MULTIPLE SCLEROSIS CARER

Grandparents day

2010-07-24T07:45:00Z

They had "Grandparents Day" at my grandson's school. Perhaps you think I am overdoing the Doting Nana thing, when I tell you that I farmed out the cat and the dog, said goodbye to Don, and drove the 400 km (250 miles) to where they live, so I could attend. Stayed two nights, then back home again.

Too much, you say, just so that a five-year-old won't feel left out?

But consider this:

Of the four grandparents, I am the only one available (two live overseas, Don is in the nursing home)
That trip was nothing, compared to the people I know who flew to Sydney from New Zealand for Grandparents Day
In a school of 250 students, there were about 170 grandparents, so those children who didn't have anybody there, really would have felt left out
I enjoyed it all very much.

Gavin's class were doing a spooky act (song from the Addams Family, in fact) so he made his own ghost mask for the occasion. Then we had to make sock puppets with our grandkids, and it was all a lot of fun.

They Call Australia Home

2010-07-22T22:56:00Z

I had a phone call from Huong and Han, saying they wanted to come and visit. We hadn't seen them for years. They drove up from Sydney for lunch, and Don came home for the occasion, and we sat out on the deck and reminisced.

They came to Australia years ago as refugees from Vietnam, and we were part of a Refugee Support Group in a country town, so we had a lot to do with them as they tried to settle in to their new country. There were a younger brother and sister we couldn't quite fit into the equation since we didn't speak Vietnamese and none of them spoke English and so it was some months before we sorted out the relationships. Huong, the young man, would look anxiously but blankly at us and just nod in response to any statement. His wife Han looked at the ground and did not try to communicate. He had seen his father killed before his eyes, and he had swum the Mekong River to escape, in fear for his life. They had no English, and no luggage.

Once they got a little established, they both worked harder than anybody else I have ever met. She did sewing as an outworker, making garments for up to 16 hours a day, he got a truck drivers licence and did long hours driving, then worked at the markets early in the mornings when he was home.

They now own their own Vietnamese restaurant in Parramatta, own their own home which has its own pool, they have three children who are in High School or University, and her sister is a pharmacist and married to another (Vietnamese) pharmacist and has two children and owns two pharmacies.

They remember everything that happened back then. It was the Queens Birthday long weekend when they came to visit, and Han told me that twenty-five years ago, it was also the Queens Birthday weekend when they visited us for lunch one day and that I gave them a salad with slices of leg ham, and she had never seen or heard of it before and never had anything so delicious.

This time, they brought a duck from their restaurant, and with no language barrier they talked non-stop.

No Car

2010-07-11T13:05:00Z

They told me at the nursing home that Don was terribly tired, as he'd had a bad night with very little sleep at all. Apparently he had been restless and waking up at frequent intervals, quite agitated and wanting to get out of bed "to get to the funeral".

So I said to him, You had a bad night?

Yes, he said, bad dreams. About a funeral.

He was half asleep and starting to drift off, but when I asked whose funeral it was in the dream, he woke up and seemed to remember it all clearly. He explained it didn't matter whose funeral it was, in fact he didn't even know. But he was the minister and he had to take the funeral, and he was trying to get out of bed so he could go and do it.

Then he looked at me, and said, "You didn't come. I needed you to come because I didn't have a car and I couldn't get there. You had the car and I was waiting for you but you didn't come, and that's why I got so upset in the dream -- I had no transport and was depending on you." Then he added that he knew full well that it was a dream, but it seemed very real.

Of course it seemed real. Because, it IS real. I have the car; he has no car. I decide if and when he goes out; he decides pretty much nothing.

I'd be having bad dreams too.

Ingrid Poulson

2010-06-29T22:36:00Z

Somebody from Compassionate Friends (the group of bereaved parents who meet to listen to each other's stories and support each other) lent me the book "Rise" by Ingrid Poulson. I am sure you have heard of her, even if you have forgotten the name. Ingrid Poulson suffered domestic abuse for years, finally left her husband and lived with her two children in a house next door to her own parents on the NSW South Coast. Her estranged husband came to the house one night and violently abused them all,and after he left she called the police to take out an AVO against him. The police came, and asked her to accompany them to the police station to make a formal statement. So she went next door and asked her father to look after the children while she went to the police station. In their absence the estranged husband returned, and they came back to the house to find her father and her two young children murdered.

