Saturday, July 3, 2010

What a diagnosis

My name is Eric Fiesley. I married Pam Austin in 1970 - I was 21 and she was just 20 and she turned out to be best wife and mother I could have ever wished for. We eventually moved from Leopold to Mildura where our two daughters, Sharon & Jeni were born (in 75 and 76 resp). We were all fit and healthy and Pam played Netball and did a lot of walking.
However in 1986, my dear Pam was having increasing difficulties with her 'water-works'. Her need to urinate became extremely frequent and yet she could only struggle to do a couple of drops each time. This 10-15 minute 'urgency' was happening day and night and was very exhausting for her.

Pam sought advice from her Gynaecologist, Dr Neil Fleming, and on the appointed day she parked the car near his driveway and walked toward his waiting room. Unbeknown to Pam, he had watched her walking up the drive and noticed what he called her 'spastic' walk. Why hadn't I or either of our two daughters ever noticed this? WHY? We were to find out soon enough...

Dr Fleming referred Pam to our Physician, Mr Barry Dowty and after much examination he concluded the she had, at worst, a malignant brain tumour, at best a benign brain tumour - or possibly something in between, Multiple Sclerosis. He referred Pam to a Specialist, Prof Rick Burns, at Flinders Medical Centre Adelaide, and it was there on Melbourne Cup Day 1986 that she was tested and found to be suffering from a non-remitting form of Multiple Sclerosis.

For some reason, I'll never forget that 'At Talaq' won the Cup that year - and did so while I anxiously wandered the hilly grasslands around the hospital while the staff inside waited for the Cup to be run prior to them giving Pam a Lumbar Puncture as part of that testing regime.

The type of MS was not only non-remitting, but it was attacking with a gentle inevitability - in other words, the rate of debility was slow and 'long-winded'. Indeed, Pam had been suffering probably for many years prior to the diagnosis and it had crept up on her so slowly, nobody noticed - that is until she walked up her Gynaecologist’s driveway.

Recently, I wrote an article for one of our local newspapers. The Editor of Mildura Weekly did a fantastic job of editing it, but even so the final printed article was still two and a bit tabloid newspaper pages. The article can be be found here which has Pam's story on pages 8, 9 and 10.

What follows is roughly what I sent him - as a suggested article. (You will notice that something like that which you have already read above is included in this story below, but please don't be put off.)

I sent (to Alan Erskine, Editor of Mildura Weekly newspaper)...

Living with MS – the story of one sufferer.
Resilience is Her Middle Name.
Have you seen this woman? Does this lady look familiar to you? Are you wondering where you think you may have seen her? Perhaps you’ve seen her zipping around in her electric wheelchair at Centro, alongside her husband Eric, or perhaps you’ve seen her with daughters Sharon and Jeni. Pam could often be seen out and about with any one of her carers who have also become her good friends over the years. Pam’s soft yet bubbly personality is infectious and has captured the hearts of those that have met her.

It is amazing what this strong woman named Pam has had to overcome over the years and sadly she faced even more hurdles in the recent months, of which she is still greatly affected by, yet remarkably she refuses to give in and just keeps on battling on. If you see her, be sure to wish her a HAPPY 60th BIRTHDAY! She may look frail, but don't let her wheelchair fool you, for she is the strongest woman we know. Let us tell you a bit about her…

Here is Pam (pictured above, proudly holding her first grandchild, Kira). She and her husband Eric moved to Mildura in 1974 and in those early days of Pam’s new life at Nicholls Point she played in a local netball club and thought nothing of walking regularly into town and back – all whilst Eric taught maths at Irymple Technical School.

When it came to the early 80’s, each school day 34yo Pam, (by this time living in Mildura City), would walk her two young girls to the nearby school, but by the time she returned home, although she was not puffed and still quite able to walk, she found that she was beginning to have great difficulty lifting her feet up the two steps to the front door. Once inside she would soon recover, but to her the feeling was quite ‘strange’.
Not too many months later, Pam began to notice another bothersome problem – she was developing progressively worsening continence problems. There were occasions when she would be up to the loo many, many times throughout the night producing only minimal success with each visit. Finally, she took herself to her gynaecologist to see if he could help. The good doctor noticed something before Pam had even entered his clinic – he had watched her walking up the driveway from the street where she had parked her car, and noticed her ‘spastic walk’ – as he called it. Strangely, neither her husband nor her close friends had ever noticed anything of the sort – what was happening to Pam had crept up slowly over the years and nobody realised.

