Our son Roscoe has died.  We are preparing for his funeral next Monday.

O my son Absolom, would God I had died for thee.

        

I mentioned that two sons are now at home due to Don's illness.

But for our oldest son David, multiple sclerosis had already caused major disruption and havoc for his entire family.  He and his American wife with their little boy took the enormous step of moving countries because of it.  Last July, they both gave up their jobs in Memphis, Tennessee, farewelled friends and family, and arrived in Sydney without work, without an income, without a place to live, but determined that David needed to be nearer to his father.



Having them stay with us for an extended period transformed life for Don and made things incredibly easier for me.  Not sure just how I could have coped without that.  They moved out after several months but still close enough to visit often, and come when needed.  Plus be there for moral support, which for me has been as important as the physical assistance.

Now they are re-locating to Sydney, where David and Dedra have found jobs and an apartment.  We'll miss the proximity but Morisset is a stone's throw -- an hour's drive from Morisset to Hornsby, for example -- so hopefully we will still see them often.  I'll miss being a regular Nana.



It's no good wondering "What if?"    Because if Don didn't have multiple sclerosis, no doubt their whole life would be different.  Not necessarily better, but different.  But if he didn't have MS, life would be very different for a great many people.

        

Adversity can bring people together and make a family closer.  Our Ross was so dismayed at the deterioration in Don's condition that he has left his job in Queensland and moved in with us as a full-time carer for his father.  Says, "While I have breath in my body, Dad is not going into a nursing home."



Now our youngest son Stewart (aka Wodger - a well-known DJ on the music scene in Sydney, Melbourne and now Wellington) has applied for special leave from his job in New Zealand and has come home to Australia for five weeks, because of his concern for Don and feeling he is needed here for support.



So now we have all three sons home.



Of course, adversity doesn't always bring people closer in every case.  When he was chaplain at Royal Prince Alfred Hospital, Don met a young woman who had a tumour in her face and was preparing for an operation to remove the tumour but was warned it was likely the side of her face would drop.  She was in Sydney all alone, because her fiance could not face the prospect of what was to come, and had broken off the engagement. (It turned out that the operation was completely successful and her face did not drop after all - but, he was gone.)

I guess we are lucky.  No, not so much lucky, as blessed.

        

The neurologist who is managing Don's multiple sclerosis laughed gently when we asked about LDN, Low Dose Naltrexone.  http://www.lowdosenaltrexone.org/ldn_and_ms.htm  "Oh yes, that is the latest fad cure," he said.  "There are no proven results whatsoever."  I told him apologetically that I had looked it up on the net and it seemed to be worth trying.  "There's certainly no harm in giving it a try," he said indulgently, "and I'll write a letter to your GP so he can prescribe it if you decide to try it."

I hope I haven't made him sound smug or patronising, because he was neither.  As time has gone on and Don's condition has deteriorated, he has become increasingly caring and gentle.  He is clearly sceptical about the LDN but won't stop us from trying it out.

We knew that there have been no clinical trials on LDN.  http://www.mult-sclerosis.org/news/Jun2004/MSSonLowDoseNaltrexone.html  I also knew that naltrexone was used to treat heroin addicts and often used in the treatment of HIV, but these are very large doses, usually of 50 mg - 150 mg a day.  But what we are talking about in Low Dose Naltrexone is 3 mg a day, giving a totally different effect.

I have two main question marks over the use of LDN for us, and neither relates to the lack of clinical trials.  The first is that it is supposed to be mainly effective with the muscle spasms that are characteristic of certain types of MS.  But Don has the progressive form of MS, not the relapsing-remitting form, so I doubt that it will be of any help to us.

The second question mark for me is that although nobody knows the true cause of multiple sclerosis, it has been assumed up till now that it is somehow connected with the autoimmune system attacking itself, and so a lot of treatment has concentrated on suppressing the immune system.  The effect of LDN is to boost the immune function, which goes against the conventional logic.  On the other hand, "conventional logic" has not produced a cure to date, so perhaps that is not relevant.

        

Amazing results have been reported from the use of "low dose naltrexone" with multiple sclerosis patients.  In 98% of cases, there is no further deterioration in their condition.  I should repeat that in italics, with exclamation marks:  there is no further deterioration in their condition!!!

