MULTIPLE SCLEROSIS CARER

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.

Lunch By The Lake

2010-02-13T07:46:00Z

Friends invited us for lunch. They live by the lake, and it was a beautiful day to sit in the shade of a tree to have cold drinks and eat salmon. They have steps into their house, so we just stayed on the lawn and didn't even go in. The nursing home have since told me rather severely that I should remember to "slip, slop, slap" because Don got a bit sunburned even though we were in the shade.

I

Don and I were both very fragile, for two reasons:

Firstly, it was the day Ross would have turned 40, and that was never far from our minds.

Secondly, a complete coincidence, but the friends were people we knew years ago, when we lived at Toronto, and have over the past year picked up that connection again and they have begun to visit Don regularly in the nursing home, and I have visited them myself, and now they invited us for lunch. Who are they? Their daughter was Ross's girlfriend through High School and beyond. For six years, in fact, their daughter was very much a part of our family, and our Ross was in and out of their house just as often. We as parents of the young couple got to know each other very well indeed, and shared a lot of stories, joys and tribulations over those six years.

So we loved to see pictures of their daughter, now married with children of her own, and hear stories of times past. It was a time when our loss became very sharp, but we loved hearing about her.

Kathleen, we loved you like our own daughter, and we are glad that you are happy.

A Birthday

2010-02-10T08:23:00Z

Ross turns 40 tomorrow.

Well, I suppose you think I should say "would have turned", since he died in May 2008. But I cannot think of him in the past tense; in fact when people ask what family I have, I always just say, I have three sons, and no I do not then go on to explain that one has died. I still have three sons, just that one of them is not here any more.

Anyway, to get back to the birthday. It seemed terrible to let his 40th go unmarked, so we are planning a celebration one evening (not tomorrow), going out to dinner with about a dozen of his closest friends, in Sydney at his favourite restaurant. His closest friend is flying down from Queensland for the occasion, his best mate dating from schooldays is leaving his own restaurant in a country town even though it is a Saturday night, and others have cancelled plans so as to be there.

As a carer, I struggled with how much I should tell Don, and have not told him about it yet. He simply can't attend, it is just not possible. And it seems cruel to tell him about it and that I'm going but he won't be there.

But I do hate this sort of secrecy and keeping him in the dark. So finally decided that I will tell him all about it -- except, I won't say that I myself am going. Just that all Ross's friends are going out to celebrate the birthday, and what the arrangements are. I know he will be terribly pleased that they are doing this, and greatly touched too.

I suppose the really loving (and honest) thing for me to do would be exactly what I just said -- ie, organise it all for the others but not go myself. But alas, I am not so unselfish.

In case you have forgotten, here is a photo of Ross:

The House-Sitting Issue

2010-01-27T22:07:00Z

When I went away for my week's holiday at the beach, I asked a homeless single mum with three children if she would house-sit for me. I have to tell you, the house was immaculate when I returned, and they had obviously respected my request to keep my own room off limits (personal papers, etc) and everything was in apple-pie order. In addition, they left after I came home because they were not comfortable staying in what was now my territory once I was back. (Kids to their father temporarily, the mother to the refuge while she continued to apply for rental houses.)

I had a bad conscience about continuing with the house-sitting plan after Don had expressed deep opposition. Well, I need to tell you that it was all resolved before I went away. I had a long talk with Don and told him about the lass and her studies and the financial blow that had led to her predicament, and I also said that I was wanting her to come to the nursing home so that he could meet her and her children, because I knew that if he met them personally he would be quite happy about the arrangement. She couldn't do that, but Don listened to everything and in the end it came down to trust -- he said he would trust me and trust my judgement and if I thought it would be OK then to just go ahead. And when I came back he wanted to hear all about how it had gone, but with interest, not suspicion.

So it comes down to trust, but it also reminds me how vulnerable and disempowered a disabled person really is. Because, I could spin the facts however I wanted, I could have left out bits that didn't fit in with how I wanted it to sound, I could very well have never mentioned the house-sitting arrangement at all and gone off for a week leaving him completely in the dark. Could have been completely manipulative but with the best of intentions. And he would never have known.

I wonder if the hardest thing of all for a person like Don -- all his life an activist, a doer, and could always be relied upon to make a decision -- is being so disempowered, so left out of the real decision-making. Caregiver Patrick made the comment on my blog that "thinking" for somebody else is one of the hardest things about being a carer, and I am beginning to realise that this is true.