Pam was referred to her Physician, who thoroughly examined her concluding that she had as a worst case, a malignant brain tumour; as a best case, a benign brain tumour; or possibly somewhere in between – Multiple Sclerosis. Pam was referred on to Flinders Medical Centre (Adelaide). Here Pam received many days of extensive and varied tests including a lumbar puncture that Eric remembers was on Melbourne Cup Day, 1986 (‘At Talaq’ won the Cup that year – another fact Eric reckons he’ll never forget.) The Neurology Professor explained the final diagnosis was that Pam had a non-remitting form of Multiple Sclerosis.

It was tough news for the whole family; Pam, Eric, little Sharon of age 11 and littler Jeni who was aged just 9, and it was a very subdued drive back home to Mildura. But Pam seemed to ‘take it on the chin’ with a certainty that there was someone out there worse off, and seemed to be content, even happy, regardless of her situation.

As it turned out, the MS-affected nerves were mainly in Pam’s mid-spinal region; everything below that being affected – legs, and bladder/bowel functions. Pam’s ability to speak would continue to be unaffected – at least until 2009, but what happened then was not MS related.
Pam’s urinary difficulties resulted in a bladder transection/resection operation by her Urologist, in order to destroy the errant MS-affected nerve signals to her bladder muscles, resulting in Pam next requiring catheterisation. For the first year or so, ‘self catheterisation’ was the appropriate method with Eric (who was by then teaching at TAFE) willingly coming home four hourly to help Pam adjust to the new situation, in the early weeks following that procedure.

The next bodily system to malfunction was the back passage region. Pam was becoming incontinent and once cried (as would many readers in the same situation) when she eventually had an ‘accident’, not quite ‘making it’ in time. Eric says this is the ONLY time Pam has ever complained about what was happening to her and that she well knows, at least by now, that none of this is her fault. “Given what has happened to her during these past 23 years, Pam has been and still is absolutely amazing”, he recently said. The loss of bowel control eventually resulted in Pam having a Colostomy operation which was carried out by our regular surgeon in the late 90’s. Many readers will acknowledge (either personally or by association) how brilliant are the modern systems for this ‘unspeakable’ topic (about which we unashamedly ‘speak’).

Around about that same time, Pam decided to hand in her driving licence as she felt her physical reactions were no longer good enough to be, or to feel, safe on the roads.

As Pam became less mobile, she put her mind on to things that she could still do. She resurrected a simple tapestry that she’d started many years earlier and that led on to this beauty…
She won a prize at the Mildura Show and got a mention in Sunraysia Daily together with this photo. The text written beneath the photo included, “Tapestry making has taken on new meaning for one Multiple Sclerosis sufferer. Pam of Mildura, started her first tapestry effort soon after she was married, but it wasn’t until 16 years later that it was completed.

Pam, who spent her early years on a small farm near Geelong before becoming suburbanised, would find far too many other things to do than complete her simple design, but when somewhat demobilised by Multiple Sclerosis in the early 1980s, (diagnosed 1986) she found the newly-acquired sedentary leisure an ideal excuse to return to her tapestry.
By the time it was hanging on the wall, boredom had set in, so her husband Eric, bought her a more challenging one. Only three months later, it too was finished. A friend suggested that Pam enter her tapestry in a show, “just for a giggle”. Encouraged by her husband, she eventually agreed to do so, but told herself not to expect to win anything. According to her husband, ”you should have seen her face light up when that same friend telephoned to say that Pam had won second prize”. (The year was 1988.)

In the early stages of mobility loss, walking aids were adopted, beginning with a simple walking-stick. Some years later a walking-frame was required and then a push-along wheelchair. That one wore out so another was ordered, and later, to join that – an electric wheelchair.

Pam was getting very well versed in who the funding suppliers were and for several years went out of her way to advise others similarly afflicted or otherwise. For example, Pam spent time with school children explaining the condition when it was brought into focus by the annual MS Read-a-Thons.