Naltrexone, the drug they give when someone has overdosed with heroin.  Naltrexone, the treatment for HIV, when given in high doses.  But apparently, this is very different.  It is not just "naltrexone", it is specifically "low dose naltrexone", or LDN, and is becoming widely used for a range of medical problems.  A friend has just been diagnosed with terminal cancer of the esophagus, and is being treated with LDN with great effect.

I am looking up as much information as I can get on the internet, and have a contact number to talk to someone in Newcastle who is working with this.

Suddenly we are filled with hope again!

I will find out more about this (possibly) miracle treatment, and put more on my next blog.  But the little I have found is encouraging.  http://www.lowdosenaltrexone.org/ldn_and_ms.htm

        

Sometimes I think the multiple sclerosis is causing Don a complete personality change.  Perhaps it's the depression which seems to permeate all day, every day, with feelings of despondency and an untypical lack of interest in life, church news and current affairs.  Perhaps it's the lingering effects of the methylprednisolone treatment which caused such huge and volatile mood swings.  Perhaps it's the MS itself, that causes confusion and fogginess in the brain and means he often can't follow conversations where previously he would have relished the repartee, or get the point in jokes where previously he would have been the one to make the witticism.

So it was vastly encouraging when Don was made the target at a little exercise they did at church the week before we moved from Muswellbrook.  The only church he can get into with wheelchair access at Muswellbrook, is a sort of of ecumenical informal family service at the Anglican church on Sunday evenings.  A couple of people were secretly selected by the minister, and for each one, the three defining characteristics of that person were read out.  Everyone had to guess who the person was.  (.... This of course led naturally to the defining characteristics of Jesus, and of his followers.)

The minister read out:  "Who is the person defined by these three adjectives:  interesting, compassionate, humorous."  A brief pause, then a chorus of several people saying at once, "That's Don Dufty."

Interesting?  Yes, the most widely-read person I have ever known, prides himself that whoever he meets, he can immediately find a point of contact with that person and talk about their area of interest.  But nowadays he can't read (bad eyes) and often loses the point of an article when I am reading it to him (the MS).

Compassionate?  Yes, in fact his whole ministry was grounded in compassion, and he has often found himself on the outer -- yes, even in the church!  -- because of his championing of the underdog.  But nowadays the debilitating condition means we are both wrapped up in our own problems and not so aware of others.

Humorous?  Definitely -- that dry humour and the quirky unexpected remarks were part of an inimitable style.  But nowadays the sharp wit has gone and it can be hard for him to follow even the most obvious humour.

And yet, for people who have only known him over the past few years, he was instantly recognisable by those three adjectives.

Very reassuring, that little exercise.  What it meant to me was, that all the difficulties and changes brought about by the multiple sclerosis are nothing but an overlay, and he is still the same person underneath it all.  That the defining characteristics are still recognisable.  That there is an unchanging core at the heart of a person.  That the qualities that made Don be Don, do still define him even when buried and hidden by the changes made by this insidious disease.

        

We always knew moving would be traumatic for the cat.  Even the sight of suitcases is enough to make our cat disappear for days.  Last Christmas I had the cat booked into the cattery but when the morning came, it took two hours to find her.  Got to the cattery well past the designated "booking-in" time, and apologised to the manager.  "I suppose you're used to this," I said to him.

"Too right," he said.  "I've had people phone me up on the day and say, We can't find the cat, so we're not going, can you cancel the booking please.  And I've had people phone me up and say, We can't find the cat but we're going anyway, but can you cancel the booking please."

We didn't want to waste two hours looking for the cat on moving day, so we took the precaution of booking Claude (well if you must know, it is one of those smart-alec names, Claude as in "Claude de Pussy") in to the cattery for the two days before the move.

When we arrived we kept her shut in the laundry until the removalists had gone, then made sure she was kept in the house for several days before letting her outside.  Seems to be fairly settled now, but must be missing the mice.  At Muswellbrook we had a dead mouse on the doorstep most mornings.

        

We are a highly mobile society --  Australians move on average every six years.  You would think, therefore, that all our services and utilities would have smooth and efficient procedures in place when you move from one place to another.  My experience has been that it varies from wonderfully efficient to abysmal.