Back From the Beach

2010-01-25T21:55:00Z

I spent five days at Ulladulla. Some other family members were holidaying there, and every morning we would all gather on the beach for swims, sun-baking and reading, helping the children make sandcastles. When I was young we burned to a crisp, but now everyone knows to "slip, slop, slap" (slip on a shirt, slop on some sunscreen, slap on a hat), and here is Gavin in his favourite hat:

Not everything went according to plan. My car died just as I was setting out, packed to the gunwhales; I had farewelled Don at the nursing home, dealt with his stress and anxiety at my driving so far alone, then decided to check out a funny noise the car was making since I was setting out on such a long journey (700 km, or 400 miles, from my place to Ulladulla, via Canberra where I picked up some family members). Lucky I did so, as it turns out a wheel bearing has gone and it is not drivable until fixed. And, of course, being January and under-staffed with everyone off to the beach, unable to fix for a couple of weeks. So I hired a car, and transferred everything out of the now-defunct subaru, and decided not to go back to the nursing home to tell Don all about it because it would only worry him more. And set off.

Of course, it is all going to cost an arm and a leg, what with the holiday cottage and the car hire, and who knows how much it will take to fix, and meantime I am on shanks pony so hopefully getting quite fit. But hey, do I look worried? It's just money.

A House Sitter - And a Dilemma

2010-01-13T12:25:00Z

I mentioned that I was going away on a beach holiday. Well, I now have a house-sitter. Or rather, I have a dilemma.

I have offered my house to a homeless person, a single mum with three children, and the "housesitter" thing is a way of giving them some dignity rather than charity. Short story is, the family who are sort of neighbours have been evicted so their flat can be rented out to staff at the convenience store up the road. They haven't been able to find a place, and I am going on holidays and leaving a three bedrpom house empty. So I said they are welcome to stay here and can feed my cat and house-sit for me.

My dilemma is, that after I told Don that I had offered the house, he went very quiet and didn't say a lot, but today he said. "'I'm not happy about what you've done. I don't think we should be offering our home to these people. I want you to put them off."

I told him that I didn't think they were going to come anyway. They seemed very suspicious about my offer. So I told him that. But today, late in the afternoon, they turned up at my door, and she is at the women's refuge but they would only take her for three days, and she asked if she could possibly take me up on the offer. I showed her the house and the beds, and her kids were very sweet and asked if they would be allowed to play on my piano, and the little boy asked if he would be allowed to play with the dog, but I told him that the dog will be cared for by friends while I'm away.

My dilemma is that Don is still my husband he has said that he wants me to put "these people" off.

"These people" ??

Anyone who knows Don knows, that he would have been the first person to offer "these people" a bed. And I tell you, after untold years of marriage and parish needs, I cannot count the number of times I made sandwiches for 'these people" or put up a stretcher in the hall for someone down on their luck. Or had to go and fetch my wallet to provide cash. Or made up beds in the spare room.

My dilemma is that I know Don would be the first person to help "these people", and he would have taken that young mum under his wing and started kidding around with the little boy and chatted comfortably with the little girls. And yet, he is helpless, in a nursing home bed, and he can't see " these people" face to face, and he thinks I am doing the wrong thing, and I am going ahead anyhow. I am ignoring his expressed wish. I would like to bring the family to meet him because I know he would immediately want to give them our house (...our car, our funds, whatever, I do know this of old) but too late, I'm leaving on the day after tomorrow and they are busy tomorrow so we cannot have that contact.

But, tell me.what is the worst that can happen? And how can someoone who calls themself a Christian, go away and leave a three-bedroom house vacant, when a family that is down on its luck, doesn't have a place to lay their head. (Yes, I know I am naive....)

I'll let you know how it goes.

One of the hardest things nowadays is making decisions on my own. Harder still, I now realise, is making a decision that is different from the one Don makes. And because he is powerless and I am not, I do the thing that I decided.

How moral is that?

Thanks For Your Comments

2010-01-13T10:06:00Z

You have no idea how it warms my heart to get comments from readers, and I have a sort of wondering amazement that people say they have actually missed it when I don't do an entry for a couple of weeks. Sometimes I do question the purpose of my blog. Some friends have suggested it is "therapy" for me, but I like to think it is more than that. Sometimes I wonder if I am not just doing a glorified sort of Facebook entry. Or a personal diary of my life but putting it out there in public.

