Monthly Updates

EDITORIAL OCTOBER 2008

A number of PALS have expressed concern that I am no longer updating this website and perhaps I am suffering the debilitating effects of ALS/MND. Neither of these things are true.

I have been declared to be "showing no obvious symptoms of progressive ALS/MND". As often as possible I correct, add or remove links and articles on this site as necessary. Feedback on broken links from this site's users helps me a lot. Please email me to inform me about any broken links you may find. This helps everybody that uses the website.

An old spinal injury has worsened in the last few years and nothing I and the neurologists have tried so far has improved my situation - and believe me, I have tried everything! As with my ALS/MND research I shall just "keep on keeping on" until things improve.

Long term disabling illnesses can have a disasterous impacts on one's lifestyle, including the ability to earn an income. This is the position I find myself in and my immediate goal at present is basic survival.

I am lucky to live in a country that provides a disability allowance but the allowance is increasingly insufficient as the cost of living spirals higher. We are financially far worse off now than five years ago and in a reversal of roles, for several years I have been caring for my wife who has disabling systemic illnesses that are difficult to treat.

For fourteen years I worked, researching and helping PALS when and where I could without pay and subsisting on the disability pension and help from friends and family. I cannot thank them enough for their help, financial and in every other way, but I can't expect them to be there all the time to support my wife and I financially.

Even the average family is finding it difficult to keep up with the increasing cost of living so people in my position need to devote time, when physically able, to earn extra income under very difficult circumstances. That is the reason I can no longer devote as much time to this website as I would like.

But, as I quipped several years ago, "despite the ever increasing cost of living... it remains surprisingly popular!"

Be well and happy.

Steve Shackel October 2008

Editorial April 2008

This is a significant update insofar as it is the anniversary of the 13th year since this website was first created. Back then I was proposing that using antioxidants might be a way to slow the oxidation that had been observed destroying motor neurones in people with ALS/MND.

I have learned a lot since then. Whilst taking an appropriate combination of antioxidant compounds seems to slow the rate of neurodegeneration in some PALS, the use of antioxidants alone will not "cure" ALS/MND.

I researched ALS/MND for about a year after being diagnosed before gaining internet access. That means I deteriorated initially then improved and stabilised over that fourteen year period. Normally at this time I have a full neurological assessment but that was done a little earlier and with a different neurologist, who declared that he would not have guessed that I had once been diagnosed with ALS/MND. The annual checkup therefore seemed less relevant this year.

Other than extensive pain from nerve irritation/damage from an old spinal injury my general health, and particularly my neurological health, seems to be stable and about average for a man of my age. I would like to be able to exercise more than I am able to but for a person twelve years past their predicted "use by" date I am doing very well!

So much more is now understood about ALS/MND and gaining access to that knowledge is so much easier than it was 14 years ago that the future for PALS worldwide looks better than it has in the last 150 years. Sweeping changes have occurred and are still occurring in medicine with the mapping of the human genome and astonishing advances in molecular biology, stem cell research and other promising areas of research.

I would still recommend a regimen of antioxidant supplementation, improvement of liver function and increased hydration for any PALS. It seems to have worked for me and the several hundred others that have contacted me to say they have followed a similar approach and benefitted.

As always, I believe that a cure for ALS/MND is close or may even already exist and only needs to be made generally available. Until then, keep on keeping on.

Steve Shackel 1st April 2008

Abnormal Gene: Toxic Cause of ALS/MND

Australian scientists headed by Prof Garth Nicholson from the ANZAC Research Institute believe they have discovered what causes ALS/MND.

An abnormal gene has been shown to kill the nerves from the brain to muscles in the body. It was found that a protein called TDP43 was present in large amounts in the spinal cords of people with ALS/MND and dementia, which can also occur with ALS/MND.

It was not known whether the TDP43 protein was trying to help the body recover from the disease or was actually poisoning the body. In families that have ALS/MND with a mutation in this gene, TDP43 seems to cause ALS/MND.

Many people have thought that ALS/MND might be caused by an environmental poison but it has been demonstrated that it is a poison in the body itself actually becoming dangerous and leading to the death of motor neurones.

If this is indeed the protein that's causing damage in the majority of patients with Motor Neurone Diseases, reducing the TDP43 protein could potentially prevent or cure the disease.

As ALS/MND is probably many diseases with wide variations this may reflect all different varieties of ALS/MND with different mechanisms. But if there's an underlying mechanism that's common to all, and because this protein is generally found in all MNDs, this does offer hope that a general treatment can be found for all types.

For more info and interview with Prof Nicholson.

This is wonderful news and Prof Nicholson, et al, are to be congratulated but, for the record, I would be astonished if this protien alone is the sole cause of such a variety of neurological symptoms. Steven Shackel March 2008. [See My Theory for why I think this is so].

Statin Cholesterol Lowering Drugs May Cause ALS/MND

Neuroscientist, V. Meske, reported in the European Journal of Neuroscience a study about the ability of statin drugs to cause neuronal degeneration. Statin drugs are designed to inhibit cholesterol synthesis [in the liver] by their effect on the mevalonate pathway. A consequence of the inhibitory effect of statin drugs on the mevalonate pathway is the induction of abnormal tau protein phosphorylation.

Tau protein phosphorylation goes on to form neurofibrillatory tangles, long known to be the prime suspect in causing the degeneration of Alzheimer's disease. Scientists are finding that this mechanism appears to be true for ALS and many other forms of neurodegenerative diseases.

Statin drugs include Vytorin, Lipitor, Zocor, Crestor, Mevacor, Pravachol and Lescol.

Information on statin drugs and reported side effects.

Lithium to Treat ALS/MND?

Lithium could accelerate the removal mechanisms of protein and altered mitochondria and promote the genesis of new mitochondria. The drug used in a small pre trial group (lithium carbonate) costs very little. It was combined with Rilutek/Riluzole in a small n = 16 test group but complete remission was achieved by some subjects. Those in a control group taking Rilutek/Riluzole alone did not improve.

ALS/MND Information Website

There is some interesting information on using lithium to treat ALS/MND at http://www.alsforums.com/forum/showthread.php?s=34dde98a9381a0cecfa4f81bb314b888&t=4070

and http://www.als.net/forum/topic.asp?TOPIC_ID=2080&whichpage=1