Tuesday, 20 March 2018

I'm refusing the diagnosis ...... but then what would I know?

Had my annual check up with the Neurologist a couple of weeks ago. Apart from him being quite young (and definitely charming) I came away with the usual feelings of frustration and, dare I say it, anger. These feelings were brought on by the fact that he still has the conviction that I have "early" Parkinson's Disease. Of the early signs listed in the illustration above he only found some slight resistance in my wrist joints during one of his tests ... hardly surprising really considering both wrists have sustained very bad breaks in the recent past which has left me with some residual stiffness. I have no signs of Bradykinesia, no tremors at rest, no sign of decreased facial expression!

As far as the progressive symptoms listed in the second illustration I will admit to suffering from several in the list!!! ..... fatigue, swallowing problems and memory loss. And I do get strange jerky tremors in my legs sometimes when trying to slip my feet into my shoes while standing, or when putting trousers on! I also continue to suffer from nausea, loss of balance, left-sided facial pain, numbness around left cheek and side of my mouth, irritation in left eye and double vision ... but I have had these symptoms for at least 10 years!

I asked whether my 'symptoms' could be due to the meningioma, or maybe a result of radiation treatment, but he was adamant that this was unlikely because of where my M is actually sited. I really cannot understand this because, although it is described as Left Petro-Clival, the MRI reports routinely state that it is lying against the PONS:

The pons contains nuclei that relay signals from the forebrain to the cerebellum, along with nuclei that deal primarily with sleep, respiration, swallowing, bladder control, hearing, equilibrium, taste, eye movement, facial expressions, facial sensation, and posture. 

Suffice it to say that I am not convinced that I have early Parkinsons, especially as the literature makes clear that diagnosis of the disease is not in any way simple, especially in the early stages. Other conditions, such as brain tumour, can indeed produce similar symptoms ......so I am hanging on to THAT for the time being at least! Having a couple of Ms is quite enough to deal with thanks!

Sunday, 7 January 2018

Another year, a new adventure ..........

I have not been very good at keeping up with this blog and there are several reasons for this, both good and bad! On the bad side I was pretty banged up from that fall in February and it took several months to get over it physically, while the mental side of things have not quite come right yet .... I am still quite nervous when walking outside and find that I easily lose my balance. Also there has been no improvement in the old problems of headaches, poor sleep, memory loss, etc, which is very depressing.

But on the good side I have found a new interest in my poetry writing and seem to be doing OK with it, as several poems have been published in various journals and books. Maybe I will have the nerve and energy to publish a little book of my own one day!

Also on the good side is that I am now back to playing bowls again which is something I despaired of initially after the fractured right wrist! I attempted to play using my left hand but it is remarkably difficult as it means relearning everything including stance, while trying to re-think your shots to suit bowling from the opposite side! However, after 8 months I was able to hold a bowl with my right hand again although I have had to change bowl size to a size Zero. No matter just as long as I can play once more!

Another good thing has been that we have managed to find a smaller house on flat ground, and with no stairs, and is not quite finished being built yet. It is in a nice village closer to the city and nearer to both my daughters. Happily we found a buyer for this one almost immediately. This is a great relief as we have been searching for quite a long time, although it is particularly hard on hubby as he does a lot for the local golf club and will miss his mates there. However, there are several golf clubs near to the new house which is good, and even a bowling club in the same road! We shall miss the sound and sight of the sea but, other than our 12 years here at the seaside, we have always lived in the country so I am sure that we will enjoy our new life. Another adventure begins!

Sunday, 5 March 2017

Bowled over ...........again!

How strange life is .... 6 years ago I fell over coming home FROM  a bowling awards night and bashed myself up good and proper, I also broke my left wrist rather badly. Now, well ten days ago (24 February), I have done it again by falling down our outside staircase on my way TO bowls at 8.30 in the morning.

This I time fractured my right wrist, which had to be pinned, and sustained a couple of facial fractures. As well as cuts and bruises of course. Spent 3 nights in hospital and am now coming right quietly at home. Under various specialists and have found them all very thorough and caring so far. 

