Through Mine Own Eyes

I've been on this road of neural death with diagnosis attached for about eight years. Granted a few years beyond the typical prognosis, and I should be happy about that, but it can be a mighty grim path to travel. Of late, it has not been lost on me that I make this journey solo, without a "significant other", "life partner" etc.

In this society that is a great disadvantage. Add to that some other disadvantages such as being and immigrant with no well established extended family. There is no pension of nest egg built before becoming unemployable, I was in my mid forties the nest was just emptying out and I was embarking on those years one typically uses to build that security for later. Along with my unemployment went the long term disability, pensions etc. Although dutifully paid somehow it was not there when I needed it. Had doctors been a little more willing to attach a diagnosis I might have had some eligibility, but it took them too many years. The only other sources for services are faith based charities and I am not a card carrying member of a parish or church, nor should I have to be to be cared for when I need it. Yet the government underwrites the faith based charities where you sing for your supper, including those where first you stand in line along the street for a few hours for your tray. There is lots of food but few are allowed to hand it out, charity is heavily regulated.

The safety net insists you use up all savings and holdings before you have the eligibility to be on "welfare" and unless you are first on welfare, disability applications are not taken. I was unemployed for several years before my application was accepted and two appeals before it finally went through and I was destitute. From that point in life there are few ways to recover your standard of living.

On my own I could not afford to rent anything other than a room, an "SRO", which means no security, no privacy and most of them are very scary places with no accessibility for persons with wheelchairs and other needs,. My son, who is also disabled shares and small one bedroom apartment with me, he has the bedroom, I sleep in the living room, this we can just afford. This way we both live a marginal but private, secure and dignified life. However we are tied by need to each other, if either of us were to leave the other would be unable to afford the apartment, it is a pretty scary world if you are disabled and single.

As world finances are in turmoil you can't help but be fearful that the first cuts will be made to services, not corporate bailouts. Anything less than what we have now will put us on the street. You wouldn't do it to a dog. Horrible choices - if you can call them choices are always put before you, accept and apartment but lose the dog and kick your disabled kid to the curb. I was shocked they would even consider that a choice.



What I have learned is that what one social worker said to me many years ago "you're still attractive why not find a man and get married before you lose your looks". I was disgusted, basically I should consider my only means of certain survival is to find a man, any man, or woman, and live out of his/her pocket. Take some abuse if need to, love isn't necessary, just would be nice if they liked us and treated us kindly. Wow, we've come a long way as women haven't we? Not far from the poorhouses of the Dickens's novels I read in my youth. As it is my survival depends on my son sharing the apartment. I am at all times at the mercy of someone else. The notion that there is a safety net is bogus. I am not safe, far from it.

Horrifyingly I continue to deteriorate and I don't know how long I can manage, continue like this. As it is now all my time is spent either sitting in a chair trying to keep busy with the few abilities I have left, or hygiene and housekeeping to very basic level. No more cooking of full meals, it is heat and eat now. I have simplified my wardrobe so I can quickly wash in a sink and let dry fold and put in a drawer - no ironing, no complicated fasteners. My one great joy is taking out the dog once a day.

Everyday I agonize that there is noway I can still even hope to make some income. I have tried, but stories didn't find publishers, only a few paintings were sold, and I no longer have any energies left to do promotions. Friends are all gone, some keep in touch but at most I see a friend once in 6 months. I cannot remember my last hug, ir was about a month ago. I am human, I ache for human contact. I am often upset by my deterioration but have no one to speak with about it. No one holds my hand, no one gives me a hug.

I try to feel good that at least I am not dragging a husband into this depressing scenario, cold comfort. Again I find myself living in a world where the only way to feel safe and cared for is to be coupled up with someone who feels committed to stay, and preferably has an income and insurance as well. If there really was a safety net this would not be the case. If i had my own income I might be able to purchase the services of a live in or out companion. I think with a little help I could still do some writing, painting and if fortunate find a market for it as well and have something to leave my kids.

Where did it all go so terribly wrong? Being and immigrant is the wrong thing to be, I cannot draw on what my parents and grandparents had built up back home. My marriage went to bits and I found a very sexist world still existed. A world where doctors would speak to your spouse as though you were not even in the room, but without a spouse no useful information was imparted not were your complaints given the same weight as when expressed through the spouse. We have not come a long way as women, not at all. Not being a member of a wealthy or at least charitable church puts me with less resources to draw on.

I find it offensive I should buy into a faith for the sole purpose of a better standard of living, it is repugnant. I learned during the early years that Catholic for the most part was not considered "Christian", and if I were to mention having first been raised Buddhist, well, there were many suddenly refusing to break bread with me among my "Christian" friends. Worse still was the realization that much of these resources were funded by our tax dollars, and to me faith should not be attached to faith.

Also I found that some diseases are better than others, and mine did not fit with any of the big organised disease charities. The one small organization which finally accepted me as a member, the BC Ataxia Association, still grumbles that mine is only a "sort of" ataxia unlike the inherited versions. Even the on-line support group which was set up for the disease which I was diagnosed with found my trials of unorthodox treatments so offensive as to attack me for it until I left. I was brought to tears with all those attack emails, and on top of it many of the member of that group suffered from very different diseases than mine. I stuck with my unorthodox treatments and at least I am still alive, beyond my prognosis.

Really though, should someone struggling as hard as I am have to suffer so many indignities, often at the hands of those supposed care for me and all those in my position. There are days I feel guilty for being a single immigrant with no nest egg or portfolio, unwilling to kick dog and son to the curb and live in some roach infested SRO until the desire to live is good and dead, then with my power of attorney in the hands of a government run nursing home I will quietly be given just a little too much morphine. That is the thought that does make me cry, quite often lately.

I need only a little help and encouragement, like a potted plant needs fertiliser, sunliight and water, and so does every person finding themselves in this position because I am certainly not alone, there are persons everywhere in this predicament, we don't all have in home carers, many struggle on their own. If my hands fail utterly and cannot type, my voice falls silent, no one will type for me. People wither without human contact, you don't get many hugs in my position. Even family stays away because seeing me so different from what I once was is "too depressing". Of course their lives are busy, and visiting me is not convenient.

I can scream "but it isn't fair", and I think I would be right, but fairness does not live in this world. Women most especially were fighting wrongly for equality when instead they should have fought with all members of the human race for fairness no matter the gender, ability, race or faith. I cannot be equal when I cannot do what you can, but I should be able to tap into fair treatment as you can. Winter allows for more thoughts on the passage of time, and it raises my fear level, one hopes to end life in a better world than the one we were born into.



We should at least laugh when we can.

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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