Needing Time

One of the things that occurred to me too late as I watch Pam's gradual deterioration was that her inability to turn her head made it impossible for her to read the time on the clock-radio that I have beside my bed (which is next to hers) during the night.  This fact has now been exacerbated by the need for her head and torso to be elevated while she partakes her overnight PEG feed - this would make it impossible for her to see the clock-radio, even if she wasn't disabled.

Pam would derive benefit from our lounge room chiming mantle clock, that can easily be heard from the bedroom, chiming something on the passing of each quarter hour. It, of course, also struck the time-value upon the hour.

Sadly this clock, affectionately known as Clarie the Clock, has been in my family since I was 9yo (1958) and was starting to get a little cantankerous in recent years. Its latest period of repair was from early October until just yesterday (Saturday). Here it is, almost as I type...

Here's the insides, as they recently were in a vice at the jewellers. There was a need to wait and see what the exact nature of Clarie's cantankerousness indeed was, before it could be rectified by the friendly magicians who work there...

The penny dropped for me when Pam eventually complained during that umpteenth period of Clarie being crook, that she had no way of knowing what the time was if/when she woke up during the night - although she declared she had worked out how to estimate it from the food delivery display on the PEG-feed pump. The pump is activated at 9:30pm and delivers 48ml/hr, so when she does the maths in her head she can convert a reading of, say, 170ml of food delivered to it being a time of around 1am; she figures 170 divided by 48 roughly equals 3.5 hrs since 9:30pm - so it must be a smidgen past 1:00am. One thing is for sure, this degree of brain torturing helps her get back to sleep!
(I'm so glad that Pam still has her full mental facilities - it's so depressing, on the other hand, to know that her physical facilities have almost been reduced to diddly-squat!)

As you saw in the above picture, Clarie is now back in the lounge room doing its thing, but I've already bought for Pam a projection clock-radio as a Christmas prezzie. This will project the time onto the bedroom ceiling so that we both can see the time without even trying, but I'll still require Clarie to keep going nevertheless, until I drop! (And I mean it!  :)  )

A Significant (for me) Wheelchair Mod

Here we are, last day of November 2012. Having gotten over the traumas of the Catalyst program of the last posting and subsequently having our Physician, Dr Terry Cook give us the reality of what Primary Progressive MS actually is and how it is free of any cures, understanding or treatment.  Nevertheless, we’re both glad we asked.

The latest development is Pam’s disability finally impinging on her control of her wheelchair.  She gets into strife at the supermarket, pirouetting in circles without the physical control to stop herself.  These symptoms had been happening on and off for some time and an ACU (Attendant Control Unit) was deemed necessary to be fitted to her chair, which was funded, sourced and eventually installed just this week. It looks like this and is mounted behind the right rear of the seat. (You can make out the right arm rest):

The joystick is obvious, the switch next to it passes control between either of the two controllers and on the left of the box is a rotary chair speed controller - fully anticlockwise is slowest - clockwise is flat out! However, this knob does not effect the turning speed or turning acceleration. These are set with the software to which I am not privy.

When Country Care, the company that fitted it, originally brought the chair back here with the ACU fitted, it behaved very poorly – very violently getting out of control when operated from the new unit.  Country Care knew what was wrong and quickly did the software-determined modifications to attenuate both the rotational velocity and acceleration, making a HUGE difference to the errant behaviour.  However, I thought it could be better still.

Without going into too many details, I was strongly of the opinion that pushing the joystick (say) to the right, would result in the whole thing (meaning the rear end of the wheelchair) would also follow to the right. Ah, but it went to the left!!!

I was astonished and reckoned that THAT was an error. I went to some trouble to justify my point of view as well. However, today I was quickly proved wrong and, as I type this, still have a little egg left on my face. I’ll meet with Ron of Country Care tomorrow lunchtime at Mildura Workers to see if the last little bit of egg can be allowed to disappear.

What might seem perfectly reasonable to me in this case is, evidently from long experience of millions, is indeed better satisfied by the reverse position, so it seems. I may eventually see why...

 

A Tempting TV Broadcast - Too tempting by far!

On ABC1 TV 23/08/12 at 8pm, a program called “Catalyst” was screened, of which the first 14 minutes suggested a possible cure (or at least, significant improvement) for Multiple Sclerosis. As Pam is now totally physically disabled because of Primary Progressive MS (PPMS), diagnosed in 1986, we both took great interest in what the program had to say.