I filled out my mail re-direction order well in advance; arranged for our paper delivery to stop on 24th and start at the new house on 25th; cancelled our old phone number and organised for phone and new number on the first Monday after moving in; phoned Dodo (internet supplier) to transfer to new number; and called Energy Australia about the electricity.  Also decided to keep the pay TV which is a complete waste of money for the most part but with Don's state of semi-blindness it is good to have.

Here's what happened:

The paper was not delivered after all, because they had it logged to begin at the new address on 25th May (instead of April).   Took a week to rectify.

Dodo charged me $99 for the privilege of changing our address and phone number, despite having us as good customers for six years, and then took almost two weeks before we could get "activated".  (Did you wonder why I was not blogging?  Hmmmmm?  Or, be honest, did you not really notice?? ....)

Worst of all, the mail re-direction did not take effect.  Neighbours kept phoning me about the newspapers on our lawn and the letters piling up in the old letterbox.  To my many phone calls, Australia Post assured me that they would investigate, then that an investigation had been initiated, then that I would be sent a letter with the results of the "investigation".  I kept pleading to just fix the problem and re-direct the letters and I didn't care about an "investigation", but yesterday we finally started getting re-directed mail (two weeks to the day! how hopeless is that!) and a letter apologising for any inconvenience.

To their credit, Energy Australia just quietly got on and did it, Foxtel (who we care least about) were totally efficient and impressive and gave us a promotional deal as we transferred from Austar, and Telstra came when they said they would.

I can't stand living with boxes, so everything is unpacked long since.  Only problem is, I can't find the cord that connects my camera to the computer, otherwise I would put in some pics of the past couple of weeks.

        

A trailer load, piled high, went to the tip.  All the neighbours' garbage bins have been used to overflowing, as well as our own.  Yet there are still walls of boxes, sorted and packed and ready to go.

What to leave behind?  That is the agonising question.  I threw out four crates of teaching notes and folders from my 17 years in TAFE.  Guess that is an acknowledgement that I don't expect to be standing in front of a class of students, ever again.  Being a multiple sclerosis carer meant it became increasingly difficult for me to leave the house long enough to teach a 3-hour class.  I finally realised I could not accept any more offers of casual work last November, when the last two times I was asked to fill in, I had to cancel at the last minute.

What about all Don's old sermons, and worship resources?  Too painful to admit "never again", even though I do know it is never again.  So, multiple sclerosis or not, the books from the study have been boxed and neatly lined up along the wall.

Most precious of all are the boxes of photos of our life together; at functions, travelling, getting out and about, with our children, laughing.  Life before multiple sclerosis took over. 

        

Multiple sclerosis affects the brain too.  We don't see it in MS sufferers as easily as we see the loss of mobility or loss of vision, or slurred speech, or lack of coordination -- so we tend to overlook it.  Most MS patients suffer some sort of mental problems ranging from slight memory loss to confusion or real dementia.

Don has bouts of confusion, and for years he has confessed to moments where his brain goes seriously "foggy".  Sometimes he forgets things like our phone number or which town we are living in, and will get upset and despairing when he has to stop in the middle of a sentence because he has lost his thread, or can't remember words.  Other times he seems to be sparking on all fours and is as sharp as ever.

So tonight at church when he was asked for one last message or comment, I crossed my fingers anxiously.

"In all my years in ministry," said Don, "I've learned that the one quality we as Christian people need to have is hospitality."

You could see eyebrows raised, dubious.

"Hospitality," he went on,  "means welcoming the stranger, opening up yourself, offering yourself.  It means being prepared to take a risk with people, it means preparing your life to welcome others and include others.  It means following the example of Jesus in the kind of open hospitality he showed to everyone he met."

The minister neatly tied up the whole concept with the reading for the day, "I am going to prepare a place for you, and get everything ready for when you come" (John 14).  He concluded, with a nod in Don's direction:  "Jesus embodied true hospitality."

So I need not have worried.  Don has never come up with the trite predictable comment but nearly always something slightly off-beat, and always fresh and original.

        

When we move house, I have always done my own packing.  The removalists come in and basically they just, well, "remove".  They march in and start carrying out furniture and boxes, quick as a flash, leaving us with bare walls, and the carpet to vacuum, before you can blink.