After the first months of shock and grief, Ingrid came to the decision that she would not be destroyed by this, that she would "honour" her children by going on to lead a fulfilled and happy life. She has written a book "Rise", ie she would rise above it, but also the letters stand for the steps necessary for the transformation from grief to fulfilment. They are:

Resolve - you have to actually resolve, or make the decision, that you will not be brought down by your grief, that you will start to live again
Identity - your children are not your identity; find the person that you are, independent of your child
Support - find people and groups that will be able to support you
Everyday habits - make sure you eat healthy foods, exercise daily, don't drink too much, develop leisure activities

Ingrid Poulson now runs training sessions on all of this. When I began reading her book, I found it quite inspiring. One of the most helpful things to me was the notion that you "honour" your children by getting on with life. That was already one of the motivators for me in deciding, after about a year, to get out there and start doing things again; because I know Ross was so proud of us and all the things we did. On the other hand, there is this terrible, illogical guilt that you are leaving the person behind, once you get out and start enjoying life again. So, the idea of honouring the person resonated with me, and helped me.

But I also had mixed feelings about the book, and it made me somehow uncomfortable. Some of the Compassionate Friends expressed some of it, saying things like, "It made me feel inadequate"; "I felt bad about myself for being so weak, instead of being brave like her"; "it's seven years on for me and I'm still struggling, but after five years she had published this book!" "what's wrong with me, I just can't do all that and be like her."

I guess the point is that we are all different, and should not feel weak or inadequate just because somebody else came through it all and thrived. I can only admire Ingrid Poulson, and take what lessons I can from her experience and her determination to be resilient and to "Rise".

This Day 15th June

2010-06-14T22:02:00Z

I recently read a book in which one of the characters, first thing in the morning upon rising, would pause and say, "In the name of the Father and of the Son and of the Holy Spirit I live this day." I thought, what a good way to start the day, a reminder and a commitment. So this morning, I stood at the back door and looked out at the lake, saw three ducks gliding along together with a little wake behind them, mist rising from the water. I said out loud, In the name of the Father and of the Son and of the Holy Spirit I live this day. As I watched, a kookaburra laughed, and a fish jumped.

It's a beautiful day.

It's my birthday.

It's two years today since Don and I lived together.

I know this because on my birthday in 2008, we drove to Sydney for lunch with our son and his family, to celebrate my birthday. By the time we arrived, Don had collapsed and was ambulanced to hospital. Turns out he had gone into septic shock with a lung infection, and he was in hospital for a fortnight, ,then to rehab for three weeks, but he never recovered sufficiently to come home again. It had already been touch and go as to how long we could continue, and that setback just put the lid on it all.

So, it's a poignant anniversary as well as a celebration day for me. Mind you, I won't have time to do much celebrating because I've been dragooned into helping with the catering for a church function this evening (Presbytery is meeting at our church tonight, and we provide the meal for them beforehand, a sit-down meal for 80). I am looking after the mashed potatoes, so I've purchased 10 kilos and have to peel them by 1 pm, when I'll take them to the church for further instructions and also for the setting up.

Better hold the champagne and cake!

Staying In

2010-06-11T02:17:00Z

I seem to have the dog's disease, all sniffles and sore throat and feeling sorry for myself, so I am staying home and not going to the nursing home. Tried to phone Don to tell him I won't be in today, but his mobile either needs charging or has been switched off, so eventually I rang Sister instead. Told her apologetically that I wasn't really well enough, and for her to tell Don that I'll try to be there tomorrow.

Sister was very direct and to the point. If I've got the flu, or even just the common cold, they do not want to see me there at all! At least not today and preferably not tomorrow either. "Not even wearing a mask?" I asked. Too risky with the fragile state of these people's health, I was told. Masks aren't all that effective.

So I feel as if I've been granted a holiday. Slobbing about in my tracksuit and ugg boots, I feel quite decadent, and I realise what a chore it is to have to get dressed up enough to go visiting, every single day. And having to go out in the car, every single day. And never just staying quietly at home having a leisurely morning and sitting out on the deck having lunch in the sunshine.