The doctors named in the program were Dr David Wheldon and Dr Paul Thibault. They claim that MS is caused by an infection by Chlamydia Pneumoniae and it could be successfully treated by an extended term of three concurrently delivered antibiotics– a term well in excess of twelve months.

I soon after asked our GP, Dr Meyer if he could prescribe these for Pam – as Pam is now so weakened by MS that I fear she will not survive her next inevitable attack of the common cold. (The last time she caught a cold was in 2009 when it developed into pneumonia and a brain haemorrhage resulting in a stroke. As you may have read, Pam, who was much stronger than she is now, very nearly died back then; but was saved by an emergency treatment of the antibiotic Vancomycin.)

Reasoning that even if the treatment prescribed by Dr Wheldon and Co merely improved Pam’s strength against her next attack of a cold, at least then she’d have a better chance of surviving it.
 

Dr Meyer explained that he was unable to prescribe anything but ‘normal periods of treatments’ of antibiotics, which certainly didn’t extend to the time-period suggested on the video, but at least he encouraged me to see what I could find on the internet in relation to Dr Wheldon. Dr Meyer also gave me a referral to a local physician, Dr Terry Cook.

Upon searching the internet I quickly found two documents written by Dr Wheldon: The first was a highly detailed “Empirical antibacterial treatment of infection with Chlamydophila pneumoniae in Multiple Sclerosis” and the second was a detailed rebuttal of another doctor’s argument which claimed that “Chlamydophila (Chlamydia) pneumoniae was unlikely to have any input into Multiple Sclerosis”.

I printed off both of the above documents and copied the 14 minute segment of the Catalyst segment onto a DVD, all of which I submitted to the physician's receptionist for his eventual perusal should he so decide to familiarise himself (when he returns from a seminar in Melbourne). I explained in a covering letter that the video program goes to some trouble to explain that the described treatment has not yet had any clinical trials, nor is it ever likely to ever get any because the antibiotics involved are all ‘old’ and out of patent, and therefore there is no money to be made to justify/fund any such trial. Dr Wheldon (on the video) said himself that he’d be a widower by now if he’d waited for a clinical trial prior to his (successful) treatment of his own MS-afflicted wife.

In that letter I left for Dr Cook I also noted that because the treatment hasn’t (yet) been clinically trialled, it is alleged that most medicos either avoid or actively reject it. I wrote "Pam and I are admittedly ‘grabbing at straws’ – we urgently seek anything that will possibly strengthen her to give her a better chance to cope with the inevitable. Anything better towards, say, a cure, would be an unexpected bonus".

Pam's and my appointment with Dr Cook is not until mid-October (and I'm writing this on 10th September) but since making that appointment I'm having serious second thoughts about Dr Wheldon's treatment. Just today we received a copy of 'Intouch Magazine' and in it was a feature about the different forms of MS. Pam has PPMS and according to this article, dated Spring 2012, there are no medications at all which are affective with that. Dr Wheldon is a poet and a novelist as well as a doctor - that bothers me somewhat... Is his supposed treatment of MS also a fiction - at least, for Pam?

Once again I contacted Dr Cook's receptionist and explained my revelations, but she encouraged me to nevertheless continue with the appointment, regardless - and so I shall; but with a VERY different point-of-view to what I originally had in mind.

Good news happens - sometimes

It’s been a long time since my last addition to this story of my darling wifey.  I suppose that’s because peace reigns at the moment as Pam is going really well.

As Pam reached the weight agreed between her dietician and me and began to exceed it, I experimented with PEG-feed delivered quantities and also timed the delivery so as to suit my morning getting-up habits.

Pam was struggling to consume 3 brix of PEG-feed and that amount was also raising her weight without apparent bound, so I reduced it.  I discovered that the feed pump was much more reliable than I first thought at delivering a constant rate, although the indicated rate is quite wrong.  Each brik contains 237ml of food and Pam’s quantity was reduced from 3 brix to about 2.6 brix. 

Now a quick calculation gives 2.6 x 237ml = 616.2ml, however this amount reads on the pump display as just 460 (ml).  But what’s in a number name?  That amount turns out to be the magic feed quantity to keep Pam’s weight to around 60.8kg – 61.4kg (clothing dependent) and very satisfying to my understanding of the agreement with the dietician.

