From the Lab Rat’s Desk – January 20, 2009

Life only comes with one instruction – “live”. There is something very wrong with a world where it is considered acceptable not to follow this one instruction and cut short the most precious gift of “God” the “universe” or whatever deity you choose to accept. How can a man with ALS survive for more than 30 years and have the world hanging on his quantum theories suffering the same problems as Dr. Turner (Jan ’06 article on Dr. Turner on the BBC’s website (posted on the PSP Forum 3 years ago): http://news.bbc.co.uk/2/hi/health/4625538.stm)and others who’ve chosen to end it. Others write books while stricken, or paint paintings. Many are involved as grandparents, dog owners, cat owners, friends and find value in their own existence such as it may be. I doubt an atheist would have an easier time making peace with the decision to end life, after all an atheist has less time to live in this universe than those who believe there is “more” what ever this may be, heaven, becoming part of the universe’s intelligence, or a new soul recycling old bits of ourselves. My own opinion is that she suffered less with her neurological problems than she did with depression and the failure of those around her to help drove her right to those greedy Swiss “doctors”.

As for patients living in various forms of denial, I must commend it as a coping skill. I wake up everyday and compare myself to the day before, worse or better, and in this way I fail to notice how much I am actually losing, the increments are always small. I avoid lengthy introspection, that is depressing. If I comparted even to six months ago I could be brought to tears. Six months ago I could complete in two days what now takes me a week, and much I can no longer do at all. When it comes to my future it is the same, today and tomorrow, no long range plans. Lengthy introspections are avoided, they take me to the edge of the abyss ad that is not a good place to be.

I hold on to my dignity as much as possible. I will not be seen on bad days. Clothes no longer have complex fasteners nor are they tight fitting, and the heels on my shoes are lower and broad, but I look nice, and I try to sparkle around people because it makes all our lives happier. Being around people is valuable only when they are not taking you by the hand and walking you through “what if” thoughts or being frightfully sad for you – the only way to react to that is to become sad, maudlin, angry and guilt ridden – all at once. I am a very direct person, it helps, I tell everyone what I need and want and those who can deal with it are in my life, and those who cannot are not. Not surprisingly my family was relieved to be told what I needed and what I wanted as far as being sick went. I arranged for the brain donation papers, I wrote what I wanted down on paper and signed and witnessed. I wrote some letters to people who I felt would need that letter to hang on to if I were suddenly gone and things were left unsaid. Since then those letters are largely not needed as I don’t think anything remains unsaid. What a weight that is lifted off the sick shoulders.

On spectacularly bad days I wonder am I worse or have I been here before. Happily I journal about the illness (as if it had it’s own life), and I can pick up a volume (ten years of journaling since being diagnosed) and answer how many other times I have had such a day, or not. I also have set of photos taken those years taken without makeup, and this too shows low and high points, a progress gallery of sorts. The journals and photos allow me to observe more objectively and this does not give way to panic, I don’t need to personalise that if I do not want to.

We die of complications, and if our general health is spectacular chances are we can live a long, long time, and the decline will be less rapid. Beyond that just wanting to live – attitude- is paramount. I am in love with life, all of it, I look forward to every spring,delight in every animal I can see or interact with, I love the sound of children laughing, a cat purring, beautiful music. I like to laugh, I like to learn, I like television mysteries. I don’t concern myself with an afterlife, there either is or isn’t, if there is I hope to be considered deserving enough. I could content myself with just the life I have. Perhaps because my life has been filled with pain and loss not of my own making I pick and choose what to react to, often the only choice I had.have is “do I want to be happy today or not?”

I could make a very long list of what this illness has cost me, every one of us could, but I have also gained, I take nothing for granted, I know today could be the last. That said I’ve outlived some of my young friends all of whom died before turning 40. I have seen their last days of trying to draw breath. I cannot dwell on it, the pain of dying in some cases is awful and in others not, and nothing can prepare you for either so cast aside those notions.

Dr. Hawking continues to find joy in life, and wouldn’t it be frightful if you took yourself to Switzerland to terminate; and the day after, the pharmaceutical giants announce a breakthrough to regenerate sick brains.

Meanwhile I try to stay with my yoga every day, even if it is very little, I take care of myself as much as possible, and I find reason to be happy. I tried the lithium, it didn’t work , feeling a little desperate for success I asked the doctor to maybe let me try again, but he said no, it made no difference and it won’t next time either. The definition of insanity, doing the same thing and expecting a different outcome.

Parkinson drugs work on Parkinsons, and my current doctor did not push me to try. Other doctors wouldn’t even treat me unless I tried them, imagine, some doctors also turned me down because my condition was to complex. It never occurred to me a doctor could turn down treating a patient, what a revelation.

