Through Mine Own Eyes

Every few months there will on one group or another be the posting like this one "Effects of Omega-3 Fatty Acids on Cognitive Function with Aging, Dementia, and Neurological Diseases." It was published in Feb '05 by the US governmental Agency for Healthcare Research and Quality (agrq.gov). For the study, the agency looked in detail at 12 published studies on omega-3 fatty acids. Here's what they found: "Maintaining cognitive function in normal aging. Only one study that met inclusion criteria assessed the role of omega-3 FA in maintaining cognitive function. Fish consumption was only weakly associated with a reduced risk of cognitive impairment and had no association with cognitive decline; omega-3 FA consumption was not associated with either outcome." Now what is really important here is not just the name of some substance which seems to do some good in some conditions similar but not the same as PSP, MSA or one of the other alphabet soups, but what matters is why this works. So I will tell you what has been left out. Do with that information as you please. The omega-3 fatty acids affect the red blood cells by making them more flexible and thus allowing the blood otherwise having difficulty travelling through small blood vessels or narrowed ones (could be due to age, disease or hereditary small vessels) being able to slip through easily, thus bringing blood and nutrients where beforehand this was impossible. Without the proper nutrients tissues and nerves were left to die eventually. It is so effective to restore blood flow in this manner that it can even stop nerves and cells dying and with refreshed tissues even rewire the brain's abilities once thought lost. Now the problem here is one of logistics if you like. The omega-3 fatty acids needed to accomplish this effectively would mean taking scads of the stuff by 1. eating lots and lots and lots of fish all day long as if you were a whale at sea world, 2. taking supplements, also in large and expensive amounts (the amounts used in the research I have seen would cost about $100. a month minimum, and the pills are large and impossible for me to swallow, and hard on the stomach too) or 3. taking a pharmaceutical version called Pentoxyphylline developed in the 70s to mimic the effects of omega-3 fatty acids (yes they have known it for that long) which delivers the appropriate amount by taking two tablets a day at about 1/3 the cost. Problems getting enough through big numbers of pills or quantities of fish are even more problematic in patients who have difficulty swallowing or are using a feeding tube. Now you have to wonder why we are not offered this treatment as soon as we are diagnosed. You got me, perhaps it makes more money for the system or saves them more money if they don't? More likely doctors don't know that any of this exists and /or would help. When was the last time you asked your doctor about a research paper you had read mentioning PSP or MSA and they knew which one you were talking about? The little girl doctor the other day looked at me quite blankly when I mentioned Multiple system Atrophy (goodness knows I have learned not to say Shy-Drager because that they have certainly not heard of). I still have a lecture tape from our local medical school where the neurologist lecturer was asked about Shy-Drager and he chuckled saying it was a waste of time as they were unlikely to come across it in their practice. I have the tape because my sister attended the lecture and she was the one asking the question (for my benefit). So to begin with they likely know little about what ails us. When they look it up on one of the likely sites (Vanderbilt for instance) it will tell them that there is no cure and no treatment and the expectation is this and that kind of deterioration. Well, that is not true then is it? There is a whole lot we could do, if we were told what they were and if we were encouraged to do something other that get your affairs in order and enjoy the little time we have left before things really get terribly, terribly bad. That's what I was told, and that's something I hear/read over and over again. Why should that be? Patients with Parkinsons, a very similar disease model is not given that bleak a prognosis and there are treatments and therapies available to try. A little research can turn up a lot. Studies done on nuns over thirty years (thanks to their selfless donation of brain tissue on death) show how nuns with the most advanced cases of Alzheimer's disease had frequently the fewest symptoms, but their lifestyle was different from their sisters who had the least AD with many more pronounced symptoms. Why? The nuns showing the least symptoms had the most interests in reading and learning and playing socialised games, and those are all therapies available to us as well. Brains cells are brain cells, they are plastic and can rewire, you damage one bit and with a little urging can rewire it to relearn using a different set of brain cells. We have known this since the early 1970s, it is in one of the papers I read my first year in university (1974). I still have the text. There was no difference in whether the brain cells were lost to disease or trauma, but it did, in all cases require the use of occupational therapy - in other words, keep learning to do something you thought you could no longer do. It is just as possible to regain abilities lost to us as someone with brain damage due to stroke or misadventure. People wake up from comas after years, the ability to become conscious is lost but regained, the brain is programmed to recover if we do not let ourselves be overwhelmed by misinformation, misdiagnosis, mistreatment, ignorance or in some cases depression and the feeling we have no control over our lives any more. I do not ant to overwhelm with my seeming ranting, but I think it is important. I also do not want to seem like a ranting disciple of some cult-like therapy plan and possibly even MLM. Goodness no. I do not come by any of this other than researching it, talking to experts in the field and applying it to myself (hence the lab rat's desk). for those who do not know, my symptoms became profound enough to make me unemployable in 1998 - after having already changed professions twice to accommodate declining health. In 2000 I was first diagnosed with Shy--Drager Syndrome or MSA-A. Of course it could always be something else as diagnosis is not certain without an autopsy, and the world can wait a right long time for that one. The diagnosis came after many years of having both head (and more humiliatingly) and mind thoroughly examined, and all known possibilities one by one excluded. The diagnosis of SDS was confirmed (in as much as possible) in 2002 at the neuro genetics clinic at UBC by an entire research team. I was most unhappy with being told to get ready to die and sorry but we can't do a thing for you. Not acceptable, not in the least. I had my own theories, and the old chicken or the egg came into play. I have always had episodes where my blood is thick as molasses and the giving/taking of blood was hampered by it. A donation of a pint would take about an hour (I learned the phrase "slow as molasses in January" from a Red Cross volunteer). My blood vessels are small (first noted by my talent manager who got me jobs modelling jewellery, and tiny blood vessels are what you need for that. It follows that