Here’s a picture of her with some children of St. Paul’s Primary School in May 1992. This photo was taken by Sunraysia Daily and was accompanied, in its newspaper, by text including, “STUDENTS at St. Pauls Primary School learnt what it was like to have Multiple Sclerosis on Wednesday. As part of their regular participation in the MS Read-a-Thon, Pam, who suffers from the disease, talked to the students about her affliction…Sister Nora said Pam’s visit was a good way to show the children that anyone could be struck down by the disease… “

Pam even guest-lectured for a number of weeks at TAFE as a volunteer, discussing with participants how her condition had progressed within her, and how she dealt with it – she told it all, withholding little if any of the personal details. Eric was there on one occasion (and was so proud). She explained how the help and funding systems operated and was generally very useful to them all. While on this topic, years later Pam was doing the same thing with interest groups in Merbein. Pam not only had the dreaded condition, she wanted (and still wants) folk to understand that MS was not just something to do with a Read-a-Thon.

Years rolled by; Eric had eventually ‘taken a package’ from TAFE at the end of 1996 to become Pam’s full-time carer. The accrued ‘Super’ eventually funded the wheelchair accessible Renault van – pictured here with ever-happy Pam.

Pam’s condition eventually started to sap her of energy, requiring her nowadays to take regular afternoon naps. But when she is awake, she is good for everyone around. Anybody who knows her loves her, in their own way.

2009 brought some serious difficulties. In March, an adenocarcinoma (a bowel cancer) had formed in the now-redundant part of Pam’s lower bowel. Removal of that required a BIG operation and although Pam was subsequently cleared of cancer, she had been left very much weakened by the procedure. This procedure would temporarily weaken anyone, but remember Pam was already weakening with MS – which seemed to more viciously attack whilst Pam was feeling low following any surgical procedure or other stressor. We had noticed this earlier with relatively minor operations – a gall bladder removal and a full hysterectomy. Pam regularly seemed to recover, but never quite to how she was. While she was recovering from this latest one though, she caught a cold. (!)

Pam had become too weak to effectively cough and Eric quickly called for an ambulance. Off to hospital she went. The date was 28th June, this year. The cold rapidly became pneumonia and while that was happening, the left-side of Pam’s mouth suddenly drooped – she was also having a stroke. A CT Scan revealed a bleed deep within Pam’s right brain hemisphere, and in case she needed surgery, she was air-ambulanced to St. Vincent’s, Melbourne. This photo is of Pam settled there soon after her arrival. Fortunately, the bleeding had stopped and in the main, Pam’s pneumonia occupied the hospital medical staff almost totally. Her lungs were full of congestion and she could not cough. The antibiotics were not working at all and on the evening of Thursday 2nd July, she very nearly died – but still she didn’t complain. (I'll never forget how I felt when the doctor took me aside and said "Go back to where you are staying in Melbourne Eric, and we'll phone you when to come back here. We'll keep Pam comfortable so that you can come and say goodbye".) Well I didn't go just then, I was in no condition to. Little did I know, some good news was on the way.

The “Last Chance” antibiotic, Vancomycin, was administered and almost straight away Pam opened her eyes and broadly smiled with the working part of her mouth. She was on the mend (yet again). This is how she was on the following morning, merely hours later – still smiling.

These photos are typical of how Pam looks each time she opens her eyes, happy and appearing totally at ease. She will smile and softly say “Thank you” to anyone who came to see her or help her. She would even say this to a nurse who was doing something as simple as giving Pam her tablets or putting a cannula into her hand. Nurses have commented that Pam certainly makes up for the lack of thanks exhibited elsewhere in the wards.

Pam is grateful to all who have helped her throughout her journey and the smallest gesture was and still is consistently recognised by this life-loving lady as you can see by the look in her eyes in these pictures.

Within a week Pam was returned to Mildura Base Hospital and within another few weeks, was allowed to be collected by Eric and return home. Her speech wasn’t affected by many years of MS, but within moments of the stroke, it significantly was – but at least she could still speak. Unfortunately, her ability to swallow correctly had been somewhat compromised and within yet another week, Pam aspirated some drinking water and before she knew what was going on, she was quickly returned to hospital with aspiration pneumonia. Three weeks of recovery was followed by three more weeks of rest at Mildura Nursing Centre, Ontario Ave. You could still see by the look in her eyes, that she loved the staff and what they did; she loved the Centre too but badly wanted to come home again.

On Monday, 7th of September – two days after Pam and Eric’s 39th wedding anniversary – Pam (always full of grace and charm), was sadly farewelled from Mildura Nursing Centre and once again gleefully returned home into the care of Eric, who (as he points out) is gratefully supported by many other organisations and persons in Mildura.