I probably would not have got up at all, if I'd had somebody this morning to go and fetch in the paper and bring me a cup of tea. But then, I know full well that if there was somebody in the house who would do that, then I would want to be up and enjoying the company, so that doesn't really work.

I think just the one day might do it, though. I'm really not up to doing housework, and there's absolute rubbish on daytime TV, so I've just spent the morning pottering about, playing piano, fiddling around at the computer, having a read. Now I'm about to get a hot lemon drink and go to bed with a book for a couple of hours.

Now, that is decadence!

Don's New Room

2010-05-24T11:50:00Z

When Don first went into the nursing home in August 2008, he was in a shared room. It turned out to be something of a "death" room because in a little over three months, he had no fewer than three different room companions, each of whom died shortly after admission. That's fairly unusual in the nursing home, where an average stay is several years rather than months - or, in these cases, weeks.

The Sister in Charge made up her mind that Don needed his own room. He was younger than almost all the other residents, secondly he had his wits about him and found no companionship with the comatose room-mates he had had so far, and thirdly he was visited daily by me or by others, and of course visiting is much better if you have the room to yourself. So when a single room came up, she moved Don into it.

It was a nice room, looked out onto the courtyard:

It was also the first room you come into from the foyer, so I had the advantage of seeing people come through the front doors, would give them a wave if I knew them, invite friends into our room.

But for various reasons (too complicated to explain) they suddenly needed this room for somebody else, and offered Don a different room. It's further down the corridor so we don't see who comes in but apart from that it's a larger and nicer room, and Don prefers it. It looks out into the grounds:

Don also likes the blue colour, as opposed to the cream of his previous room. And (I know this sounds stupid) it is Room 11, which is my favourite number - Don's birthday is 11th, Ross's birthday is 11th, it is the street number of one of the best manses we ever lived in (Mudgee). And I always liked 11 before any of that - the first prime number in two digits, the multplication table so easy to learn because all the multiples up to 100 are so symmetrical, and it is just a great number.

I can't wave to friends as they walk in the front door any more, but it's a good room and Don is happy with it.

An Anniversary

2010-05-19T11:55:00Z

Carolyn Salter's son Ben died in a plane crash at the age of 21. She has written a book of poems, and one is entitled "Two Years". It starts,

"Can it be? Is it true? Two years have gone since we lost you.
Two years, when we couldn't live for two hours.
Two winters, two summers, two seasons of flowers.
Two years, and the pain and the hurt are still there,
and always will be. Yet we share
the joy of having loved you ..."

Two years since Ross left us. Two years, when yes, we couldn't live for two hours. And yet, two winters, two summers, here we are, still not quite believing that he has gone.

I said to Don, what do you want to do on Wednesday, 19th May, it's the anniversary. Do you want to come home, and we'll look through photos, and we'll play some music, and remember. Or do you want to go out for lunch somewhere and make it something special? or what. He just said, Don't do anything, I just want you to come to the nursing home and sit with me.

So that is what I did.

Only, tonight, I tried to ring some good friends but got the engaged signal time after time, so instead I just put on some tracks of music -- Geoffrey Gurrimal's lament, Leonard Cohen's Alexandra Leaving - and lit some candles and sat on the deck and looked at the lake in the moonlight. Ross would have thought that was a good way to spend a sad evening, I know; he was a great one for just sitting silently and drinking it all in.

Filling in Time

2010-05-09T08:03:00Z

Last week I mentioned to a friend that I have become serious about improving my piano playing. Last July, I resolved to spend 20-30 minutes each day in practising, just as I used to when I was first learning. I decided to work my way through the Third Grade lesson book by the end of the year, and did so. Now I am halfway through the Fourth Grade book, plus working through a second book of classical pieces.

My friend gave me a puzzled look and said, "Why?"

I was quite taken aback, and didn't know how to answer her. I had to stop and ask myself the same question: Why am I doing this? Well, it is challenging and often difficult, but I am enjoying it; also, the discipline of practice is good for me; also, there is a lot of satisfaction in mastering the pieces; and finally, it is better - much better - than watching daytime TV.