But basically, I hope that by conveying what is going on in my life, and some of the issues I am struggling with in my own life journey, I am able to connect with other people and discuss things that resonate with them too. And find common ground with others who are carers, or have had to put someone in a nursing home, or have had contact with multiple sclerosis in other ways -- or, simply, those who have imagination or compassion and can identify with some of the issues, as I share my life online.

So thank you, Lesley and Ruth, for your good wishes about Christmas, and Harriet for sharing that you also care for someone with MS (and, you "missed" my blog!!!) , and another Harriet for helping me fix a crooked picture and that it wasn't really about ham it was about Muslims, and Daphne for your lovely remark that you were moved by the story. And Elizabeth who knows what it is like to have MS and sit in a wheelchair while people talk over your head, and Cranky for advice about a wheelchair vehicle. And everyone else who adds something to my blog, I wish I knew you all.

I am going away -- yes, again!! seems I am never home, as Don has never tired of telling me in all the years of our marriage -- a week away at the beach with family. So I might get to an internet cafe but I doubt it.

Of course, Don can't come. This is one time when I don't have a pang at doing something he is missing out on, because he was never all that keen on beach holidays. It was more my thing than his, plus it was a great family thing. But for Don --- the sand! and his fair skin always burned! (while I tanned at the drop of a hat)! and all the packing and all the unpacking! and a quick dip is all very well, but a whole afternoon in the surf???

I'll be gone less than a week, and he says he will be fine.

Christmas Without Ham

2010-01-08T21:02:00Z

Frankly, I didn't know it was compulsory to have ham at Christmas. When I was young, we had roast chicken (which Dad killed and dressed) with all the trimmings, and then plum pudding with money inside. Ham was never even considered. Of course, nowadays we usually have ham, among other things. But since we had invited a Muslim family for Christmas Day, it seemed reasonable to forego the ham. We still didn't exactly starve on the day, with turkey, cold leg of lamb, lots of salads, and then some special desserts.

But when I casually mentioned that we would be having a Muslim family for the day, and laughingly added, "So - ham's out!" I got some surprisingly strong reactions. "You should have the ham!" people scolded. "They don't have to eat the ham, they can eat something else! This is our country, these are our traditions, and we are not forcing them, but they need to realise how we do things."

I said mildly, "No, we don't have to have ham. There's plenty of other stuff we can have instead, it's not that important." But it was terribly important to some people and they would go on and on, insisting that I provide ham and that nobody would be forced to eat anything they didn't want.

I think if I was in another country and visiting a family who regularly ate, say, rat or dog, I would think it a courtesy if they served something else for the time that I was there.

Needless to say, I did get a small ham as well, which we hoed into on Boxing Day and thereafter.

Don is not as mentally sharp as he used to be (an understatement) and I don't know if that is a normal effect of MS and have not the courage to inquire. But on Christmas Day we asked him to say grace, and he did so with a great deal of sensitivity. He gave thanks for the day and the food, and for family and for new friends. And he hesitated briefly before finishing "In the name of God, Amen." He normally ends, "In Jesus' name", but clearly he wanted this to be a totally inclusive giving of thanks, a prayer that could be shared by everyone there.

This is Don about to say grace, but how come my picture is so lop-sided?

Christmas Visitors

2010-01-07T08:19:00Z

Christmas was far better than I had expected. I was determined not to sit about being miserable and thinking, "Our second Christmas without Ross" -- but then our son in New Zealand was not able to get home for Christmas after all, and so we would be missing two of our three sons, and it was all going to be a bit of an effort.

But then our other son asked if they could invite some neighbours from Sydney. A Pakistani family, a single mother with two children who often played with our Gavin. A Muslim family for whom Christmas meant a day off work with everybody else celebrating while they tried to fill in a day. A family who are trying hard to fit in to Australia and who were delighted at the invitation to "an Aussie Christmas".

So I got enthused again after all, and dusted off the decorations and actually bought some new ones -- I actually put up a tree! -- and planned a special menu, and went shopping, and it was all quite a lot of fun. I had five-year-old Gavin with me so we made a manger scene too - my attempt to bring some balance to the "Santa and bling" philosophy of Christmas.

The Pakistan family had a wonderful time, and it was a happy day for us all.

And I was thrilled to get some really nice gifts too!

Wheelchair Vehicle

2009-12-13T23:17:00Z

Perhaps we made a mistake in not buying a wheelchair van while we had the chance.

