I had a really beautiful dream.

I dreamed I was pushing Don in his wheelchair along a promenade by the sea.  In the dream I stopped, then went and leaned on the breakwall and I chatted with Don as he sat there in his wheelchair.   Don said suddenly, “I’m sick of this, I think I’ll get up and come with you.”  And he got up out of the wheelchair and came and stood beside me.   I was surprised, but pleased.  I said to him, “I didn’t know you could do that.”   He shrugged, trying to look modest, but rather smug.  We stood together and looked out at the water and we counted the ships that were waiting in the harbour.

Then he put his arm around me and we strolled along the promenade together.

There is good news and bad news.

The good news (yes, I was surprised there is such a thing as “good news” too!) is that if you have MS, you have a significantly lower chance of getting cancer.  Researchers analyzed the medical records of more than 20 thousand people diagnosed with multiple sclerosis. The study found that for people with multiple sclerosis the risk of cancer was 10% lower than in the control group.  There is some debate as to whether this is due to people changing their lifestyle after diagnosis, but latest thinking is that it is something to do with the condition itself.  (I’ve lost the link about all this, will post if I track it down later.)

Some bad news is that although there is a fairly effective treatment for the “relapsing-remitting” form of MS (Don has the untreatable “progressive” form), the treatment carries some risk of heart damage and quite a high risk of leukemia.  http://www.sciencedaily.com/releases/2009/04/090430101441.htm

More good news – and this is quite thrilling – is that there has been improvement for MS patients who have been injected with stem cells of their own fat tissue.  Not just “improvement”, but an actual REVERSAL of the disease, to the extent that they are seeing regeneration of the myelin sheath that gets destroyed in MS. http://www.privatehealth.co.uk/news/april-2009/fat-tissue-multiple-sclerosis-30465

So we are trying to get Don into an exercise programme, because his muscles are wasting away through lack of use, and if by some miracle there is a chance for him in the future, he needs to be strong enough to actually benefit.

Why did I call this blog “trivia”?  Nothing trivial about it.  Leukemia is devastating, the possibility of a cure is life-changing.

A couple of days ago, I booked the wheelchair taxi and brought Don home for the day.  Trying to do this a couple of times a week nowadays.  We had lunch, sat out on the deck for a bit, then we watched the movie “Notting Hill”.

If you have seen the movie, you will remember there is a point where Hugh Grant and Julia Roberts are parted, and it looks like it is all over between them.  As he mopes about London, the background song is:

“Ain’t no sunshine when she’s gone
It’s not warm when she’s away;
Ain’t no sunshine when she’s gone
And she’s always gone too long, any time she goes away.”

I was only half listening, until Don turned to me and said very quietly, “That’s how I feel about you.”

People sometimes look a little askance at the notion that I go to the nursing home every day to be with Don.  Well, that’s why.

For some time, Don has been pressing me to arrange a trip to Griffith (in the Riverina) because his 97-year-old mother is in a nursing home there, and we haven’t seen her in over a year.  I’ve tried not to be brutal and say, You simply cannot travel any more!  But I had a sudden inspiration, that in fact if there was something drastic such as a funeral, well there actually is a way.

I told Don that I ought to phone his neurologist and discuss getting permission for a course of methylprednisolone if there is a sudden need for Don to leave the nursing home, eg when his mother dies and he wants to attend the funeral.  It would be an 8-hour drive each way plus at least one night away.

In my opinion, methylpred is like a miracle drug for multiple sclerosis.  When Don, bedridden, was put onto a course of treatment last year, he was standing (with assistance) the next day, and was shuffling along the corridor (with a walking frame and two assistants) a couple of days later.  It was unbelievable.

Only problem with methylpred:  It doesn’t last.  Average duration of the improvement is 9 weeks.  And there are considerable side-effects, eg it depletes the body’s calcium (so he is still on calcium supplements 13 months later), possibility of organ damage if used long-term, and the mood swings during the course of treatment are terrible – swings from anger to despair to weeping with joy, emotions out of control completely.  And growing evidence of an actual deterioration in the condition subsequently.

To my surprise, Don didn’t even consider my bright idea.  He just said matter-of-factly, “No, when the time comes, you will have to go with our son and represent the family. I won’t be able to leave here.”

He has accepted the sad reality with his usual equanimity.  Thanks Don, for making it easy on us.

