We had our six-monthly visit to the neurologist yesterday.  He doesn’t pretend that he can offer Don any treatment, or any kind of hope really, but he monitors how Don is going, and always stresses that if anything changes or there is any sudden deterioration or anything that is worrying us, to get in touch at once.

As soon as we came into his office, he said with some surprise, “Don, you seem quite improved since your last visit!  I heard you talking to the receptionist and was aware how strong your voice was, compared to your last visit.  And you’re sitting up quite strongly in the wheelchair, whereas I remember last time you had to be supported by the head rest.”

He continued with his tests, which are in another room but seem to consist mainly of Tell me if this is sharp or blunt?  Is this hot or cold?  When I do this, tell me when the tingling stops.  And, Push hard against me with your feet, with your arms.

Then he had a bit of a conversation, clearly trying to assess the mental state, so when they came back into the little room where I was waiting, I helped by holding out the crossword I was doing and said to Don, “Five letters, Soviet labour camp” and without even hesitating Don said “gulag”.  (Yes, I was impressed too!)

The doctor was clearly rather bemused by all this.  He finally said, “Don, you do have primary progressive multiple sclerosis.  That means what it says, that it is a gradually progressive disease and the best we can hope for is to slow down the deterioration or hope, at best, that the condition will plateau for as long as possible.  But I have to say, you are showing clear signs of improvement in almost every area.  I hasten to add, the improvement is not huge, and there is no Lazarus turnaround, and basically your situation hasn’t changed” (I presume, meaning he still needs the nursing home).  “But there is obviously some re-myelination taking place.”

I’ve explained before that the condition of MS occurs due to the eating away of the myelin sheath around the nerves, and in fact the reason the symptoms are so different for various MS sufferers is that you can’t predict which nerves will be affected.  I said to the doctor, “I thought you told us once before that the myelin sheaths can’t regenerate.”

“Yes,” he said. “It was believed that was so.  We know so very little about multiple sclerosis, despite all the research that is going on.”  He gave us a smile and said, “I don’t want to see you for another year, unless something changes.  But whatever you’re doing at present, I suggest you keep doing it.”

Thank you, God.  And thank you LDN.

Marijuana and MS

Every now and then, somebody will ask if we have ever considered getting some marijuana for Don.  There are reports that it can help MS sufferers.  We have in fact discussed the possibility — or rather, I have, because Don is strongly against the idea.

Last time it was raised, I said, “If we did want to do it, I have absolutely no idea how I would go about getting some, who would I ask? where would I go to get it?” — a comment that was met with incredulity because apparently anybody can get marijuana at the drop of a hat.  Yes, even staid elderly-looking people like myself.  Although I still don’t know how or where.

But what is its benefit? I’m not clear about what exactly it does to help MS sufferers.  Except as a pain reliever, but Don experiences very little pain with his MS; pain has never been an issue with the disease for him.  Articles about it seem to focus more on how you go about getting it, and why it should be legalised for medical use, and whether there is significant lung damage from smoking it, etc, than describing what are the specific reasons for its use.

http://newsfuzion.com/2011/03/29/dr-oz-covers-the-legalized-medical-marijuana-controversy/

The only “alternative” treatment Don has tried is LDN (Low Dose Naltrexone), and I’ve said before how pleased I am with its effects.  Only, one side-effect of the LDN is nausea and stomach-ache, and Don has had that quite badly over the past week.  To the extent that maybe he needs a puff of pot after all, just to relieve the pain and discomfort.  So what is my next step?  Sidle up to a likely-looking character in a pub? Speak out of the corner of my mouth to a shady-looking loner?

Nah.  He’ll just have to put up with it, I’m afraid.

I was away for a week (my beach holiday), and for Don it was clearly a very long week.  I phoned him almost every day, and every conversation I had would begin and end with him asking when I would be back.  Naturally this made me feel bad, and I had to steel myself not to feel guilty about being away.  Also, friends and family kept emphasising to me that I should not feel guilty, that it is important for me to take a break and go away sometimes, and to just enjoy myself.  And I really did have a fantastic week at the beach.

On the other hand, I could have done more to make it a better week for Don.  I told the staff I would be away, and I also wrote out a sign and put it on the notice board in his room.  They told me that they got him up two or three times and took him to the dining room for his meal, but he only stayed for a short time before asking to be taken back to his room and go back to bed.  Well I don’t really blame him.  It really is very lonely in the nursing home.  There’s no companionship in the dining room, the only people you can sensibly talk to are the staff or people visiting.  The residents are either deaf or not able to hold a coherent conversation.  I remember my mum in the nursing home, and being there for meals was pretty dreadful, it was nothing short of funereal — and Mum was the most sociable, engaging person you would ever wish to meet.

