about the summer I spent with Uncle Travis. He was a strange man, physically and socially. However, I had six weeks I'll never forget. Uncle Travis was born with one leg six inches shorter than the other. Now that was no big deal in most cases, but when he got excited or angry he tended to go in circles. He was an ice cream truck driver. Travis' Treats - Frozen confections you love to eat! That was his slogan right there on the side of his truck. Now Uncle Travis was not a fancy man, nor was he wealthy. He blew all his money on the cock fights every Saturday night - but that is another story. Travis did not stand on a lot of ceremony. His ice cream truck was basically a pickup truck with a plywood building on the back. He never put in refrigeration, so he used a lot of ice and dry ice to keep things frozen. All the kids knew Uncle Travis would start going in circles if they made him mad. So, being kids they would do their best to infuriate him every chance they would get. Almost every day, some kid would be elected by the others to not pay for his ice cream. That was sure to get Travis riled up. He would start sputtering and wobbling on that longer leg and the fun would begin. The kid would run, and Uncle Travis would head after him. If the kid timed it right and waited until he was seeing red, Uncle Travis would have trouble even getting out of the truck. Soon he would be spinning like a top on that short leg with us all splitting our sides watching. Good times. Now Uncle Travis did help me with one of my first pets. After the loss of Steve, the monkey, to the freak skiing accident; I had wanted another pet. (for the Steve saga, see here - http://justsomeposts.blogspot.com/2008/04/even-more-memories.html) Uncle Travis helped me pick out one. We went to the flea market and got a Brazilian hedgehog. At least that is what the guy at the flea market said. I always thought it was just a hairy rat. I called him Grover. Grover was pretty cool, whether he was a real Brazilian hedgehog or not. I kept him for the rest of the summer. He was my going away meal. Grover roasted up real good. I will leave you with this thought - Do concert musicians get pianist envy?

Thursday, February 5, 2009

Fancy Schmancy

I spend more nights in hotels than most people I know. The majority of them are middle range to the better of the lower range types - my current favorites are Hampton Inns and Comfort Suites. Occasionally, I stay at nicer places - I am writing this from the Hilton Waterfront Resort on the beach in Huntington Beach, California. I have stayed at a lot of Hyatt Regency, Westin, etc type places as well. I have some observations and comparisons from these stays. First, it amazes me, but is proven out over and over again - the more the room costs - the more they nickel and dime you to death (I use that as an expression only - it is really ten and twenty dollar you!!) For example, I am writing this while sipping on a $2.69 (pre-tax) 20oz Diet Coke. I have my computer hooked in to the Hilton wireless network at $12,95 a day. This morning I had a $20 breakfast. Now before you think I went wild and ordered the steak and egg extravaganza, let me clarify. I had the fruit plate. It was a pretty large plate with a pretty small amount of fruit on it. Now, it was good. It was fresh. It was nicely presented. But, it was NOT worth $20. However, I had no real choice. They had a granola and yogurt deal for about the same, but everything else was more. I did get an orange juice which may have been half the price ( I am not sure I ever saw the individual price for orange juice), but still.... I go to my Sleep Inn or Comfort Suites, or Hampton, etc. I get goodies. The last stay (a Hampton I think) I was offered a freshly baked cookie (or 2) at check-in. I took a free apple and a banana from a nice display they had set up. If I had been so inclined, they had a popcorn machine in the lobby with freshly popped corn and bags ready to go. I went to my room and signed on to free wireless, high speed internet. The next morning, I went down and had my free breakfast. I am not talking about a danish and a cup of coffee either. It was breakfast. I could have had waffles, bagels, danish, muffins, hard boiled eggs, toast (various), various cereals (which I did), and several selections of fruit. They also had sausage links. Again, this was FREE (actually, it was included in the price - but the price was less than $100 - this place is over $200 a night!) The more you pay, the worse it gets. This place charges for phone calls - even local ones. There are bottles of water sitting in two areas that have signs that try to get me to open and drink one for only $3.69 a liter. I am not impressed. I have been able to resist the water and I use my cellphone for calls. I have paid $25 for internet so far; and will pay another $25 or $37 prior to leaving; but I need that for working and entertainment. I have bought a diet coke for $2.69 + tax. I did buy a $4.99 bag of trail mix. (which would not get you very far down any respectable trail - it was not very large) I have had a $20 breakfast and a $24 lunch (a chicken sandwich). They have made their money on me. Just more ramblings from an ever-aging guy that likes and respects free stuff.

Tuesday, February 3, 2009

Headline of the times

Swiss Ban Germans From Nude Hiking in Alpine Town Monday, February 02, 2009 A Swiss village is trying to ban an army of nude German hikers who invaded their picturesque corner of the Alps. Officials in the town of Appenzell introduced a fixed fine for people found hiking in just a pair of boots and a backpack after a German nudist organization promoted “nature” walks for its members. What is this world coming to when a German can't take a nude hike in Switzerland?