Don is remarkably accepting about his condition.  (He puts this down to his background of Presbyterian Calvinism…)  Doesn’t complain, doesn’t go on about all that he has lost, all that he can’t do.  Yes, there are times of real despair, such as my blog post about a year ago, Psalm 46.  And he suffers from depression, which apparently is an intrinsic part of multiple sclerosis, although I am sure that the depression is also a normal consequence of living with the limitations of MS and the frightful future one faces.

But you can take facing reality only so far.  And lately, I have been having some very difficult visits with Don, because he wants me to drive him to Griffith in the Riverina, to visit his mother.  She is 97 years old, and is in a nursing home, and they tell us she has not been well.  Actually she is in better shape than Don in a lot of ways, as she is able for example to get herself to meals independently, with the aid of a walking frame.  But now it seems she is deteriorating.

At first I just did the usual thing of being rather vague, and expecting by next day it would not be raised again.  Don has raised the idea a number of times in the past, but has not persisted.  But now he will not drop the idea, and is insistent that we go to Griffith for one last visit to his mother before she dies.  And is quite pressing about it, and practical too, wanting me to bring a suitcase so we can pack his things, and working out what time we would need to leave to do the trip in one day, stay one night, and then drive back the next day.

So I said we would need to work it out with our son David to come with us, as I needed someone else to help get Don in and out of the car, wheelchair, bed, etc.  And that would probably mean bringing our 4-year-grandson as well, so not to be undertaken at the drop of a hat.

But staff told me it would not be feasible even with someone to help, but we would need to hire a lifter and other equipment at the other end.

Eventually I said to him, Look if we were able to go to Griffith and stay overnight, you would be living at home with me, because it would mean we could manage.  So he got a bit cross and said huffily that I was trying to make difficulties, that I just didn’t want to go to Griffith.  My response was, that in fact I am more concerned about when his mother dies, because it seems unthinkable for us not to go her funeral, but I’m blowed if I know how we could do it.

J K Rowling

The mother of J K Rowling, author of the Harry Potter books, suffers from multiple sclerosis, and Rowling has been actively involved in the MS Society – supporting, promoting and fundraising – for a number of years.  She became Patron of the Scottish MS Society  but has recently quit from that position due to differences in the direction the society is taking (partly because of a reorganisation that is going on, with conflict over who is to manage the funds, Scotland or London).

When I read that article, the detail that struck me was the throwaway line that Scotland has the highest incidence of multiple sclerosis in the world!  Does anyone know why?  Yes, I realise that the further you get away from the equator, the higher the incidence, but there are countries that are further away than Scotland.

Another MS mystery.  So much research, so little knowledge.

It had got to the point that they were not going to agree to Don coming home again.  Reason being that he has collapsed and become unconscious, and ended being ambulanced to hospital, no fewer than five times over the past six months – and every single time the collapse happened when he was sitting up in his wheelchair.   The last collapse was only a fortnight ago when he was home for lunch, and the nursing home were suggesting he’d better not visit home any more.

He has never had a collapse while in bed or in the recliner that he uses in the nursing home.  The only explanation seems to be that he can’t sit bolt upright for extended periods, any more.  Presumably the MS is making him unable to hold his head erect indefinitely, and so he slumps, and blocks off his airway.  I am no longer able to “transfer” him to a more comfortable chair, so he has to stay in the wheelchair all the time he is out.

I needed to trial something and see if it made a difference.  The Yellow Pages gave me a marvellous place called Hospital at Home, which sells or hires all sorts of equipment.

Here’s what I got for Don:

As you know, one effect of multiple sclerosis is frequent overwhelming fatigue, and the extended headrest makes it possible for Don to rest while he is in this chair.

Or even have a snooze while he is at home:

So we are now back to regular visits home again.

There was a news item last week about an MS sufferer who had his walking stick stolen.  He had left it at a service station, and some young hoodlum had walked off with it.  A radio station broadcast a plea for its return, and there was bit of talkback as a result – someone objected that if he left it behind then he must not really need it, someone else hotly came to the man’s defence saying that with MS, sometimes you are fine and other times you are bad.  The theft was apparently the culmination of this man’s bad luck: he had lost his job, and as a result lost his house, in the meantime he had sold off most of his stuff in a vain endeavour to keep the house, and then – to cap everything! – his walking stick got stolen.

Don’t laugh!  Walking sticks seem to be very significant!