But I kept mulling over her question and her obvious bewilderment, and I've decided you could ask the same question about anything we take on. Why do it? Come to that, why do anything? And sometimes I think the real answer is, that we are just filling in time until we die.

But perhaps there are more futile ways to "fill in time", I decided, when I heard that May is Zombie Awareness Month, and we are urged to "wear a grey ribbon to signify the undead shadows that lurk behind our modern light of day". Later that same day I learned that it was "International No-Diet Day", when we are supposed to proclaim the uselessness of diets, and go on a binge.

Listen, if we are just filling in time, I think I'll continue to practise the piano, play tennis on Fridays, go to church every Sunday, and take the dog for a walk by the lake every day.

It beats wearing a grey ribbon and bingeing out!

Another Decade for Don

2010-05-05T09:23:00Z

We had a good day for Don's 70th, with about 16 family and friends there for the occasion. Don had a couple of funny turns the previous week, and at one stage it seemed we would have to cancel the whole thing, thinking he would be hospitalised. But the fainting spells turned out to be nothing serious such as preliminary to a stroke (the main concern) but most probably an inner ear infection.

I couldn't get our big outdoor umbrella to stay up -- maybe a pin is missing or something -- and it was too hot and dazzling to stay outside without cover, so we all milled about inside, rather more congested and crowded than I had been planning, but everyone seemed happy.

About a month ago I was at the funeral of an old lady we've known for years, and as so often happens, the eulogy taught me so much more about our old friend, fascinating details from her life, made me regret not knowing more about her when she was alive. I thought, surely there are other times in life when we can share that sort of information about someone. So, in planning Don's birthday, I thought it was an appropriate time to mention a few details of his life that people may not be aware of.

We always do speeches, it doesn't seem a proper celebration in our family unless there is a speech of some sort. So I did a toast to Don, not a long speech, but these are some of the things I told about him:

Everyone knows Don has a Master of Arts degree (Psych major) but did you know he left school at 14, barely scraping through the Intermediate Certificate
Worked on his parents' farm for the next 7 years, hard times but an influential period that has affected him powerfully all his life, being the man of the family, seeing them through drought and then flood and then the family finally walking off the property
Deciding at 24 to enter the ministry, being told to get his degree as a first step, so did the Leaving Certificate by correspondence, holed up in his bedroom in his parents' house, sending off new lessons every day, beginning in May and matriculating in November of that year
At University in Sydney, attending a student Christian seminar one lunchtime, mingling afterwards with the other students, locked eyes for the first time with ..... me! (And yes folks, that was it! ....)

Our son talked about Don's generosity and big heartedness and the stream of lame dogs he would bring into our home, and the hitch-hikers he would squeeze into the car when we were going on trips, and way that influenced all our kids.

Don enjoyed the day greatly, and the cards are still pinned up on the board in his room. The photo shows Don, grandson Gavin who helped with blowing out the candles, and our friend Graham

Anzac Day

2010-04-26T21:16:00Z

At the nursing home they hold the Anzac Day ceremony outside if posible.

I reminded Don that this was the first Anzac Day that his mother is not alive. She always went to watch the march of course, but she also made the effort to get up and go to the dawn service, right up until she was in her nineties and into the nursing home. She lost a brother in the war, Don's Uncle Bill. He was a Rat of Tobruk, and family legend has it that during the war she woke screaming that Bill had been shot in the neck! and a few days later came the news that Bill was dead, shot in the neck.

Don and I went to Gallipoli a few years ago. It was a wonderful experience and very moving. Walking around on a quiet afternoon, looking out at the blue waters of Anzac Cove, reading the headstones and the epitaphs of those young men. Some I remember: "Goodbye cobber, I'll miss you"..... "Dear to me is the spot where my beloved son lies. My Anzac hero. Mother." Did you know that none of the fallen Anzacs were brought home for burial? People made a policy decision at the time that it would create a distinction of wealth; those who could afford to transport their loved ones home, and those who could not. So, they are all buried there. And then the Turkish leader Mustafa Kemal (whose brilliance was largely responsible for our defeat at Gallipoli) put up a wonderful plaque saying something like, Mothers, grieve not for your sons who lie buried in our soil, for your sons are now our own sons, and we will care for them as for our own....