The worst of it all is not being able to bowl, and missing out on various championships and events that I was involved in. But hey! It could have been far, far worse.


descending her eyesight deceived her
she tumbled downstairs and it peeved her
having got such a clout
that she knocked herself out
a medical service retrieved her

the ambulance men did some things here -

their injury gear almost sings here
but she cried - 'don't go quick
cos i'm feeling quite sick,
you sure that this motor has springs here? '

the Casualty staff got her sorted
from the dire disaster she'd courted
after all sorts of bods
did enumerable prods
all lesions were clearly reported

then came stitches and plaster and more
and admission to Surgical floor
she praised all staff involved
for the problems they'd solved
and advice she'd no longer ignore


Monday, 19 December 2016

And the good news.....?

I had my annual review yesterday and saw the neurologist who I met for the first time last year. It is just over 7 years since diagnosis of these two skull base M's, one of which was zapped with fractionated stereotactic radiation.
My main symptoms have remained the same since treatment and for the past few months I have been feeling pretty rough. Yesterday the N said that that I am showing the beginnings of Parkinson's Disease ... some muscle rigidity in right arm and leg, and balance difficulties, which probably explains the several falls I have had in the past year or so. There is also the double vision but we didn't get to discuss the possible cause of that.

I asked if it could be caused by the M's and/or the radiation treatment and he said NO.

I asked him about my memory issues - difficulties with words, lost memory of past events, etc,, and he told me that he is involved with an ongoing study covering the effects to memory of Parkinson's disease. He asked if I would be interested in taking part and I said that I would.
My annual MRI is due in the New Year. It is a pity that this appointment with the neurologist hadn't been scheduled for AFTER the MRI.  We would at least have known if there had been any changes since January last year.

Feeling a bit down over all this but they say whatever doesn't kill you makes you stronger. 
I just hope that's true!

Sunday, 23 October 2016

The Way Things Are - another poem

The way things are

There comes a time
This much I know
When a mind feels like resting
And I ain't suggesting
That this is wrong
- just my way of protesting
The way things are

Things don't last long
This much I know
And my mind keeps on saying
Stop your crying and praying
Don't make no sound
- just my way of delaying
The way things are

There is a way
This much I know
Be it standing and staring
Be it doing and daring
You'll take my hand
- you'll be smiling and sharing
The way things are

Thursday, 1 September 2016

Spring is just round the corner

Yesterday was officially the first day of spring and I notice that we were only just tipping into winter when I last posted. Shame on me!

We had a great four weeks away on Australia's Sunshine Coast while the weather was at its coldest here at home, mid-June to mid-July ....and it was nice to not need a coat! We played quite a bit of bowls and made some new friends. Hopefully we will go back and visit there again one day soon.

Well there isn't, and hasn't been, much else to post about on the Meningioma side of things. Everything is still the same old, same old. But the jerky movements in my legs are now a thing of the past since I have stopped the regular doses of Carbamazepine (Tegretol). I still take the occasional dose if the dreaded Trigeminal Neuralgia starts twanging away though!

I managed a couple of paintings over the winter months and surprised myself. I need a bomb behind me to get going though! I am really pissed off with feeling tired and not sleeping properly. Its very draining. From what I read on the meningioma and brain tumour forums and websites it is quite common for people to wake up about 3am with headache and nausea!! And the majority report that, like mine, their doctors tell them it is nothing to do with the tumour, or that they have no explanation for it. But we can't all be imagining it! Doctors really don't seem to get it.

It is amazing how similar a lot of our symptoms and issues are whether waiting for treatment, post-surgery or post-radiation.... and there is some comfort to be had in that. And it is wonderful that the Internet enables people to exchange experiences and information, and  offer support to each other.

Worry Beads
Constant tinnitus, headache/nausea, tachycardia in the middle of the night, double vision, poor memory. But pains on the left side of face are fairly well controlled with Amitriptyline taken before bed so that's something. I do worry whether or not one of the little buggers is growing ........