Further experimentation showed that if I slowed the delivery rate to 44ml/hr (44 pump mls) and commenced the nightly PEG feed at 9:30pm, the 460ml (indicated) amount  would be reached 2 – 3 minutes before 8am, which is when I normally arise to start my day.  The pump is so consistent and reliable that that turn-off time is easy to replicate on a daily basis.  Pam gets 460 indicated ml, (616ml in reality) each day and the world can keep turning. 

(Check the maths: 10.5hrs at 44ml/hr = 462ml but it doesn’t get to go for quite that long)

Above is a "Happy Snap" just now taken to prove Pam's a happy girl - in spite of her 'desparately' needing a haircut.

Here we are next morning, it's Saturday and Pam has just had her shower and her hair washed and she's in the lounge ready to face the day.

She is my reason for living!

A Curious Development in PEG-feeding / Use it or Lose it

Pam's Mildura Base Hospital dietitian had been very keen, as were we all, for Pam to put on weight. It wasn't too very long ago when Pam was very underweight - 30-something kilograms was measured at the hospital as I recall, but since I started daily weighing her, the lowest figure I have on record is 44.5kg - and that was in August 2010.

The dietitian was keen to get Pam up to 65kg, but over time I noticed that most of the weight increase was focused on her abdomen and not her legs or arms, so I got a mutual agreement with her (the hospital dietitian) that a more appropriate target weight for Pam would be just 60kg.

Pam was consuming three brix of Novasource 2.0 liquid food in a continuous overnight PEG-feed, commencing at 9pm and usually finishing around 7:30am and her weight steadily improved and eventually reached 60kg in early January - and continued to increase until Pam evidently decided to do something about it.

In the past few weeks, Pam started to politely announce that she'd ‘had enough’ when there was still half a brik or so remaining in the pump's supply-bag. Prior to this, Pam was daily struggling to accept the full three brix of feed and was keen to comply with the rules in order to gain weight, but in hindsight that may well have been the cause of the regurgitations mentioned below. Anyway, Pam had apparently personally and privately decided that she had no further need to put up with the discomfort anymore and had begun to regularly report the first moment of this feeding displeasure.

Sadly, I’m not Superman and me getting woken up at 5:30am or earlier, being requested to turn off the feed-pump (and disconnect it, post-flush the PEG, discard the bag kit and remaining food etc and then go back to bed to 'sleep'), quickly became onerous. So I just as quickly rescheduled the PEG-feed start time to 10:30pm (or later) instead of 9pm, and the Nexium stomach-settling med just 10 minutes prior (exactly, more or less), not 10 to 20 minutes as was previously done. At least now I can sleep until 7am or so before Pam feels the need to make her pump-switching-off request.

Curiously, for the past fortnight, Pam’s weight has settled to a steady 61kg and just this morning I rang the dietitian and explained all this to her – and she is more than happy with what’s happened, by the sound of it.

Peace at last, I hear you ask?    Nah, sorry…

A couple of days ago, Pam yawned and subsequently reported that she had hurt her jaw in the process and last night, she twice asked for Panadine Forte to help her cope with the pain. For the first such dose at midnight, I remembered to put the feed-pump on ‘hold’ while I administered the tranquiliser, but not so, unfortunately, for the 4:30am request. Although I only took a moment to deliver the pain-soother, a couple of millilitres of PEG food had pumped into the cap which I’d temporarily placed over the tube nozzle. That was more than enough to make the nozzle slippery and it came away from the PEG tube as a consequence within minutes of it being ‘tightly’ reconnected thereafter.

The mess that followed has been much worse in the past. Pam, of course, had not had any feed since 4:30ish because of the disconnection and so she slept peacefully until my alarm radio sounded at 7:30am. She then arose from her deep sleep, recognised the digital display of 541ml of food that had been pump-delivered (in total) throughout the night and had the grace to announce, perplexedly I presume, ‘Darling, I’ve had enough!’ Of course she had – so had I. But today is sheet-changing day anyway; besides, the tea-towel I had folded and placed under her PEG connection point had caught most of the mess, so there was minimal impact on my day, as far as I could tell.

I’m left wondering if Pam’s jaw problem needs a medical opinion.  I’ll let you know.

(5 hours later)

Well it didn't take long to find out...

Pam's jaw pain continued to worsen and eventually (at 5pm this afternoon) she finally consented to me taking her to hospital to find out the cause of her pain.