My cousin died last year of motor neurone disease, and after his death I was offered first option to purchase the van they had, which had a ramp and all the fittings to take a wheelchair. I did take it on a month's trial but then decided against the purchase. My cousins had to have their own transport, as they lived in the Queensland outback where wheelchair taxis can only be dreamed about. Plus, they lived miles out of town.

I was in two minds about it on account of the economics. It costs in excess of $20,000 to get such a special vehicle, and I thought that is an enormous number of taxi rides before you get anywhere near that figure. (Plus we are subsidised by the government for half the fare, up to a maximum of $30.) But the deciding factor was not cost, but Don's welfare. The one and only time we attempted a longish trip was a disaster. We drove to Sydney for lunch with friends last year, and Don not only called out continually that he was terribly uncomfortable and wanted to stop, but by the time we arrived he was in a state of total collapse and was admitted to hospital, where they kept him for a week, the first three days in intensive care. Sitting bolt upright in the wheelchair for such a long trip was something his body could not cope with. It was not a particularly long trip, a matter of 1 1/2 hours, it's about 120 km or 70 miles. So we thought, if we are just going to be confined to local trips we may as well stick to taxis.

But now I am not so sure. We have a better wheelchair, one that reclines and also supports his head. And on a good day he seems better able to cope with going out, has less fatigue. Having our own transport would free us up to go places and do different things that we can't sensibly use taxis for, eg go for a drive for an afternoon's outing.

I did have a cursory look on ebay and on a disability site, and wheelchair vans are out there, still available. Our Subaru Outback will need to be replaced some time - at present it is coming up 10 years old, has 280,000 km on the clock and never a thing wrong with it, how's that for a recommendation?! - but maybe we'll look at a vehicle for Don rather than a regular vehicle.

I seem to be always writing about transport; the last entry was about wheelchairs and airlines. Because the issue of transport and mobility is absolutely paramount for anyone with a disability.

Wheelchairs and Airlines

2009-11-30T19:51:00Z

Kurt Fearnley is an Olympic paralympian. He is a double amputee (no legs) and has done amazing things such as "walk" the Kokoda Trail in New Guinea by dragging himself along the track with his arms and elbows.

He hit the headlines in Australia last week because Jetstar Airline "forced" him to check in his wheelchair as luggage, and they then provided him with an airport wheelchair plus an assistant to escort him onto the plane. Kurt normally wheels himself rather than be pushed, but he wasn't able to do this in the wheelchair they provided. He was so outraged at the idea of being pushed that he refused to use the wheelchair, and instead, dragged himself to the boarding gate and onto the plane. Headlines screamed "Airline forces paralympian to crawl" and "Disabled deprived of wheelchair", and talkback radio seethed with outrage. Kurt gave interviews saying that he had been totally humiliated by the airline and that it was akin to "having his legs tied together, his pants pulled down, and paraded publicly".

Jetstar apologised and said that they are reviewing their procedures for disabled people.

Well excuse me, Jetstar, but I don't think you have anything to apologise for. The airline carries about 450 disabled people every week, and in my experience they bend over backwards to accommodate and assist them. Of course you have to check in your own wheelchair! Normal wheelchairs don't fit into the narrow aisles of aircraft. And appointing a staff member to oversee and escort the person is a big gesture fo a budget airline - or any airline for that matter. Kurt wasn't forced to crawl, that was his choice.

But I myself am outraged on behalf of all disabled people, by his claim that he was publicly humiliated by the airline. Kurt, believe me, you can sit in a wheelchair and be pushed by someone, and yet still retain your dignity and your self-respect. We have worked hard to change attitudes and create a world where people with disabilities are accepted and respected. There is no disgrace in what the airline was offering. I think Kurt has actually done disabled people a disservice.

I wrote a letter to the paper about it, as follows:

"I am bewildered by the outcry over Kurt Fearnley being "forced" to check in his own wheelchair as baggage. There is nothing new about that; a regular wheelchair simply cannot fit into the aisle, and common practice is for airlines to provide their own compact, narrow wheelchair for the duration of the journey. Whenever I have travelled with my husband, who has multiple sclerosis, that has been the norm, and we have also been allocated a staff member to push the wheelchair from the check-in counter to boarding. I understand Kurt was affronted at the idea of being pushed, and so he crawled instead. That was his choice, but I hope his protests were not implying that there is no dignity or self-respect for a person in a wheelchair being pushed by someone else."

Of course, they didn't print it. Politics exploded in Australia this week, and nobody wants to read, talk, or think about anything else.