The removalists all have stories about times they had to do the packing for their customers.  We heard about one family that just got up in the morning and had breakfast, got into their car, and left.  The packers came in to find unmade beds, toys on the floor, even the breakfast dishes in the sink.

"Dishes in the sink!"  I exclaimed.  "What did they expect, did they want you to do the washing up for them?"

"I don't know what they expected," said the removalist.  "I wrapped up the dirty dishes and the dirty frying pan, and then when we got to the new house I unwrapped them and put them all in the sink."

Well done, guys.  That's what I call efficient.

        

We've signed a 6-month lease for a level house in Morisset Park.  No steps ... well, a small step into the front door, is all.

We have to leave in a week!  The day our application was approved for the house, I came home from visiting Don in the hospital, thinking I would start packing boxes for that 3-hour break in the middle of the day (patients are "resting", no visiting).  Came home, surveyed the enormity of it all, realised I didn't even know how to start -- and promptly sat down and watched TV for the 3 hours instead.

Now, of course, I am on a roll, and there are boxes in all directions, enormous piles of rubbish and equally enormous piles to go to St Vinnies  -- not rubbish for Vinnies, I only give away what I would be happy to buy myself.

Here is the front of the house, and you don't go down those steps you can see (go via the carport instead).



The living room looks nice and spacious now, probably nicer than when it is cluttered with all our stuff:



But what we really like is the idea of sitting out on the deck, looking out on Lake Macquarie.

        

A good belly laugh is a tonic, and can even lift the depression that hits MS sufferers.  I used to think, Well, of course anyone with multiple sclerosis would be depressed, who wouldn't be depressed with that slow insidious disability taking over your body?  But since then, I have learned that it is actually part of the condition -- again, nobody knows why, like so much in MS -- and depression is invariably much worse in people with multiple sclerosis than in people with equivalent but different debilitating conditions.  So it really is a part of the condition, not a result of the condition.

There is actually a joke site specially for multiple sclerosis!  http://www.shof.msrcsites.co.uk/index.html

And friends send me emails in the hope that I will read them to Don and give him the tonic of the belly laugh that I mentioned.  Here is the latest I received -- yes, I had heard most of them before, but I still laughed out loud, and so did Don.

        

"My cousin was diagnosed with MS," an aquaintance told me, "but she is one of these people never lets anything beat her.  She was just determined it wouldn't change her life, and she has just carried on!"

"What do you mean, she just carried on?"  I asked.  "What symptoms does she have?"

"Oh, all sorts of things, it's definitely multiple sclerosis all right," said the acquaintance, "but she never lets anything beat her.  She's been skiing twice, since she found out she got it, and she is determined she is just going to keep on skiing and doing everything she wants to do.  Maree is a very determined person!"

"How long has she had it?"  I asked.

"Quite a long while, I think.  But Maree is a person, she just won't let it get on top of her.  She will just keep on doing what she wants to do.  Determination, that's what Maree has."

Well gee whiz, that's great for Maree.  Never mind that the corollary is:  Don and all the other MS sufferers struggling with their increasing disability simply didn't have enough "determination".

It's like people in remission from cancer, who say, "I didn't let it beat me."  As if they are personally responsible for the wonderful gift of the remission.

Stop the research, don't worry about testing new cures for MS.  Just pump everyone up with grit and determination, and make sure they don't "let it get on top of them", and it will all go away ...

 

 

        

One of the most common symptoms for MS sufferers is heat intolerance -- http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=743 -- and we spend the hottest part of summer staying indoors and running the air conditioner full blast to the extent that everyone else is wearing woollen jumpers.  So here it is April, and coming into the cooler weather of autumn is such a relief.

Alan is a paraplegic (motorbike accident, years ago) and lives in the tropics of Far North Queensland.  He commented that when he attends meetings with multiple sclerosis sufferers, "It's like sitting in a refrigerator."

