Part 2. These boots are made for walking

Sorry about the long and humourless first blog!  For those of you who know me, you’ll know humour is at the centre of my being.  And because I’m a girl, so are boots and shoes, though not necessarily in the way you think!

From almost the beginning of my treatment by Wexford/Waterford hospitals I had to wear what people might call “moon boots”.  These are usually given to people with broken bones and in the beginning I had just one, which enabled me to continue to wear one at least of my own shoes.  My own footwear is most often red in colour and not particularly “ladylike”.  My favourites of last year though were a pair of bright blue racing driver suede boots which I bought from John Wolsey at Ballymena Raceway in Northern Ireland – unfortunately at the time he had no red in stock!

With the aid of the initial boot and crutches I still got around everywhere, walks with Neil and Frank the Dog, even on our beach.  The beach was a weird experience with crutches – not to mention slow…

Life went on fairly as normal with just my left foot and leg affected until around the end of April when it became extremely weak, and my right foot followed the left in weakening and developing “foot drop” too.  After the week in Waterford hospital in May I was “awarded” my second “moon boot”.  The initial singular boot (worn in cold months of the year) had been open-toed; the new pair were big, heavy and enclosed – perfect for wearing through one of the hottest summers in a few years!   And they only came in black, though I did seriously consider spraying them red.

So, two boots, and crutches, nothing held me back as I could now power-walk around the local supermarket and Ballymena Raceway once again for the final round of their 2013 National Hot Rod series in June.  Even then I was still wistfully looking in my wardrobe at the shoes and boots I still fully expected to wear again “when I got better”. 

In July we made our annual trip to Ipswich in England for the National Hot Rod Championship of the World, and stopped off on the A12 for tea in Chelmsford.  Right by the tea shop was a second-hand wheelchair place and I thought “Bingo!”  One of those’ll be even faster, and I can behave like Miss Daisy!  So £90 lighter, we headed for Ipswich Raceway and Neil and myself did a lap of the track in the wheelchair.  Well, Neil was pushing…  I’m not sure we’d have qualified for any major competition in 2013, but with all the practice that we’ve had since then, beware world champion John Christie:  we’re coming to get you in 2014!

Around the beginning of October I was told by my new neurological consultant not to wear the moon boots any more as they’re not recommended for motor neuron patients.  I asked what I could use instead to get around and to date I’ve not had an answer, just the comments of the Dublin clinic’s physio that “You’ve made a Trojan effort to walk, but anyone in your position should have been in a wheelchair months ago.”  Needless to say, these words were ignored, and on reflection, what an awful thing to say to someone who is doing their best to remain mobile in the face of MND.  I was determined not to sit in my wheelchair at that stage and succumb to this cruel disease.  How unhelpful were those comments?

Obviously I continued to wear the boots even though I had now been assigned an HSE wheelchair.  I used the boots and crutches around the house all the time, which proved quite slippy on wet days as no matter how hard I tried I couldn’t get Frank to wipe his paws.  Small pools of dog prints had to be avoided at all costs; the occasions I didn’t manage this resulted in spectacular acrobatics…

By Christmas both my legs, and my lower back, were so weak as to make it impossible to stand at all, moon boots or not.  I resigned myself to the wheelchair full time, and at the beginning of January we took delivery of a hoist and sling to lift me in and out of bed, and the ‘chair, etc.  The hoist’s name was “Fiona” from Germany.  Alas we could not keep her as her legs wouldn’t open wide enough for Neil to fully utilise her.  So we traded her in for a new hoist – a blonde from Sweden called “Liko” who is much more helpful and obliging when her legs are parted!  Liko and Neil are now very well acquainted…

Right now I can’t wear the moon boots, let alone any of my own shoes and boots due to the foot drop, Plantar fasciitis, and the simple absence of any strength at all in my legs, feet and toes.  Though they still feel everything!  So I’m the comfortable slipper girl now.  After giving away much of my own footwear collection, I’ve kept my very favourite boots and shoes.  Come hell or high water, and maybe with the help of some power tools, one day I WILL get them on again, even if it is, only for show. 

Don't forget to join my new Facebook Group https://www.facebook.com/groups/632385993483612/ where there's some photos to go with this blog - and not all of them shoes!

More soon…

Caio

Eimear X

Part 1. Appalling?