I won’t go into what’s involved in getting Pam from her bed to the Outpatients/Emergency Dept. at Mildura Base Hospital, but within 40 minutes we were there and it was 9:45pm by the time we were settled back home; but we were thankfully wiser by the knowledge that the ‘jaw’ problem (was it broken or dislocated) was in fact Parotiditis – inflammation of the Parotid gland which is one of the salivary glands. The inflammation is apparently caused or exacerbated by blockage of the gland through lack of use.

Here's my beautiful Pammy back home from hossy, butterly uggered and enjoying the Nexium-aided part of her overnight PEG feed.  The time is 11:45pm.

Parotiditis is a direct consequence of Pam no longer being able to take anything, food or liquid, orally. It just has to be the classic "If you don't use it, you'll lose it" – and that opens a BIG bag of worms. The problem can be temporarily relieved, evidently, with antibiotics but if Pam is to overcome it permanently, oral intake of some sort is going to be necessary. But these days, anything untoward getting involved with Pam’s swallowing process runs a good chance of getting into her lungs and finishing up as aspiration pneumonia. Pam and I both definitely don’t want that!

This sounds like real fun coming up.  I’ll wait and see - and let you know, no doubt.

Continuing frustration for my very brave Pammy

It's now mid January 2012 and I felt it was time to report on my poor wife's frequent torments.  (I don't think I'd wish MS on my worst enemy - if I had one.  MS is simply horrible!)

As was reported earlier under the heading 'Applied Love v/s Applied Cruelty', Pam continues to be bothered by random feelings of nausea, all too frequently developing as a regurgitation into her mouth and subsequent aspiration - potentially all the way into her lungs. There, it would quickly result in aspiration pneumonia which, as you may have already read below, is now well known to Pam

Since the last posting, Pam has aspirated her stomach contents on two more occasions - including one just yesterday.  I looked through my diary to see if I'd written the dates when Pam got crook enough to be hospitalised, but that wasn't a happening thing - I'd been a bit slack; so I went over to the hospital to ask.

I should add at this point how impressed Pam & I are with the attitudes, help and care regularly demonstrated by the doctors, nursing staff, administration and general staff, given the trying conditions they have to work under in the hopelessly under-designed facility; it is without exception that their attitudes are simply amazing.

Well, none of the staff took pleasure in telling me that these days, information about other people's hospitalisation is forbidden due to privacy laws - even to loving husbands. (It's funny, but I anticipated that very response as I spoke.) It was OK though I thought - I have Pam's medical and financial powers of attorney and I remember giving copies of those to MBH months ago, so that'll give me the right to be told.  Ah, but they couldn't find them as it turned out; so I was almost back to square one.

However, Chris from Hospital Information Services said I could email a copy of Pam's medical P of A if that was easier and he would then be able to tell me the dates. I did that deed just before I took the picture below.

Just to prove a point, here's a picture of my brave lady taken only a few moments ago.  Who'd have thought just yesterday, she was troubled enough to be ambulanced to Mildura Base Hospital's Emergency Dept?

Here it is now Thursday 19th and I've just received Chris's reply. He says…

Inpatient

8/11/11 – 9/11/11

ED Presentation

12/12/11 – 12/12/11
17/01/12 – 17/01/12

… which is exactly what I wanted to know.

The November overnight admission prompted the previous posting and that was for Pam's PEG tube replacement but the next two entries (ED Presentations) were identical to each other insofar as that was when Pam regurgitated stomach contents and consequently had breathing difficulties.  She was coughing feebly (and ineffectually) and had a gurgly chest.  In each case I monitored her temperature, but that was all I could do.  On each occasion, Pam didn’t seem to be getting any better with time and if she had aspirated into her lungs, all that my thermometer could eventually tell me was that she had (once again) developed aspiration pneumonia. 

Each time, I was between a rock and a hard place.  Pam reckoned she was OK and didn’t want to go to hospital.  I on the other hand, didn’t want to risk Pam getting pneumonia.  That eventuality would take weeks to get over – but that’s the time I reckon (by experience) when her MS will attack most viciously and mercilessly. In fact it was a safe bet that Pam wouldn’t quite ‘get over it’.  She never does – her MS sees to that.

No, I was over the moon each time the X-rays confirmed Pam's aspirations had got no further than her trachea (wind pipe). The staff even congratulated me for dialling 000 for an ambulance, because they agreed it was far better to be safe than sorry.

...but when I look at those dates - September, October, (November), December, January.  This is very bothersome - what has February got in store I wonder?