The MS Fact Sheets and other sites give lots of helpful advice on keeping cool.  Not just air-conditioning, but they advise try to cool the body inside as well as out, by drinking iced drinks, sucking on a block of ice.  Wearing a cooling bandanna thing that they sell, around the neck (soak in cold water first, it stays cold and damp for a long while.) Schedule your day so that you don't go outside the house in the heat of the day.  And so on.

http://ms.about.com/od/livingwellwithms/a/heat_tips.htm

I am convinced that this drastic setback Don is having at the moment is partly due to heat.  We had planned to spend the day in Newcastle, two hours drive, looking at houses.  (Yes, we HAVE to do something about our house with the stairs!)  When they forecast a top of 35 degrees (95 Fahrenheit) I considered not going, but I tend to set things in concrete and then go ahead and do them regardless, so I convinced myself that the car is air-conditioned, we would not spend much time getting in and out, and it is always hotter where we live than Newcastle in any case.

It was after our return that evening that Don had his second fall in two days, worse this time, and the ambos had to come again.  And the next day he was in hospital, barely able to lift a foot.

Maybe it is unrelated to the heat.  After all, the disabling effects of heat on MS are not permanent; once the person cools down the symptoms disappear, and that did not happen to Don this time.  I was going to call this blog entry "Blaming Myself" but maybe that is not correct and I am being too hard on myself.

        

Don is to be discharged and will be coming home in a few days.  They are ordering some equipment (electric lifter, special chair) and also arranging for community nurses to come and help at various times.  The geriatric doctor who made the assessment -- well, he's not a geriatric himself, but you know what I mean -- can authorise what sort of assistance, or level of care, a patient needs.  He knows more about multiple sclerosis than most other doctors we have seen, and he gave us advice on how best to manage at home.

Then he said, "There's something else I need to do.  With your permission, I will put your name down, Donald, for a high-care facility" -- jargon for nursing home -- "so that when the time comes that you can no longer manage at home, we can make a smooth transition."

After he left, Don was very subdued.  We just sat together, and finally he said, "Did you hear that, Barb?   I'm going to end my days in a nursing home."  Another silence, then he added, "Not just end my days; I've got my name down to go in now."

"Not for ages," I said.  "We can manage at home for ages."

He sat silently for a while, then in a tight, quiet voice he said, "Would you get the Bible?  Read me Psalm 46."

My voice was thick as I read: God is our refuge and strength, an ever-present help in trouble.  Therefore we will not fear, though the earth should change, and though the mountains shake in the heart of the sea; though its waters roar and foam, though the mountains tremble with its tumult.  ...  Be still, and know that I am God!  I am exalted among the nations, I am exalted in the earth.  The Lord of hosts is with us..."

Don said quietly, "Though the mountains shake.  We will not fear."

        

When you turn 68 you don't really expect anyone to make a fuss.  After all, it's not something with a Big-O at the end.  But when I turned up at the hospital to bring him home for the day, the nurses were milling around full of good wishes, and people called out "Happy birthday!" from deep in various wards as we passed.

Better than presents (a new t-shirt to wear home for the day, a talking book) were the phone calls, of which there were several once we got home -- made him feel loved and missed  --  and the birthday cards.  I had to read them more than once.  All right, they are pretty corny I admit, but here they are:

"Happy birthday Don!!  Remember the perks of being another year older today...
    *  Kidnappers are not very interested in you
    *  In a hostage situation you are likely to be released first
    *  No one expects you to run -- anywhere
    *  People call at 8 pm and ask "Did I wake you?"
    *  People no longer view you as a hypochondriac
    *  There is nothing left to learn "the hard way"
    *  Things you buy now won't wear out
    *  You can eat dinner at 4 pm
    *  You can live without sex but not your glasses
    *  You get into heated arguments about pension plans
    *  You no longer think of speed limits as a challenge
    *  You sing along with elevator music
    *  You quit tying to hold your stomach in, no matter who walks into the room
    *  Your eyes won't get much worse
    *  Your investment in health insurance is finally beginning to pay off
    *  Your secrets are safe with your friends because they can't remember them either
    *  Your supply of brain cells is finally down to manageable size
    *  You can't remember who sent you this list"

And a card with some recycled computer jokes that still made us laugh:

"Life before the computer:
    *  Memory  was something that you lost with age
    *  A website was a spider's home
    *  A hard drive was a long trip on the road
    *  And if you had a 3 1/2 inch floppy you just hoped nobody found out!"

