Thursday, 29 September 2016

Neurodisney

As I type this 
I am sitting in a waiting room
In clinic D
Which is the Motor Neurone Disease clinic
In Beaumont hospital
On the north side of Dublin
I think I mentioned that my Dad was diagnosed with MND a few months ago
Which affects his lower limbs 
His hands are pretty much crippled
He can't open or close buttons 
Pull his zips up
Has trouble eating 
Opening bottles and jars
His legs are also affected
And he now walks with a stick
At one point today 
Dad came out of the bathroom holding his trousers up
And I had to zip and fasten them for him
Not that I mind doing it at all
It's just sad that he can't 
It was a real shock when he was diagnosed 
And we were all very upset 
But we are told his particular illness is slow progressing 
So 
Every couple of months 
Dad visits the MND clinic in Dublin
Where he is seen by the top neurologist in the country 
Professor Orla Hardiman
Amongst others such as the physiotherapist, the psychologist
And various other specialists 
This time 
Myself and my sister have made the trip to Dublin with my Dad
To give you an idea of the journey 
Dublin is on the east coast 
We live on the west coast 
And Dad lives right in the middle between the two
It's a three hour journey each way
Which makes for a very long day 
I really wanted to come today though 
To support my Dad 
And also support my sister who drove today 
I wanted to experience the clinic 
And meet all the specialists that Dad talks about 

My sister and left home at about 9am this morning 
We hit the road in good spirits 
Prepared for a long and possibly stressful day 
We arrived at my Dads at about 11am
Which is the house I grew up in
I don't go back to my home town as a rule 
As it is just one big trigger for me 
We drove through the town itself 
Some things hadn't changed 
Others were unrecognisable 
Being back in my childhood home is always very strange 
Every time I visit there it seems to get smaller 
Or maybe I'm getting bigger
I took a walk around the living room while waiting for my Dad 
So many ghosts and memories 
Mostly not good 
I could almost hear the shouts of arguments 
Feel the tension
The bad energy that lingers 
Truth be told 
I don't like being there 
I never did 

Anyway 
We hit the road to Dublin
I decided not to take my meds until I got home 
As I wanted to be as alert as possible
We arrived in Dublin at lunch time 
Found the hospital with relative ease
Parked in the disabled bay
Getting out of the car and in to the hoSpital 
Was akin to getting a child ready 
We had to put his jacket on 
Get his bag with all his bits and bobs
Get his stick 
Fix his clothes 
All the time watching that he doesn't trip or fall
The my sister accidentally knocked Dads disability parking disc down the front of the car 
Which with the use of a handy credit card 
We managed to retrieve 
And headed in to the hospital
As I walked through reception
I saw a sign for ST. Michaels ward 
Where I spent time when I was 19
In the detox unit 
Detoxing from heroin and methadone 
I was just a kid 
In a locked ward with hardened addicts
It was there I was first told that I had anorexia 
Bad memories 
We found clinic D
And took a seat in the waiting room
My sister and I went to get teas and coffees and sandwiches 
Which we had while we waited 
Looking around 
There were people in all states of MND
Some like my Dad walking with sticks 
Some in wheel chairs 
It was a bit of an eye opener to see the way things could possibly go
We weren't waiting long 
Before we were called to see the first doctor 
Dr. Amina Coffey
She was a young Muslim doctor 
Very pleasant
And very thorough 
As she carried out the examination
My sister took rough notes of things we would need to remember 
Then professor Hardiman saw Dad briefly 
They seemed happy that things were going relatively well
And there was no great deterioration
Next we saw Niamh
One of the physiotherapists 
Whose area seemed to be a closet off the waiting room 
She went through a questionare with Dad
Now we are back in the waiting room
My sister is dozing 
I am blogging 
And Dad is looking pensive  
In with the doctor 
Dad mentioned that his appetite has been effected 
And later on admitted to me that when he is hungry 
He can't just make something easily 
So he just has a cigar and a cup of tea 
This worried me some 
So the doctor weighed my Dad 
His weight was 76.9 kilos
I asked what it had been at his last check up 
She told me that it was 78.9 kilos 
So he has lost a little bit of weight
Not enough to be alarmed 
But it's something to watch 

It's now just after 4pm
And we are all starting to flag a bit
Waiting around like this is pretty exhausting 
And we still have the drive home to look forward to 
It's a real role reversal though
My Dad used to bring me to Dublin
To appointments 
To treatment centres 
And now I'm bringing him 
I can really see him getting old 
And it's not nice 
My Dad was always active 
Coached basketball teams for years 
And to see him deteriorate is tough
But that's life I guess 
Anyway 
I'll leave you here 
And hopefully we'll be finished her soon
I'm sure some of you can relate to parents becoming ill and old 
I was wondering how you all deal with it ?
Right 
I'm off 
See you on the next post....

3 comments:

  1. Oh Ruby, I am so sorry for you, and for you Dad and family. It must be so tough on you. If there is anything at all I can do, I hope you know that I am here for you, always.

    My mum has MS (multiple sclerosis) which is also a neurological illness, so I have an idea of what you are going through.
    xoxo

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    Replies
    1. Thanks Annie
      I appreciate that

      Oh your Mum has MS?
      I have a couple of Friends who have MS too
      They go to horse riding with me

      I just read your last post
      And you are staying with us!!
      So happy and delighted for you
      You would have been so missed

      Xxxxx

      Delete
  2. my mum has ms too and i did look after her before she got too poorly and went into nursing home, my dad was fit and healthy all his life but died suddenly a couple of years ago, mum still going you just don't know but yes its difficult , jo x

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