It makes me think that we are making a mistake in digging up all those bones from the battle at Fromelles and trying to identify them by DNA so that they can all be brought home and buried in Australia.

Busy Week

2010-04-07T21:23:00Z

I was starting to think I need to get out and about and do more things. Was tentatively thinking of a couple of activities I might take on, eg choir, tennis.

But this week has exploded, and I am almost back to my old life of being too busy to turn around.

Big event is that Don is turning 70, oops sorry I should apparently say "The Big Seven-Oh", this coming Sunday. So we have friends and family coming from far and wide. I am looking forward to it greatly, partly for the occasion but mainly to have so many friends together with us. But it has also got me out of my lazy comfort zone for the week: I actually washed windows (Monday), weeded and cleaned the pavers outside, and painted the big old wagon wheel with outdoor paint so I can put it out at the front of the house (Tuesday), cleaned the spare room and Gavin's room and made beds for when the family arrives tomorrow (Wednesday), shopped for enough ingredients to feed an army for a month, and started making desserts and soup, for the party and for visiting family.

So when the bowlers rang in desperation to say they were short of numbers for their bowls team comp on Tuesday, and again tomorrow Friday, I was more than reluctant. But they were very pressing -- well, they had to be desperate indeed to phone a newbie like me -- and besides, I have always found it hard to say no. And, I enjoy bowls and we did have a good game on Tuesday.

And we seem to have found ourselves in yet another parish where the congregation is crucifying their minister, so when I was asked to take on the role of one of the leading lights who has left, I felt the only choice I had was to agree. Besides, I have always found it hard to say no. And to be honest, I will be quite glad to be more involved, after all this time. So I am meeting somebody about that later today.

And I had to go to Toronto Private Hospital for an ultrasound yesterday afternoon. (Nothing to panic about.)

And yesterday morning I was asked to a friend's house who was having some people round for morning tea. Said I might not be able to go as I was very busy -- but, did I mention I find it hard to say no? And it was a really nice morning.

And today they don't have an organist for the weekly church service at Bayside, so yesterday I typed the words for someone to photocopy and last night I practised.

So I've had plenty to talk to Don about when I have been sitting with him this week. He takes a great interest in all my activities and who I've been meeting, and so on. I'll try to post some photos of Don's party after the weekend. And then, next week, I will be minding my little grandson for a week of the school holidays. But after that, I might make some inquiries about tennis.

After all, there's nothing to watch on TV.....

Benedictions

2010-03-29T07:45:00Z

They have a short church service at the nursing home every Thursday, with different Protestant denominations taking it in turn. If there is a fifth Thursday in the month, nothing is planned. Not long after Don became a resident at the nursing home I was asked if I would run a hymn singalong for them on the fifth Thursday - I'd play the organ too, and intersperse the hymns with a Bible reading, perhaps a little story with a message. Don said to me, "What would you like me to do?" so I asked if he would just like to do the benediction at the end, and he was more than happy with that.

Only, his memory was so bad that I was not confident he could remember the benediction, so I printed it out for him, despite his protests that this was something he had done hundreds -- no, thousands -- of times and could never forget.

When the time came, he was completely stuck. He just stared at me, looking puzzled. "The Benediction," I said again, but he looked completely flummoxed, so I gave him the piece of paper. He stared at the paper, bewildered, so I whispered, "The grace..." He got annoyed. "What do you mean, the grace!" It was getting embarrassing, so I started off aloud, "The grace of our Lord Jesus Christ" - paused in case he was able to carry on from there, but then had to complete it myself.

Fast forward to his mother's funeral, when he had been on low dose naltrexone (LDN) for six months. No other changes in medication or treatment, except for the LDN.

"I'll do the benediction at the end," he announced. "There's a special benediction that I always do at funerals, and I'd like to say it for Mum."

I was nervous, and found a book with the benediction he wanted, just in case.