Welcome to my Blog.  In the beginning it will make for stark – and quite lengthy – reading.  However, I’m going to update it really regularly with stuff from my past and stuff that’s happening now, and as the episodes unfold, I hope you’ll see plenty of humour and laugh out loud with me!  Motor Neuron Disease (M.N.D.) isn’t side-splittingly funny – but life still can be, hopefully. 

I’ll have to start at the beginning of my life changing event so you can follow my journey properly.  I’ll try and make the next one a bit brighter…  For now, I’m Eimear, there’s a small bit about my life above on the banner.  I’m 47 going on 25 LOL!  And you’ll read more about me as we go along in this little blog.

Just over a year ago – 15^th January 2013 - I was involved in a car accident locally and taken by ambulance to Wexford General Hospital where I was examined and x-rayed.  At this time I was diagnosed with no broken bones, but some bruising.

Subsequently I suffered severe pain in my left hand which was re-x-rayed a week later and a broken scaphoid bone was discovered and put in plaster.  During this same timeframe I was finding it increasingly difficult to walk, and even stand.  This was diagnosed, again at Wexford, as “foot drop”.

I visited the fracture clinic at Wexford up to six more times for appointments there under an orthopaedic consultant when they focused on the scaphoid fracture paying scant attention to my other problems in my feet and legs, despite me putting quite an emphasis on the deterioration therein.  X-rays were taken but no breaks or fractures were found.  The scaphoid fracture went on to make a recovery of sorts, though this was severely hampered at the time due to my having to use crutches for my feet and leg problems that were being ignored or at best “brushed off”. 

The critical problem became my legs.  The “foot drop” became so severe that I gradually lost all control of my feet though they maintained all feeling.   My legs then became weaker and weaker, despite my attending physiotherapy locally and following the regime as outlined by the physiotherapist.

On each of my visits to Wexford between February and April 2013, I was seen by a different registrar under the authority of the consultant.  Due to there being no continuity of treatment (from a different registrar each time), I had to describe my symptoms afresh on each visit.  Each time the registrar consulted my notes and acknowledged “foot drop” and the scaphoid fracture.

By April, my insistence on each visit was that the lack of power and strength in both my legs was my most serious concern, by far the most disabling condition, and the one which I needed most treated.

I attended the Beacon Clinic in Dublin in March and had an MRI scan, the results of which were submitted to my file in Wexford Hospital in late March.  I also attended the Ely Hospital in Wexford where some footwear was adapted for me – this despite no resolution or diagnosis of what was causing my problems in my feet and legs at this time.  Wexford Hospital provided a boot-contraption which helped me walk short distances with the aid of crutches.

By May 2013, five months after the car accident, I didn’t feel my injuries were being treated with correct regard for the symptoms which I had been describing – i.e. – my “foot drop” was acknowledged and monitored to some extent, but the severe weakness and lack of strength and mobility in both my legs was being completely disregarded.  If this was due to nerve damage, the nerve damage was not repairing itself, and was in fact rapidly deteriorating.  There was no improvement or relief from the symptoms experienced in January, or any help or holistic coherent diagnosis from the consultant or registrars.

On a visit to Wexford hospital in early May, the registrar on this occasion suggested I required nerve conductive tests, which would take place in Cork (three and a half hours from me) in 3 months time.  I asked if I could have these tests done privately in Dublin (one hour from me), at my own expense, with more expediency – to which he replied “It doesn’t work like that”.

Being very concerned at the new now 3 month hiatus, where I was not required to attend any clinic for any monitoring of my condition or any diagnosis/treatment, I wrote a letter to the orthopaedic consultant outlining all of the above, and my worries.   He then invited me in for a consultation – at Waterford Hospital (an hour and a half from us!)-  when he said he was waiting for the results of my MRI scan.  I pointed out that he had it – from the Beacon Clinic in Dublin - in my file, and it had been referenced on   previous recent appointments with at least two of his registrars.  I voiced my concern (politely) at this apparent lack of communication within his department.  

The consultant then admitted me into hospital at Waterford Regional (one and a half hours away) under my VHI cover in place at that time, for five days during which time various tests were undertaken on me, the last being a done by a neurological consultant - which took all of ten minutes.   The team then discharged me with the advice that they believed my problems were NOT caused by the car accident, and that I would be given a further appointment with the neurologist at a later date. 

