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’ve been reading some interesting comments on the blogs of people with MS, and am intrigued to find that MS seems to prevent dreaming!  So many of them say that they used to have frequent vivid dreams but since their diagnosis, or else as the MS developed, the dreaming became less and less, and most now say they don’t ever dream.  Unless they are on particular sorts of medication, when the dreams do return.  One blogger said that when she went onto a course of Low Dose Naltrexone (LDN) for several months, “…my dreams were psychedelic epic tales of suspense and surrealism. Vivid dreams are a common side effect of LDN – none of them were too alarming, just puzzling, and always very colorful.”

Don is on LDN, and has been for two years now.  I’ll ask him if he dreams a lot, but I think I already know that he does, because the dreams sometimes become confused with reality on waking, and when I go to visit he will occasionally be convinced that strange and worrying things have been happening and we both have to work out that it was a dream.

I’m still convinced of the benefits of LDN, by the way.  I know that it is “unconventional” or alternative medicine, no clinical trials as yet and all the rest of it, but given the rapid rate of Don’s deterioration before he started on it, and the way he has been able to emerge from what he used to call “the fog” to be so much more himself again, I am just grateful that somebody put us onto it. Costs a fortune of course – no PBS (Pharmaceutical Benefits Scheme) for unconventional therapies – but well worth it.  Yes, I know that MS is completely unpredictable and he might have been going to plateau or improve at that point anyway, but that would be too much of a coincidence.

Benedictions

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

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

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

Fast forward to his mother’s funeral, when he had been on low dose naltrexone (LDN) for six months.  No other changes in medication or treatment, except for the LDN.
 
“I’ll do the benediction at the end,” he announced. “There’s a special benediction that I always do at funerals, and I’d like to say it for Mum.”

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

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

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

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

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.
 

I’ve mentioned the use of Low Dose Naltrexone (LDN) as a treatment for multiple sclerosis, a couple of times in this blog.  It’s new, it’s still experimental and there is no clinical evidence, but there are lots of anecdotal reports from MS sufferers who used it and found improvements ranging from slight, to what some of them term miraculous.

Reason I haven’t been saying much about what effect LDN is having on Don, is because I am all too well aware of the placebo effect. 

Placebo effect means that if you give a person any treatment – any treatment whatsoever – for an illness or condition, then there will probably be an improvement regardless of what the treatment is.  Mind over matter, sort of thing.  The hope and optimism, the belief that there will be improvement – it leads to an actual improvement.  Which is the reason, of course, that when new treatments are being tested, some subjects are always given a placebo instead of the new treatment (without being told), so that researchers can measure what has been caused by the new treatment rather than “beneficial effects caused by the subject’s expectations”, which is the definition of the placebo effect.

Having said all that, it is clear that Don has improved quite a lot mentally.  I know that I wasn’t admitting how bad he was getting, putting a good spin on things and would just say that he was “a bit spaced out” or “sleepy”.  But the truth is that it was getting quite hard to hold a conversation because he would either drift off to sleep or get  what he called “clouded in his mind” and lose the thread of even the most straightforward things.  Well, he has improved so much that I am trying to recall just how bad he was on a bad day.  He listens to conversations with interest and alertness and often joins in, laughs at jokes and wants them re-told to others, chiacks the nursing staff  and sometimes remembers their names, gives sensible advice about such things as whether we should think about getting a new car.  Not all of that every day, and sometimes he is subdued and not terribly responsive, but still a complete turnaround from the zombie-like state he was getting into over the previous months.

I and the family are not the only ones to notice a marked improvement in Don.  Friends who visit occasionally or often, the nursing staff, and even ancillary staff such as the laundry workers who don’t have a lot of interaction with residents, have commented on how remarkably better he is.  Friends say that he is “more like himself now”, those who didn’t know him before are saying that he is a different person.

Only disappointment is that his mobility still has not improved, ie he still can’t walk or stand or sit himself up.  But I also realise that he is never given an opportunity to do any of those things to check it out, or to practise.  They use a lifter to get him in and out of bed, and staff are not going to abandon the lifter and risk hurting themselves on the chance that he might have more strength than before.  So I suspect that he might have improved marginally, but not enough to get him less dependent.

Don has been on LDN for three weeks now, and is there any improvement?  Well, hard to say, really.

We are of course desperately hoping that it will improve his mobility, but he’s been kept in bed most of the time due to pressure sores, and when he does get up it is with the aid of a lifting machine, so we never get a chance to see if there is any improvement.  My guess is that there is not.  But once the wheelchair taxi is back on the road (two weeks in dock so far) and I can get him home for a visit again, then I will check it out for myself.