Changes

2009-11-28T19:51:00Z

Our son and his family moved to Canberra a week ago. This of course means big change in our life as well. I was in the habit of driving to Sydney every Thursday afternoon and picking up grandson Gavin from pre-school by 3 pm and then minding him until the weekend. On Saturdays the family would either come for the weekend, or else we would go to Sydney by train.

Canberra is five hours away, whereas Sydney is not much over an hour. So there is no more weekly childminding, no fortnightly visits from the family, no more quick dashes to Sydney due to one sick child and two working parents. And of course less cooking, more free time. And more time to spend with Don, because Gavin and I would always visit Grandad but usually only for fleeting visits of less than an hour, because there is not a lot for a 5-year-old to do in a nursing home, even when we went equipped with books and drawing materials.

With less happening in the week, I think I need to plan my time better. It's all too easy to drift along from day to day and never do anything - walk the dog, visit Don, catch up with a few chores, occasionally go to the supermarket. You may notice, with all this extra "free time", I haven't written a blog entry for weeks. And my house seems to have degenerated into a shambles.

I'd better write out a list.

Email

2009-11-14T02:37:00Z

Occasionally in the past I have registered my objection to an email that has been broadcast to me (usually religious emails promoting what I call "prosperity religion", which I regard as totally at odds with the gospel).

But now I myself have received objections to an email that I sent off to numerous people.  The original email came from Don's school reunion contacts, and it made me smile, so I forwarded it on. Here it is:

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SCHOOL -- 1959 vs. 2009
Scenario :  Jack goes rabbit shooting before school, pulls into school parking lot with rifle in gun rack.
1959 - Vice Principal comes over, looks at Jack's rifle, goes to his car and gets his rifle & chats with Jack about guns.
2009 - School goes into lock down, Star Force called, Jack hauled off to jail and never sees his ute or gun again.. Counsellors called in for traumatized students and teachers.

Scenario:  Johnny and Mark get into a fistfight after school.

1959 - Crowd gathers. Mark wins. Johnny and Mark shake hands and end up buddies.
2009 - Police called, arrests Johnny and Mark.   Charge them with assault, both expelled even though Johnny started it. Both children go to anger management programs for 3 months. School board hold meeting to impliment bullying prevention programs

Scenario:  Robbie won't sit still in class, disrupts other students.
1959 - Robbie sent to office and given 6 of the best by the Principal. Returns to class, sits still and does not disrupt class again.
2009 - Robbie given huge doses of Ritalin. Becomes a zombie. Tested for ADD. Robbie's parents get fortnightly disability payments nd School gets extra funding from state because Robbie has a disability.

Scenario :   Billy breaks a window in his neighbor's car and his Dad gives him a whipping with his belt.
1959 - Billy is more careful next time, grows up normal, goes to college, and becomes a successful businessman.
2009 - Billy's dad is arrested for child abuse. Billy removed to foster care and joins a gang. State psychologist tells Billy's sister that she remembers being abused herself and their dad goes to prison.

Scenario :   Mark gets a headache and takes some aspirin to school.
1959 - Mark gets glass of water from Principal to take aspirin with.
2009 - Police called, Mark expelled from school for drug violations. Car searched for drugs and weapons.

Scenario :   Pedro fails high school English.
1959 - Pedro goes to summer school, passes English and goes to college.
2009 - Pedro's cause is taken up by state. Newspaper articles appear nationally explaining that teaching English as a requirement for graduation is racist.   AFRE files class action lawsuit against state school system and Pedro's English teacher. English banned from core curriculum. Pedro given diploma anyway but ends up mowing lawns for a living because he cannot speak English.

Scenario :  Johnny takes apart leftover firecrackers from 4th of July, puts them in a model airplane paint bottle, blows up a bullant nest.
1959 - Ants die.
2009- Star Force, Federal Police & Anti-terrorism Squad called.    Johnny charged with domestic terrorism, Feds investigate parents, siblings removed from home, computers confiscated. Johnny's Dad goes on a terror watch list and is never allowed to fly again.

Scenario :   Johnny falls while running during recess and scrapes his knee. He is found crying by his teacher, Mary. Mary hugs him to comfort him.
1959 - In a short time, Johnny feels better and goes on playing.
2009 - Mary is accused of being a sexual predator and loses her job. She faces 3 years in Prison. Johnny undergoes 5 years of therapy.

