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October 22 ALS research updateThis was published yesterday. A bit of encouragement.
October 21, 2009
SAN DIEGO - San Diego researchers have found a way to slow the damage done by Lou Gehrig's Disease. The disease causes neurons in the body to degenerate, which leads to paralysis and death. People who get the disease typically die within five years. But scientists at UCSD and Scripps Research Institute have identified an enzyme that can bind with motor neurons to slow their degeneration. Don Cleveland with UCSD Medical School says tests in lab mice show this enzyme therapy would only add a year or two to the life of a person with Lou Gehrig's disease. But he says this could be just the beginning. "It tells us that we can have a real effect," he said. "It's a step forward, and there are several steps to go." Cleveland says the next steps include learning whether different applications of the enzyme might make its effect more potent. Other researchers are trying to reprogram stem cells to replace the motor neurons that are destroyed by Lou Gehrig's disease. September 27 Summer 2009Normally life yields significant material for me to write about. Regrettable I’m finding ALS has slowed our life down enough that not as much has been happening. Anyway here is this summer’s reportable Smiths of Georgia stuff. The two big events were the passing of Linda’s father and Lexy getting her license. Of course Linda father’s death was sad. It had been the last few years that the two of them reconnected after many years of estrangement. It was good they had this time together. Lexy got her license and quickly adopted my car as her own. Her logic was because I no longer drive the extra car was hers. Female logic starts really young! Well ten days later she totals the car, guess who it belongs too now. By the grace of God, seat belts and air bags no one was hurt. Dani has moved up to high school. Within two weeks a seventeen year old boy wanted to take her out. She’s fourteen. NO! was the answer. This stuff makes me crazy. I’ve added a couple assistive devices that keep me somewhat independent. The Toys that come with this disease gain sophistication as my symptoms progress. I’ll do a separate entry on the toys for PALS (person with ALS). July 28 ALS - Stem Cell InfoThere are a couple forums I hang out in with other folks with ALS and their caregivers. One of the PALS (person with ALS) posted the below in response to a question about why stem cells are more effective with heart rehab then with the things involved in ALS. I thought it was a good overview of the challenge ALS poses. A PALS Post: I am no expert but from what I have read stem cell treatment for regrowing motor neurons is still a way off. Blood cells have been replicated for years now and are effective treatment for many diseases. Heart muscle cells are also a much less complex cell and it seems there are methods developed to regrow these cells were they are needed. Stem cells have even been effective in treating damaged myelin sheath, the insulator so to speak, around axons of the neuron cells, but this is still not at all the same as regrowing neurons to control muscles all over the body. Motor neuron cells are the cells which die off at an accelerated rate in ALS. These cells connect the central nervous system with the muscles sending electrochemical signals causing the muscles to react. These cells have a long filament like extension called an axon that allows a connection from the spinal column or the brain to the muscle. As you can imagine the axon can be quite long extending from the spinal column to the feet. As people age these cells die off naturally but many survive until one is even 100years old. The body does not regrow muscle neurons naturally. By the time a person is a year old he already has all the motor neurons he will ever have- its all down hill from there but with ALS it is much faster, like a free fall in some cases. Recently scientists have been able to culture neurons from skin cells. Skin cells that have that ability are called pluripotent stem cell as they have the ability to develop into various types of cells one being neurons. This has been a great step but to make these newly cultured cells work they some how have to make all the right connections when put into a persons body. Another problem is growth rate. Axons grow naturally at a rate of about 1mm per day so to develop connections at distal points could take some time. If neurons die off faster than they can be replaced this treatment will not be a cure but may slow down the progress of ALS. If a cure were found for ALS this treatment could restore lost function. This is a very simplified explanation. There may be some tricks scientists may learn that will speed up the process such as using stem cells to repair dying neurons. Other types of stem cell treatments may have a peripheral effect on ALS symptoms. If I am misinformed I stand to be corrected (I am no scientist).
July 07 Treatment Update IIIt’s a rare occurrence that my traditional and alternative Doc’s agree. Both camps concur that environmental factors play a role as a cause of ALS. Our continued search for the best way to remove toxins has brought us to my newest treatment plan, one that uses chelation.
Now I must say every doctor I’ve seen has tested for heavy metals. And all, whether traditional or not, have been negative. Until now. So what changed? Our new clinic agreed to follow a process developed on Hilton Head Island. Which is ironic as we lived there when I found out I had ALS. Besides taking samples from every orifice, you actually chelate for two weeks before they do sample collection. Apparently toxins are tricky and can hide. Chelating for two weeks flushes them out for detection.
Six weeks later all the test are in and we have a sit down with my Doc. He rummages through all the results and declares “you have elevated levels of copper, aluminum and lead. He said this as if this should mean some thing to us. My only thought was I’m rust resistant.
He goes on to say I have some stuff in my system that are kind of common, but he wants to go after them with antibiotics just in case.
With this we are off to the races fighting toxins and boosting immune systems. July 06 Doctor Knuckle HeadMy peg line was replaced today. The Doc just crabs the old tube in his right hand, puts his left hand on my stomach and says, “this is going to hurt a little”. No pain killing stuff offered and I know they have some around the hospital, SOMEWHERE. And he yanks. @#&%*$@, a LITTLE. If that wasn’t enough, he has to stick a new one in the throbbing bleed hole he just made a LITTLE tinder. Oh my, I think I levitated above the bed. It was the most painful two minutes, ever.
I still want to beat the man silly. |
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