The time came for the benediction, and Don turned his wheelchair to face the congregation and said, "After all the stories about Mum that we've heard today, I just want to add two more memories: Trees, and rabbits. Living on the farm in the Riverina, with years being ravaged by drought, one of my abiding memories is driving round the paddocks with Mum, lopping branches off trees to provide feed for the stock. And as for rabbits, well I know more about catching rabbits, and Mum knew more about how many ways there are to cook rabbits, than anyone here can possibly imagine."

He said a little more about trees and rabbits, then paused. Then without missing a beat, without reading a single word, he said, "The benediction. O Lord, support us all the day long, until the shadows lengthen and the evening comes, and the busy world is hushed, and the fever of life is over, and our work is done. Then, in your mercy, grant us a safe lodging, and a holy rest, and peace at the last; through Jesus Christ our Lord. Amen."

I was struggling with tears myself, to hear him say all that. A healing miracle indeed.

Windy Wellington

2010-03-23T23:15:00Z

Everyone tells me Wellington is always cold, and that it is rightly nicknamed Windy Wellington. The five days I spent there visiting our son were absolutely beautiful. I had checked the weather forecast before I went, and was prepared for cold nights and cool days, but in the end I practically lived in the two T-shirts I put in at the last minute. Mind you, on a visit to the top of Mt Victoria which overlooks Wellington, I was almost blown away, and couldn't even keep my balance enough to take a photo from the top. And on the last day I did get out all my winter woollies.

With time on my hands, and Stewart having a goodly supply of DVD's, I watched more movies than I've seen in the past five years! The Blind Side, Precious, Up in the Air, Julie and Julia, The Proposal.

I phoned Don a couple of times and he was completely tranquil about my absence. In fact, I'm not sure why I rushed back after such a short stay in Wellington, could have stayed for longer and I'm sure he wouldn't have minded in the least.

Great to spend time with our lovely son. (Yes, it turned cold that day, and he couldn't find his other sock ...)

When They Clap The Pilot

2010-03-14T02:16:00Z

Just a small problem with the hydraulics, announced the pilot. So we won't be landing in Wellington after all, we will go to Auckland instead. No worries. And refreshments are coming around shortly.

The passengers were amazing. Everybody just kept reading, watching their movie, dozing. No agitated discussions, and nobody button-holed the staff with anxious inquiries. Not even when the pilot later explained that due to the problem with the hydraulics it was not possible to actually steer the plane, and so when we landed they would have to tow us in. Luckily I was not aware until later that without hydraulics you can't actually land, either.

I am in New Zealand visiting our son in Wellington, a short break away of just six days.

They cheerfully announced that accommodation had been arranged in Auckland for all of us, arriving approximately 11.30 pm, and we were all booked on a flight to Wellington the next morning. And not to worry you folks, but just as a precaution there will be fire engines and ambulances available, so don't be alarmed when you see emergency vehicles on the tarmac.

Still nobody reacted. You'd think they had just reminded us not to leave any luggage behind and that it was currently 15 degrees in Auckland. All calm, everybody quiet.

We landed. A bit bumpy, but nothing out of the ordinary.

As the plane drew to a stop, there was a sudden, spontaneous outburst of prolonged applause. Nobody cheered, or whistled, or called out. But they clapped and clapped and clapped. And clapped. Loud and long, and hearfelt.

When they clap the pilot, you know that deep down, we were actually a little bit scared .....

Aspartame and MS

2010-03-07T04:47:00Z

It's easy to get sucked in by internet articles that have solutions for MS. The medical world not only has no idea how to cure MS, but it does not even understand what causes MS in the first place. Or why there is a higher incidence in some places that others, eg Scotland has the highest incidence of multiple sclerosis in the world, and nobody knows why. We know so little about MS at all. So, the field is wide open for theories and nutters. You will read that it's all to do with how much water you drink. Or your diet. Or if you have vitamin D deficiency. Or drink too much coffee.

So when I read that aspartame -- the ingredient in artificial sweeteners such as Equal -- is a major factor in developing MS, and you will start to improve immediately if you stop using it, I dismissed it as a mad harebrained internet theory. I still think so.

There are a lot of people who are conviced, however.