I received an appointment with this neurological consultant for around the 19^th of July.   During this visit – again at Waterford - I was asked if I “would like” a lumbar puncture appointment and some bloods were taken.  A referral was given to me for E.M.T. (electro-magnetic I think) tests.  These tests I organised for myself at St. Vincent’s Hospital as the neurological consultant wanted me to go to Cork (three and a half hours from me).  This visit was over in 15 minutes, where any questions or suggestions I made as to what might be causing my condition, were at best ignored and at worst treated with disdain.   I was only asking due to my frustration, worry and concern that now – 7 months after the initial symptoms came to light – I still had no clear, or even vague, idea of what might possibly be the cause of my rapidly worsening, undiagnosed situation. 

This consultation closed with the consultant saying he would see me in September. 

In the second week in August I was at a now routine appointment with my physiotherapist locally – the only person at the patient interface end of the H.S.E. who at any and every stage of my condition was prepared to listen and take on board all of my physical symptoms and mental concerns.  However, she was at no stage “in the loop” of my visits with consultants and registrars at Wexford or Waterford and hence was working with as much knowledge and understanding of my situation as I was – i.e. none.   She urged me to make an appointment before the suggested September date as she was as gravely concerned as me about the continuing and now rapid deterioration and degeneration of my condition.  By now I was barely able to stand to use crutches, and was spending most of my time confined to a wheelchair with still NO idea why.

And this wheelchair I had had to borrow due to wheelchairs not being available on the H.S.E. to people with no diagnosis!

I managed to bring the September appointment with the neurological consultant forward to mid-August.  On this date he asked me to remove my medical leg/foot splints, tapped my legs a few times with a hammer, and asked me to put the splints back on.  As I was sat in my borrowed wheelchair replacing the splints, he casually said he thought I might have Motor Neuron Disease (M.N.D.) but not all of my symptoms matched his opinion, and that whatever I had was not connected with the car accident I had in January - that was an unconnected coincidence.   He stated that he thought that this might be the diagnosis as far back as the first time he saw me as an in-patient, in May. 

My (now) husband Neil and I looked at each other, and him, rather confused, and he then asked how we could not know what M.N.D, was?   He shuffled some papers around in my file, as if the appointment was now over, meanwhile we had no idea of the gravity of what he had just said, nor any understanding.  Neil asked what we should now do, is there someone we should see, or something we should read?  The consultant jotted down an M.N.D. website address on a scrap of paper, and asked if we “would like” to go and see a specialist professor at Beaumont Hospital?   We said yes, of course, and the consultant said he would organise a referral. 

One week later having heard nothing I contacted the consultant at his private practice.  Having done some research into M.N.D. I was obviously very concerned and frightened.  He said that he had sent the letter to Beaumont and would e-mail me a copy “if I wanted proof”.  I said that if he said he had sent it, I would believe him, and ended the call. 

I waited a few more days, and still having heard nothing, I contacted Beaumont myself.  The professor’s secretary confirmed she had received nothing from the neurological consultant at Waterford, but very kindly listened to my story and made me an appointment herself, undertaking to chase up the referral at her end.

On August 29^th I arrived at the professor’s clinic at Beaumont where she and two nurses listened carefully to a shortened version of all that is above.  The professor decided she wanted me as an immediate in-patient for tests and made sure a bed was available that day.  Tests that she intimated should have been undertaken “months ago” and the few previous tests I had had, were to be re-done.   Following an intensive week of tests as an in-patient and a short period awaiting conclusive test results, I was given the diagnosis in early October by the professor with two specialist M.N.D. nurses, that I have Motor Neuron Disease.  They made themselves available in an extensive consultation to try and answer all the immediate questions that Neil and I had. 

Phew!  And that’s only up to last October.  Loads has happened since, but to follow my story and get a full understanding of my life now, the start of my current life-changing episode had to be recorded in full.  It informs everything about where we are now and highlights many issues surrounding how any ordinary person can have their life transformed forever and terminally.  Diagnosis of Motor Neuron Disease, and particularly the very fast, aggressive version that I have, is devastating enough.  To go through what might be at best described as inept handling of it for 10 months helps not one jot. 

More soon

Ciao!

Eimear X