Now that you know a bit about Pams triumphs, trials and tribulations, please don’t be scared to say a simple “Hi” if you see her getting around in her electric ‘wheels’ once again.

However, right now she is ‘taking just one step at a time’ as this remarkable lady has always told her family that she couldn’t do it without their love and support, along with the help of her husband/carer Eric and the people mentioned above. Pam has endured so much over the past 23 years that even her doctors here and at St. Vincent’s were astounded by her. One local doctor indicated that the sequence and number of serious health issues that have bombarded her, particularly since March of this year have still not stopped her, and said that Pam is amazing! (However her family already knows this!)

Pam is a special woman and it’s not just we that hold this point of view…

Happy 60th birthday for Tuesday 29th of September '09, Pam!
Eric, Sharon & Neal, Jeni & George

...So that's very close to what I sent to the newspaper, and I hope it inspires you as it did (and still does) me. 


OK, well that was last year. The birthday had some surprises: Pam's sister Val and her husband Tony came up from Melbourne, daughter Sharon and her husband Neal, with our beautiful grand-children Kira and Erika came over from Adelaide (over not up, as one does from Melbourne!) and of course youngest daughter Jeni and her husband George from very nearby. Sadly, Pam's mum wasn't able to make the long ride with Val & Tony because of health reasons. Among other things, Pam got this... It's a rug, manufactured by Svetlana, a local sewing genius, with meaninful fabric family photos sewn in and being presented her to Pam by our two lovely daughters. At this time of writing (10 months after) - and especially because it's winter now, that rug gets regular daily use while Pam is sitting in the Lounge.

Talking about winter, it was just last winter (almost to the day) that Pam nearly died. When I sleep, I usually dream of Pam when she could walk - but that was so long ago. Yet I do dream of her. I even dream of experiences of her such as these...

While Pam wasn't particularly dressed for mountain climbing I'll admit, in those days (at Bulga Park) so long ago, there was nothing untoward as far as I could then see.

In the year since her 60th birthday and as a consequence of her stroke, Pam's ability to take food orally was diminished and it was such an effort for her to chew, her foods all needed to be liquefied. Even then, swallowing was tiring and the net effect was Pam gradually lost weight. Being completely unable to stand, regular weighing was impossible. When she exited hospital following the stroke, she was 47.8kg but 10 months later following a short stint in a respite centre (where she was again weighed) she was just 37kg. I panicked a bit - Pam had for a long time, resisted the very thought of a feeding tube - she interpreted that as a step closer to the grave. Our youngest daughter, Jeni, was very protective of Pam's feelings in this regard and so I took her with me to our GP to discuss the situation with him.

Well, Dr Bob Meyer didn't mince words. Upon hearing how Pam was daily struggling with her food, he had no hesitation in recommending a 'Stomach PEG' procedure for Pam. He predicted an increased life expectation and promised us that it would vastly increase her quality of life. Furthermore, as her weight and overall feeling of well-being improved, she'd have a better chance of coping with any winter ills.

I was delighted to hear this as I was already convinced something like this needed doing and I was extra pleased to see Jeni’s point of view swing right around. She and I returned to Pam and announce that the three of us (including Dr Bob) reckon it’s a real good idea and we went on to repeat the good doctor’s words to her. Pam was gracious enough to say “Oh well, let me think about it”.

The following day I inquired as to Pam’s thoughts re the stomach PEG (by the way, PEG is an acronym for Percutaneous Endoscopic Gastrostomy – OK?). Pam said, “Oh, I‘m slowly coming around to that idea, I suppose”, which was more than enough for me to immediately contact Dr Bob to get a referral to our surgeon, Mr Kevin Chambers, and have the procedure done ASAP. My reasoning was that ideally this would have better been done in the warmer weather giving more time for Pam to fatten up and be strong enough to face winter (remembering what happened last winter), and here it was in early June and already winter. To me, it was a matter of urgency!

On Tuesday, 15h June, the deed was done. Compared with other surgery she has had (bladder transection, hysterectomy, gall-bladder removal, adenocarcinoma – a cancer inside her redundant rectum – removal) this procedure was comparatively trivial and over the weeks since then, Pam has put some weight back on already and is now around 47kg and rising. Here's a picture of Pam, healthier than she has felt for a long time.


(There are many postings for this blog - please check the Archive for those not displayed here.)