"So let me set the record straight now. Aspartame is one of the most dangerous substances ever added to food. Not only has aspartame been proven to make you fatter, it's been proven to cause some pretty serious diseases, not the least of which are cancer and neurological diseases." http://www.douglassreport.com.au/reports/aspartame.html?gclid=CN7xh7ntpaACFcQtpAodCU69aQ (Dr William Campbell Douglass.)

"Ingestion of aspartame adds to toxic reactions within the myelin, exacerbating Multiple Sclerosis symptoms." http://www.sweetpoison.com/multiple-sclerosis.html (Janet Starr Hull, creator of the Aspartame Detox Program)

"Dr. Russell Blaylock, a recently retired neurosurgeon, has been warning about the hazards of ingesting aspartame for years. In his book, "Excitotoxins: The Taste that Kills," Blaylock says that Aspartame and Multiple Sclerosis (MS) are closely related. The Multiple Sclerosis society, however, denies there is any connection between MS and Aspartame. It may be that the Society has chosen to hang on to industry funding rather than to warn its members of the toxic potential of Aspartame. Blaylock explains the biological mechanism by which Aspartame circumvents the blood-brain-barrier and gets at vital nervous tissues." http://www.truthinlabeling.org/Blaylock-AspartameAndMultipleSclerosis-Neurosurgeon'sWarning.html

There are many, many more. The theory has been roundly de-bunked by reputable MS information websites.

We are sure that Don's marked improvement over the past year is due to taking Low Dose Naltrexone (LDN). His mobility has not improved but he has improved in every other way, especially mentally. The only thing is, I am also conscious that since he has been in the nursing home, his diabetes is completely under control and he no longer has artificial sweetener in anything - has not done so for a long while. In the past he used to have large amounts of Equal and had lots of diet drinks.

Coincidence? ....... I guess so ....

Yard Work

2010-03-03T08:18:00Z

People ask me how I am doing, living by myself, and whether I get lonely. Well, yes I do; mostly I am content with my own company but sometimes it can be hellishly lonely. But worse than that, and the thing that you don't really realise until it happens, is dealing with all the stuff that we used to deal with together. Paperwork and documents are a constant burden - car insurance, paying the bills, doing tax returns (and believe it or not, I have only just today signed off on the 2008-09 tax returns for us both).

And the yard work is becoming a real burden. A hot summer with a lot of rain, and the lawn got totally out of control. I tried a routine of doing some mowing three or four times a week -- except when we were in the middle of a heatwave and just stepping outside was killing -- and would just keep plugging away with the mowing and the occasional whipper-snipping. But it was like the Sydney Harbour Bridge; by the time I had mowed the back, and then the side, and then the front, and then the lakeside -- it was time to start on the back again! So I finally admitted defeat, and got a lawn-mowing guy to come and do the lot.

It looked so nice, everything mown and trimmed all at the same. I got inspired to get a quote and have the lakefront cleaned up as well. It isn't really my territory, but it is what I look out at every morning. I had to admit, you could pretty much hide a herd of bison in there and nobody would know.

I also wondered about how many snakes or other wildlife lived there. Usually I just kept that strip mowed at the front, so that people could walk past. But an hour's work with a proper machine has transformed it. And no, they didn't see any snakes but it was apparently alive with mice.

Dinner at Chinatown

2010-02-26T08:55:00Z

People have been asking me about the dinner we had to celebrate Ross's 40th birthday.

It was a terrific evening -- very special indeed. It was the weekend of the Chinese New Year, so Sydney was buzzing, and we had decided to go to one of Ross's favourite restaurants, The Golden Century. One of the group said they had been to that restaurant many times with Ross, and knew what his very favourite dishes were, so we said, Please order for all of us, and that's what we'll have. If it sounds like some sort of shrine, that was far from the case, but it was a lot of fun. We told Ross stories, and we re-visited the past, and we heard new stories about Ross and about each other, and it was not really sad at all. Poignant, but happy.