... and a message that brought a lump to my throat:  "To Don, dear old friend, up against it these days" -- up against it, a favourite phrase of Don's in his prayers of intercession and elsewhere -- "trusting that you will find ways to savour and delight in the gifts and opportunities God will yet provide ... Much love ..."

A happy day indeed.  And now we have family visiting for the weekend so this birthday is becoming an extended one.

        

I keep saying what an obstacle it is for us to be living in a house with steps, and mentioned that they are just a couple of steps going down the split level from the bedrooms to the living rooms and kitchen.  I did say that they were also quite shallow steps, but when I look objectively I guess they are really rather steep.

This is our little dog Jebby watching me take a photo of the stairs.

        

On Sunday we decided to bring Don home from hospital for the day.  We had visitors, therefore plenty of people to help with wheelchairs, steps, in and out of cars.  And anyway, nothing happens in the hospital on a Sunday, no physio, just whiling away the day.  Could do that just as easily --  and more happily -- at home.

The wheelchair taxi wasn't available but we decided with some trepidation to give it a go anyway.

I didn't ask the hospital, just in case the answer was "no" (see previous entry "No TV" for my policy on that). Although I know we are free agents and nobody would actually stop us.  So I told the head nurse that we were coming home for lunch and would she ask if someone could help get Don ready and into a wheelchair?  She looked dubious and unhappy but was as helpful as she could be.

The staff peppered me with questions.  How would we manage the stairs in our house (we wouldn't use the stairs, just use one part of the house); how would we manage "transfers" ie wheelchair to car, car to wheelchair, wheelchair to lounge (hope for the best and manhandle if necessary); what sort  of bathroom facilities did we have (no worries, she'll be right!).

The nurses were literally wringing their hands with worry as we left.  They are all lovely, and the head nurse phoned up about 20 minutes after we got home to our place, asking anxiously if we had managed all right.  "Piece of cake!"  said son Roscoe.  "Couldn't have been easier!"  And he was right, it was not nearly as hard as we had all imagined.  Don did the "transfers" with no trouble, and getting the wheelchair up the few steps to our verandah was easy with all the visitors (Ruth and Nev) milling about to give a hand.

You could almost hear the sighs of relief from staff  all the way across town.

Don had a good day, sitting in his own comfortable chair, watching his own big TV that he can actually see, having his afternoon snooze in all the familiar surroundings of home.  It was well worth all the trouble.

        

When Don had his MS diagnosis confirmed at the MS Clinic at Royal Prince Alfred Hospital in Sydney, we received one great word of encouragement:  Professor Pollard, head of the clinic, said that there was so much research going on in MS that he was confident there would be a cure within two years.  Probably not something that could reverse the condition, however, so it was important to keep healthy, keep up the exercise, and hope to stave off the decline as long as possible.

We clung to that confident prediction, by so eminent a person.  But that was in August 2005, and by August 2007 we were very aware that the two years had come and gone, and still no cure.

But you read the literature, and it seems that every day there is a new cure being touted!  Here are just a few I've gleaned over the past week:

    *   A new pharmaceutical compound called MN-166 slows the rate of deterioration markedly http://www.rttnews.com/sp/breakingnews.asp?date=04/07/2008&item=35&vid=0

    *  Caffeine:  Mice given caffeine the equivalent a human drinking of 6-8 cups of coffee per day were protected from developing the animal version of MS  http://www.generef.com/newsstory.rss.html?pid=49903

    *  A new medication (unnamed) targeting lymphocytes (white blood cells) stops MS in its tracks  http://www.reenabled.org/2008/04/07/multiple-sclerosis-stopped-in-its-tracks

    *  MS may be caused by the HHS-6 virus, so can be treated with antibiotics  http://gwbandt.com/antibiotics/why-i-prescribe-antibiotics.htm

    *  You can protect nerve fibres by deactivating protein http://scamparoo.wordpress.com/2008/04/04/deactivating-protein-may-protect-nerve-fibers-in-multiple-sclerosis/

    *  A protein called collagenase-2 looks like a breakthrough success in MS treatment  http://03530.com/2008/04/02/potential-new-target-for-multiple-sclerosis-therapy.html

And so on and so on.

Well, we live in hope, of course. But I did have my faith pinned on that two-year prediction of Professor Pollard,