What more could I have done?  Well, I could have contacted friends and asked them to visit Don, check which day they would be available so that there would be somebody there every day.  It need only be a brief visit – perhaps to read him the paper (his glaucoma is bad, but he loves to hear the letters to the editor), or talk about what is in the news, or tell him what is going on in their life.  Any of that would really give him a lift, and also give him something for his brain to think about instead of staring at the TV all day.  I didn’t even tell the local Minister I would be away – he would have been happy to visit.

I promised Don faithfully that I would phone him every day.  Something else I feel bad about, because the second day I was away, I didn’t think about him all day.  My own husband, and I didn’t even think about him once, and it was only when I was going to bed that I remembered I hadn’t phoned.  When I got home at the end of the week, he was saying how long I had been away, so I said rather defensively, I phoned you every day!  and he answered, No, not every day.  So when we think sometimes that the MS is making him a bit woolly-minded, trust me, he does keep track of the important things!

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.

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!”

Look at the date of this posting and you will see it is 22 January. I’ll bet you can’t think of anything significant that happened on that date.  And I don’t just mean those momentous events that “I will always remember where I was when … Princess Diana died … President Kennedy was assassinated … Harold Holt disappeared into the sea … the 11 September attacks … etc”.  I mean normal, ordinary memorable things.  Pretty much nothing, I’m afraid.

Famous birthdays of 22 January?  I looked in vain for Picasso, Nelson Mandela, or at the very least Bette Midler – but no. Famous birthdays are limited to John Hurt (actor, think Alien, Midnight Express) and Michael Hutchence (think INXS).

Famous deaths? Well LBJ the ex-President, and also Judy Garland.  Both famous I suppose.  In their way.

Special national days or holidays?  Only in Ukraine, I’m afraid.  They have a holiday for “Ukrainian Day” on 22 January.

But I am telling you that it is in fact a very special day indeed.  It is the  WEDDING ANNIVERSARY OF DON AND BARB DUFTY – which took place a lifetime ago – a couple of lifetimes, depending on your longevity – in 1966.

Celebrating an anniversary in style and throwing a wild party becomes rather difficult when you are so confined by MS that you can’t get up out of your chair. So we decided to “stay in” (just for a change).  The staff at Bayside Nursing Home made up a card and everyone signed it for us and wrote rather touching comments, and I took our wedding album and a couple of other photograph albums from the early days, so we could look at those together.  People were very polite and pretended they could still recognise us in those photos – looking so young! – and we found it quite easy to believe that we haven’t changed one bit.

Cheers, and next time 22 January rolls around, blow up a couple of balloons for us!

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.

Birthday Cards

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.

Healing Laughter

Don has been moved into another ward.  He was being driven demented by a door that banged constantly (the Treatment Room, whatever that is, but is obviously used all the time, and all night long).  When I located him in his new room, he glared and said, “They moved me because they didn’t want headlines NURSES MURDERED DUE TO BANGING DOOR  –  that’s a headline that would grab attention.”

Glen, a visitor at the next bed, looked up and said, “Oh I’ve heard better headlines than that:  What about the one that said MINERS REFUSE TO WORK AFTER DEATH.”  Don laughed, and to my surprise, so did a quiet girl who had been visiting her grandfather for long periods every day.  She chimed in on the conversation to make her contribution: “What about NEW STUDY OF OBESITY LOOKS FOR LARGER TEST GROUP, and the other one I remember is IRAQI HEAD SEEKS ARMS.”

Don threw his head back and laughed until he slapped the bedspread.  Eventually he subsided, and after a while he asked me to read the paper to him.

I read the headlines of the Sydney Morning Herald and gave the gist of stories on the front page, then turned, as I always do, to the quirky bits on the back page.  Amazingly, there was a a par on crazy headlines.  I turned to the girl who had said “Iraqi Head Seeks Arms”, and said, “Here’s a follow up one for you:  HEADLESS BODY FOUND IN TOPLESS BAR”.  Everybody roared, and the girl laughed until tears rolled down her face.

There is a tea room for visitors, and later I found the girl there when I went to make a cup of tea.  She smiled at me and said, “I can’t remember when was the last time I laughed.  I live with my grandad, and he’s dying of lung cancer.  I haven’t laughed in so long, I feel better right now than I’ve felt in literally weeks.”

Laughter the healing medicine, indeed.