pumping thick blood like oil through a system designed for the consistency of water would be a problem, especially for the heart and the extremities. I had my first heart attack in 1992 at age 38, I had arrhythmia diagnosed some years earlier. I had lost of numbness in my feet, face and hands, the name it was given was Raynauds, the postural hypotension (a hallmark of SDS) was noted as well. No one thought it might somehow all be related. The inner ear also depends on blood going through some minute blood vessels, when this does not happen you develop vertigo (you fall over but don't know why), I was now also diagnosed with Meniere's by 1993, and IBS, and occasionally polycythemia. I was told I had too much iron in my blood, but the next test would not show it. SDS as some of the other alphabet soups have autonomic disturbances when those are the most affected brain cells, and since this is not a voluntary type of movement have the rotten problem of not being able to rewire (so far as we know). Our brain regulates functions which unless they are suddenly going haywire (like blood volume) you would never think of. Well they all go wrong at one time or another in my case, and probably true for most labelled with one of these neurosies. The ones affecting blood flow (changes in blood volume, hydration, blood pressure, heart rate) have the nasty habit of damaging other body parts when they malfunction. Lots of this is in literature on sickle cell anemia and diabetes, the manufacturer of one standing wheelchair has a whole list of the health problems resulting from insufficient bloodflow from being seated too much - something even occasional standing can do much to alleviate. Cells starve when they do not get blood supplied them, not just brain cells, but peripheral nerve cells, cells in the vocal chords, lung cells, heart cells, the inner ear. Little by little the damage ravished through one's body, and no matter how healthy you make your diet, and no matter if you exercise or not, it will make no difference if the blood cannot get around because your blood flow sucks. I am reminded of this old Greek saying: "Everywhere water and not a drop to drink" In diabetes we all know limbs can be lost, bed sores fester, sensation is less accurate or absent, all because blood flow is notoriously poor in diabetics. Pentoxyphylline as well as omega-3 fatty acids have been used therapeutically in diabetes for decades with considerable success and no ill effects. Yet, doctors do not use the approach with us. WHY? In 2002 unhappy with all the negativity on another group when pressing for information on alternatives (seems they had adopted the policy of just darn well learn how to accept it and die already), I decided no one would offer solutions I'd have to find them. My dad was a research chemist, his favourite solution to everything "the answer is always simple, always". so while the world has gone quite mad looking for the most convoluted fixes for problems that are most probably simple to begin with, I started to look to simplify. No matter how I worked the disease model it came back to poor bloodflow, that, it seemed to me was the reason people with Parkinsons lived so much longer than SDS, MSA or PSP, their blood flow was not affected until much, much later in the progression of the disease. Thanks to a slightly paranoid friend I found an article on nerve gas induced mitochondrial disease, and it was there that I found a mention of a researcher into hemodynamics (blood flow) and omega-3 fatty acids.. Dr. Simpson was and is a dear man (aged in his mid-eighties by now) always available to clarify things for me, any time I had a question he would answer it for me clearly in terms I could understand and more importantly that I could use. I won't detail the relationship of exactly what he said but if you are interested you can find it on my website: www.aletta.org/special.shtml by the end of next week I should have some updates to post there as well. He had already done studies using omega-3 fatty acids on persons with MS and we found research done in China on people with MSA all with positive results. currently the local neuro genetics clinic is doing more research into Huntingtons and omega-3 fatty acids, studies into this a few years ago already showed positive results (slowing down of the disease). So in 2003, once I found a doctor willing to try something not in the textbook for SDS I was started on Pentoxyphylline 400mg 2 x a day (starting originally on 400 once a day for several weeks). I was told ahead of time not to expect to notice anything for a few weeks maybe as long as six months. Within those six months there were a lot of changes. My speech improved dramatically, my coordination and sensory losses in my hands and feet reversed to about 60% and are still holding and the steady downward deterioration I was having slowed to minimal. I have had no hospitalisations since that time, and about a year after starting my incontinence became rare. There are unchanged symptoms, the fatigue, temperature regulation, insomnia among others. It is possible they were damaged beyond repair by then. I wish I had known sooner. Frankly between knowing just how much the brain can rewire, and taking something to make my uneven blood supply continue to supply even the small vessels many things are possible. These are not toxic medications and they are relatively cheap fixes. Certainly it would be more inconvenient and expensive to have a condition requiring lots of surgeries and gadgets to stay alive. If what I have to look forward thanks to this a near normal life span with only a little more degeneration from where I find myself now, I think I can handle it. Can't for the life of me understand why this is not encouraged by doctors, nurses or therapists, are they all just making a killing of putting us in very expensive wheelchairs and hospital beds? Is research such a cash cow that no one will have that stop even if it means having patients remain as ill as possible to use as a "photo-op", it is always the saddest looking diseases that get the most money for research. Or is it as simple as the comment made by the lecturer "you will probably not see it in practice" so why bother? Just know that there are choices you can make, they are not complicated, keep your blood flowing, and keep yourself as healthy as you can, and all the things you think are lost, work at finding new ways to do them, relearn and use it or lose it with a vengeance. I will post the nun's studies if anyone is interested, I think they are on my site as well, you can use the site search and type in nuns and Alzheimer's's, the study was done in Rochester MN. I hope this helps even one other person, but just to make clear, I am not selling anything, nor do I profess to have found a cure-all. That said, I am convinced had I not done the interview with Dr. Simpson and found Pentoxyphylline, I would have been dead already. There was one thing when I started improving I was not prepared for, when the numbness lifted from my hands, face and feet I remembered that pain had gone away when the numbness set in, and I've still not gone from pain to no-pain, but I can take medication for the pain and it is worth it as I can now type again, knit again, walk better and even brush my own teeth without doing myself grievous harm.

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