Life was worse when no doctor would treat the symptoms, somehow there not being any treatment translated to doing nothing at all, finally the current doctor was willing to treat symptoms to make life bearable. Buscopan stopped the drooling and the extreme vertigo and my hearing became better, narcotics for pain, neurontin for peripheral pain (the kind narcotics don’t help), burning sensations and to a lesser degree the arrythmia, duvoid for my bladder dysfunction (retention) and trentall to make my blood flow better. Other symptoms are managed by natural means (yoga, diet, lifestyle, laughter,friendships)

The greatest casualty of my illness was having any social life or productivity with rewards (an income), those I have a hard time with. Being connected on the computer is invaluable, and every time someone tells me what I have written has helped it makes up for all the paychecks I have missed out on. I can travel via the computer and the television, and as I said I don’t think it helps to dwell on losses. Being sick has changed nothing as far as who I am, I never felt defined by how society views me or by what toys I own or what mountains I’ve climbed, so being a potted plant is just fine, as long as I can be well tended. Even an atheist would prefer living to the alternative, death is not a rational choice.

aletta

From the Lab Rat’s Desk – October 25, 2008

I had an EMG test last week, lost of nerves keeping me in a state of such fatigue I couldn’t write. The neurologist was just lovely. Obviously she had some experience with PD and PD+. Once in my little backless gown in a white room and feeling very, very small, I had to face what I had become. I have tremours which normally I hide in all sorts of creative ways, but there I couldn’t I have nerve damage, peripheral and sensory, hence my numb feet. I will be having and MRI, but she feels it is all part of the same thing and there is now a cellular loss which can only be cerebellar.

I am still trying to recover from that blow. I had managed to avoid specialists and their opinions for the last few years and concentrated only on living with my symptoms, padded myself royally in denial. I don’t like being small in a white hospital room with tests which destroy deniability.

I am working my way back to before, if I can. Trying to put faith back in lithium, yoga, tai chi and laughter. I am left devastated by the news and without any offers of making it all better, because, as yet it does not exist. I want to be able to read how everyone deals with it, where they are, what they try or would like to try. I don’t care if it is approved or not for what we have, we are for the most smart enough to check it out and not do anything without asking our doctors first, but I want to know. The is is where I heard about the lithium, cinnamon, glutathione. Often something is done in Europe or New Zealand years before it comes here and vise versa. So we should share, without limits. Not having limits has worked well so far, unlike at least one group I know of what always set limits.

How we deal with MSA/SDS/SCA/CGBD/OPCA or any of the other alphabet soup disorders, is all very individual. We don’t all live near major medical centres with neurologists well versed in these kinds of illnesses. Some, as myself, live in places where there are inadequate available testing and neurologists who’ve absolutely no experience with any of the neurosies. Where do we turn but the Internet? The Internet is where my doctors and I found all of the treatments I am currently using. The textbook approach would have been to put me on PD meds until it was a dismal failure and then watch as I slowly die. I might have done exactly that had I not found a few people with similar problems who found a solution to a symptom, or my doctor read a study and wondered if I’d be willing to try. So over the last ten years this illness of mine has been managed to the point where I am still alive and still feel it is a life worth living.

It does sometimes really infuriate me when people suggest I try alternative therapies, I think most of us would have tried that first, before we were even diagnosed. I went through years of elimination diets, detoxifying diets. A large floating fungus (Kampuchea mushroom) living in dark tea on my fridge, it’s disgusting sludge was my morning beverage before going to work. I did not become ill on the day I was diagnosed, it happened, long, long before then. I lived on seaweed, spyrocella, used thyroid extract, took massive amounts of vitamin C. Other than some very debilitating symptoms (poor circulation, arrhythmia, choking, inability to sweat, body temperature problems, sleep disturbance and the most horrifying degree of exhaustion you can imagine) and every day was liking waking up with a hangover. Despite that I was and am still very, very healthy. There are a lot of ways I would rather have used the money that was spent on those alternative therapies. We might have had a holiday as a family, driven a new car, maybe even bought a house. Instead we did what we had to keep me on my feet and earning a living.

So a rage boils up inside me when someone suggests I try alternative therapies. I was raised on them. MY grandmother was the local medicine woman and abortionist in Flanders, something passed down in the maternal line, they did the laundry of rich people and brought some kind of medicine to the poor. They also read cards. I have a cupboard full of herbal teas and I know what they are for. I also know how much before they are toxic. My parents fanatically brought me up vegan. I broke a lot of bones as a kid, not surprisingly once I stopped being vegan at age 17 the bones stopped breaking. While I danced as a ballerina we were also very conscious of what and how much we ate, obviously I got some exercise.

I was still epileptic in my teens, had five miscarriages. My thyroid went berserk in my early twenties and I had the most awful migraines my whole life. I didn’t take any sick days, and I was the major breadwinner in our family. After all that struggle when I hit the proverbial brick wall and could not keep going I was told for the next few years that it was all in my head. More lectures on less fat more anti-oxidants and exercise, as if the doctors never even read my file.

I was diagnosed one after the other with according to them, unrelated problems. Migraines, Reinaud’s, carpal tunnel, peripheral neuropathy, chronic constipation, probably Crone’s, MS, Chronic Fatigue, and another round of “typical, your husband left you, you’re menopausal and depressed”.

When one doctor brought up Shy Drager, the next neurologist said that wasn’t possible since it only happens to Jewish males in their sixties – makes you wonder what they teach them in medical school. There was a lot of guessing and not so much testing, it felt as if they were humouring me. When I was fired for being drunk my family physician finally started taking me seriously.

Of course once I had a fairly definite diagnosis, there was nothing available to treat me with. I was/am lucky to have physicians not opposed to treating my symptoms, putting my quality of life ahead of their textbooks.