Don doesn’t use one any more, having progressed (if that is the word I want, hardly appropriate, is it?) to a walking frame and then a wheelchair.  But here is his collection:

Why so many?  Do people really need more than one?  Apparently so.  I took a photo of them all and when I was with Don yesterday I asked him to remind me what they were all for.  Here’s what he said:

  • Far left is his father’s walking stick, great sentimental value, in fact Don has engraved it with his licence number, same as he does with valuable things like the laptop
  • Next was the very first one he got, ten years ago – son moving out of his shared house, current girlfriend hands the walking stick to Don and says, Don’t  know where this came from, but would it be useful to you? – at which I thought he would have been very offended (we’re not THAT old!) – but it was in the days when he started to get inexplicably staggery, and accepted it gratefully.
  • The little one was just a knick-knack at a market – too small to be any use, but decorative
  • Next was purchased at an aboriginal arts and crafts shop, after a lengthy and companionly chat with the maker
  • The dark one on the far right was bought one day when we had gone somewhere without a walking stick and he got very staggery and needed one.

Remember last century when they used to put leeches on sick people?  Oh, wait, it was the century before  last, wasn’t it.  Well, the wheel has turned full circle, and we are back to parasites as a possible treatment for MS.

You can check out this link for yourself   http://ms.about.com/b/2009/03/11/hookworms-a-natural-multiple-sclerosis-treatment.htm

Hookworms, little tiny parasitic worms, are being investigated as a possible treatment for multiple sclerosis. The idea is this: people infected with hookworms experience a suppression of the immune system. That suppression may be enough to slow the rate of relapse or even modify existing symptoms.

What happens in the study, being conducted at the University of Nottingham and funded with 400,000 pounds, is that people with multiple sclerosis will be infected with 25 hookworms through a patch placed on the skin (it is painless). Nine months later those worms are flushed from the people’s bodies. The good news is that it is very safe and very cheap”

The article is followed by the story “Is Worm Soup Our Future” http://ms.about.com/od/newsresearch/a/worm_soup.htm

Hey, if it works, we will do it!  Desperation measures, to be sure, but who cares.  Only, read the fine print before you get too excited, because this is a possible treatment for only the relapsing-remitting form of multiple sclerosis – which Don does not have.  But I asked him today if he would give it a go if it’s possible and he nodded and said, “Anything!”

Transport

 O frabjus day!  The wheelchair taxi is back on the road!!  After six weeks of being out of commission and apparently sending to Melbourne for parts, and then receiving the wrong part, and so on.  I noticed that Don’s last visit home in the taxi was on 31 January, and here it is 12 March, a long time. 

So Don has been able to come home for the first time in six weeks.  I meant to take some photos (I am hopeless at remembering that I even own a camera, most of the time) but suffice it to say that he enjoyed being back in his own home, in his own familiar surroundings, watching his big easy-to-see TV screen.  And putting in his order for lunch (saveloys, of all things! – something we rarely had, but I guess it is something they never have at the nursing home either, so he thought it would be a bit of a treat – so I got in a couple of kranskys for him. Actually the meals they have there are pretty good, roast lamb every week, crumbed fish with fresh chips and salad every Friday – food he likes.)

But he got very tired, sitting up in that wheelchair for two hours because I am not able to “transfer” him any more to the easy chair, so he was well and truly ready for the taxi when it came.

But get this:  Because the taxi was not available, last week we had to cancel Don’s annual appointment with the specialist in Newcastle.  Oh, we had transport, all right, because the local doctor organised “patient transport” for him, ie an ambulance.  But the specialist then cancelled us out, because they will not see people who book “patient transport”!!  To my heated inquiries, I learned there are two reasons.  Firstly because the doctor does not see “stretcher cases”: But I protested that Don is not a stretcher case, he can be wheeled in a wheelchair, but the “patient transport”, being an ambulance, does not do it that way, he has to be on a stretcher like a regular ambulance patient.  Secondly, even if they had a wheelchair facility in the vehicle, the specialist still refuses to see anyone with “patient transport” because they are too unreliable (might have to be side-tracked by a car accident or people who are actually dying) and his schedule for the day might be completely thrown out.

So that appointment, booked last May, has been and gone.  If you read my previous blog entry “We Need More Information”, you will have some idea how much I was looking forward to speaking with the specialist and hopefully learning more about Don and what is happening and his prognosis, etc.

But, multiple sclerosis being what it is, probably not.