It's incredible to think that Ross has been gone from us for almost two years, yet sometimes it is still as raw as yesterday. All those who came are still grieving, and always will grieve, but there comes a time when you have to hide the grief because people think you should "move on" and get over it. But, the loss is too huge for that to happen. I think about Ross every day. I know that for everyone there, it was a relief to be able to talk about him, and tell stories about him, and laugh about him and yes, even say derogatory things about him! and express some of the things that you can't say to other people once the first tide of grief is over and people get uncomfortable.

Eventually there came a point where we were, sort of, "Ross-ed out", and we started to chat about other things going on in our lives. And that was healthy too.

We were all very aware that it was an evening Ross would have loved to have been at.

Perhaps he was.

I can't get rid of the "red eye" (new camera) but I'll put in one photo of me at the dinner:

Taxi Drivers

2010-02-23T21:43:00Z

We use the disabled taxi twice every week, so we have got to know the taxi drivers quite well. They are a varied bunch of people!

Chrissy is on a drastic diet because her brother is getting married and she is trying to lose 15 kilos (30 pounds) - proudly showed me how loose her jeans were after the first week (lost 4 kilos) but Christmas has got in the way since then and she is getting discouraged. She also believes in the Rapture, and tells me she is a medium, and she does hairdressing at home when she's not driving a taxi.

Robyn is a primary school teacher and does regular days teaching in Sydney, which is a 90-minute drive each way. She drives the taxi in school holidays, because they are putting an upstairs storey on their house.

Neal is always keen to finish his shift because he is building a mud-brick house in his spare time.

Christopher has written a book that he is trying to find a publisher for. A historical fiction set in the time of Carthage and Hannibal.

But our favourite driver is Ross. He is in his 50's, has no children but he has two cats and a disabled wife - I think a physical disability plus some sort of dementia, don't like to pry too closely. He likes the shifts to be fairly slow, so that he can dash home and check on his wife and bring in the washing or whatever. Ross treats his wheelchair passengers with such care and tenderness, carefully tucking in the blanket, gently putting Don's slipper back on his foot when it falls off. He always greets Don with, "How are you going today, my friend?" and asks with genuine kindness, really wants to know. He refuses even to take a tip, always insisting on giving me back every cent of change due. One of Ross's passengers had to go to hospital for a couple of weeks - an old man who lived alone but often got the taxi to the club for a meal out. So Ross went to the man's home every single day, to feed his cat for him.

There are people in every walk of life who are sheer gold.

Underestimating

2010-02-19T10:58:00Z

We do underestimate people with disabilities.   A friend in a wheelchair tells me that when they go to fill in forms somewhere, often the person will turn to her husband and ask, "What is her date of birth? Where was she born?" etc.   An acquaintance who is blind says people shout at him, assuming he is deaf as well, and -- more importantly -- they leave him out of interesting conversations, no doubt on the basis that he is blind and therefore unable to understand.

I am just as guilty of underestimating Don, and I do it again and again.

We planned a dinner in Sydney to celebrate our son's 40th birthday. We agreed not to tell Don, because it would simply be cruel. Firstly, he would be terribly disappointed at not being part of it, when I was going and he wasn't, and secondly, he might not accept his limitations and would try to insist on going.

I eventually told Don that "a bunch of Ross's friends" were planning on going out to dinner on Saturday night, to one of Ross's favourite restaurants, to celebrate his birthday. Don was terribly touched, quite emotional at such a gesture and thought it a wonderful idea. Then he said, "Why don't you go, Barb?  Phone them and see if you can go along too."

I was a bit taken aback (not to mention a bit ashamed) and I said feebly, "Wouldn't you be disappointed if I went and you didn't?"

"No," he said. "I think you should go."

After this generous response, I started to re-think the impossibility of his attending, and made some phone calls to see if I could hire a wheelchair vehicle.  It's a two-hour journey there, then the dinner, then two hours home to make a very late night back to the nursing home, maybe midnight -- but still, not impossible. And it would be such a very special occasion if Don was there.

I had trouble tracking down a vehicle, and had not yet even discussed the idea with the nursing home, but I told Don what I was planning.   He just shook his head. "No, I won't go," he said quite firmly. "But I think you should go. Represent both of us."

So there you are. I keep being over-protective, or making his decisions for him and treating him like a child, or underestimating his commonsense not to mention generosity.  It's rather humbling.