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OK, everbody, settle down please! I do know that sexual harassment is a serious issue and it's better to overdo preventive measures than allow the possibility; I do know that bullying and violence are endemic and should never be treated lightly; I do know that parental abuse is common and the school cannot turn a blind eye; and I realise how important remedial programmes are for problem students. And no, I don't think that even in those laid-back days, any teacher would really be so nonchalant about a student turning up with a gun!

But hey, lighten up, everybody. Didn't you give a wry smile and admit to a grain of truth there somewhere? As a TAFE teacher, we were no longer allowed to give an aspirin to a girl with period pain; and as a Kids Club leader, I and the other leaders became very wary of cuddling a little kid who was crying. So the email was not completely off the mark.

I was going to end this by saying that if there was a way to Unsend an email, I would do so. But now I have talked myself into thinking I prefer dialogue and a bit of robust debate.  Thanks, everybody.

The New Laptop

2009-11-08T22:30:00Z

I bought myself a glamorous-looking red laptop:

I hear you ask, Why? And I do ask myself whether it was just indulgence on my part, and have to admit that paying an extra $27 for the red instead of black was indeed sheer indulgence, but what the heck.

But the reason I bought it was that I got this brilliant idea that I could take it to the nursing home, share with Don those cute emails that people are always sending, type stuff with him assisting (eg replies to letters), and also if he is starting to doze off a bit can sit there and do my own thing. Because when he gets dozy he is still disappointed if I go too soon.

Trouble is, I don't know enough about computers. I thought with the wireless card that I could just access the internet wherever, but that's not the case. So, I can work offline but that is less than I had hoped.

Also, this computer has games on it, still intact. I had to delete the games from my regular computer because I found they were taking over my life and time. I might have to do the same with the laptop, but for the moment am enjoying a week of unadultered game-playing, and my spider solitaire statistics are impressive!

Another Christmas

2009-11-05T12:25:00Z

Compassionate Friends is a support group of people who have lost a child. I was asked to write something for their next newsletter, and this is what I sent this week:

Christmas looms. Our second Christmas without Ross, and I am burdened by the whole idea of it all. Ross died at the age of 38 in May last year, of a cerebral aneurism. Last year I just wanted Christmas to go away completely, and in a way we made that happen. Our other two sons spent Christmas with the family of their partners – one in New Zealand, one in America – and we shouted them their tickets back, ostensibly as a Christmas gift, but in reality we just wanted to get rid of the whole thing.

I’d prefer never to have a family Christmas again, just go to the nursing home where my husband is a resident (multiple sclerosis) and spend it there as we did last year – completely different from every Christmas of the past, and among acquaintances or near strangers. But Ross’s brothers deserve better, they are entitled to have as happy a Christmas as we can make it. And they are grieving too, and need to mourn their brother as we all celebrate Christmas together.

So I guess we will arrange gifts, and “the feast”, and perhaps I will try to decorate the house a little although that is a big ask. Listening to the Christmas carols is the worst; “Silent Night” breaks me up every time. It’s music and songs above all, that bring back memories of times past.

Someone in Compassionate Friends said they always set a place at the table on Christmas day for the missing person, and put a gift under the tree for them also (give it away to charity later?). Perhaps we’ll do that.

MS, Fatigue and LDN

2009-10-27T04:13:00Z

Last weekend my family - sister and brothers - all came to Morisset for a family get-together.

Don spent all of Saturday at home, right through until 8.30 pm. Then home again for the barbecue on Sunday. (I think we are single-handedly keeping the wheelchair taxi solvent, these days.) As a rule, when Don comes home for lunch I know that he will be ready to go back after a couple of hours so that he can go to bed -- although I've noticed lately he is staying awake and alert for longer. So I thought those two days would have laid him low for a week, but both days he enjoyed every minute, and on Monday he was bright as a button and wanting to know when I've booked the taxi for him to come home again.

That Low Dose Naltrexone (LDN) treatment we have got him on may be experimental, and yes I do know all about the warnings of "no clinical trials" etc -- but not only is Don vastly improved in his mind and spirit (and maybe strength as well but that's another story), but the fatigue is not nearly as bad. Fatigue, the great demon that plagues all MS sufferers regardless of the type or degree of their disability. According to Professor Pollard of the MS Clinic at RPAH, it is the one common feature and the thing that every MS sufferer complains about. Fatigue saps the quality of life enormously, because it stops the person from doing so much, even when they have the capability.

Having Don home and able to participate in what is going on, and actually staying awake, is marvellous.