But the nursing staff and I all think he has improved mentally.  No more complaints of “my mind is going foggy” or “I feel clouded in my mind” and drifting off blankly in the middle of a conversation.  Wants me to read long opinion pieces from the paper, the church magazine, and so on.

But the LDN seems to make him very drowsy (and I think I did read somewhere that this is a common side-effect) so sometimes it’s hard to know if he is still awake. I was reading to him yesterday a complicated political piece about all the infighting in the Coalition, but his eyes were shut and he was breathing deeply so I stopped reading aloud – it’s quicker to skim ahead and just read it for myself – but he opened his eyes and said, “Why did you stop reading? This is fascinating!”

And on Sunday morning I could swear he was sound asleep when we were watching the memorial service to the bushfire victims.  But after the Prime Minister finished speaking, Don said, still without opening his eyes, “Brilliant speech by Rudd.  Said it all.”

Sleepy he might be, and bed-ridden, but he is still in there.

                                                                        

Some time ago I mentioned the possibility of trying Low Dose Naltrexone (LDN). We didn’t go ahead with that after all – too much else happening and we were advised against trialling a new drug on top of everything else.  But now I am to see the doctor and give it a go after all.

After I mentioned LDN in my previous blog, here are some of the comments I got back:

Helena: My cousin in Poland started LDN about 2 months ago and his health has improved a lot.
He has had MS for 10 years, recently he was confined to a wheelchair but now he is starting to walk again and his speech is improving. Doctors are sceptical about this drug but I say , do what you think is right for you. I had to order the medicine for him from Canada. He believes it is a miracle drug.

Michael: “My stepfather has Relapsing/Remitting, and for five years did everything but LDN, and progressed down hill fast. He’s been on LDN for five years, and has not progressed any farther.”

Joseph:I began taking the LDN expecting nothing from it. I took it the way I took vitamins. You “hope” maybe it might help in some unknown way. I didn’t research the question because of the casual way my doctor had spoken about it.  In July, 3 months later, ALL of my symptoms disappeared. LDN was the only drug I had been taking…  It was only then that I started to do research and found out what can only be found out if you already know the acronym “LDN”.  My book, “Google LDN!” should be published in a few months. In the meantime please visit my site for lots of info and links.  www.gooogleldn.com   “

Multiple sclerosis seems to be everywhere.  They have a front-page news-making “Sydney to the Gong” bike ride every year as a fundraiser, schools run the MS-Readathon so all the school kids are aware of MS, high profile people have it, there are magazines, articles and news stories galore.  And always there is a new story about an imminent cure – or a supposed cure.

So why am I frustrated at having so little information? Real information, I mean – not just good news stories such as “she has been battling MS for years and here is what she still achieves”.  Or that high doses of caffeine in mice can halt and even reverse the effects.

I need to know why it is that all the articles tell you that MS does not significantly alter your lifespan, yet there are innumerable examples of people who died of MS.

I need to know why lots of people have it with only very slow and gradual deterioration over 25 or 35 years – and I am talking about the progressive form now, not necessarily the relapsing-remitting which I know works differently – and yet my Don is in a nursing home unable to sit himself up or even turn himself over in the bed, whereas three years ago when we got the diagnosis we travelled to Sydney by train, took a bus along Parramatta Road, and walked the two blocks to Royal Prince Alfred Hospital to see the specialist, the only aid for Don being a walking stick and the only after-effect being extra fatigue the next day. In only three years!  Why is it that the disease is galloping in his body?  Is it our lifestyle? Diet? Some pre-existing condition that pre-disposes his system to a more rapid onset than others?  Is there absolutely nothing known whatsoever?

I need to know why it is that when there is a new treatment that is still in its early experimental stage, we are not being urged to act as guinea pigs and give it a go.  Because, God knows, we have absolutely nothing to lose.

Such as the new LDN treatment, which I mentioned in an earlier blog, and to my surprise I’ve had a number of quite positive responses to that – all of them telling me of the marked improvement once the drug was started.  Well, the doctor was dubious but said if we were really keen he would give us a prescription – so we are going to try it. Since writing that blog and getting that somewhat tentative agreement from the doctor, our world has collapsed in other ways so we have not pursued it, but I am now determined to do so.

Because, despite the assurances that MS does not affect one’s longevity, I am beginning to think it is a life-and-death matter after all.

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.