Matthew Fraser MND Charitable Trust

Funeral Service Details

The funeral service for Matthew will be held at the Church of St Michael & All Angels, Oxford Tce, Christchurch on Wednesday the 21st of December at 1:00pm.

Sadly this is not a message from Matthew

Sadly this is not a message from Matthew

Matthew died at 2.40pm on December 16 2011 and this is from his family. Since his last message went out to you all Matt’s well-being slipped. He contacted a bronchial infection, and his body was exhausted. he effort of using his computer and replying to emails rapidly became too much, but he conserved his energies as best he could and was still able to type short messages to family. He managed his own life right to the end.

He died at home which was more than just a wish for him – he was insistent this would be the only way for him. Early in the morning he called Zara and using an alphabet board conveyed his message and requests. "I am dying". "Please get the children up." "Call the doctor and the palliative care nurses ." Those weren’t his last messages. Shortly before he slipped into unconsciousness he had Zara hold the alphabet board up again and slowly and laboriously spelled out to his Mum - "I love you". Then to Zara - "I love you" then “I’m proud of you”.

He slipped away as sweetly and easily as a boat turns out to sea and his family were with them to the very last breath.

He was a brave man, a much loved man but he was also a husband, father, brother and son, We loved him so much.

Zara, Harriet, Damian and Margot Fraser
Chad, Kate, Tim and Simon Fraser

This verse from Invictus by William Ernest Henley seems sum up Matt and his determination to make as much of his life as possibly could.

Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

Matthew would have wanted me to add, thank you everyone for your friendship and support

Kate Fraser

Mum said so...

With the economy in the doldrums and several large earthquakes our fundraising plans had been shelved for the long term... and yet the trust is running on empty.

So mum says ‘bugger it’... let’s design six t-towels with my recipes and see what happens... so now you can purchase them through Solomon Grundy. Who am I to disagree with her!

Wonderful gift ideas or for wrapping up food when delivering... with fun recipes!

Launching of solomongrundy.co.nz

It’s here. It’s now. It’s live. Our newest business venture.

But it needs your help. Please check it out and then tell everyone about solomongrundy.co.nz

“I have always enjoyed finding small gifts with big meanings, gifts that will cheer and comfort. And when a friend – thanking me for a gift I had sent to her mother who had recently moved into care – suggested I go into the gift business, it was a real light bulb moment.”(Zara Fraser)

It’s a new business venture for us and keeping me very busy with the website development with special help from our resident Sydney Guru, Greg Donaldson ... hence why it’s been awhile since I’ve done an update,

So what is it? Go have a look ... and all will be reveled - http://www.solomongrundy.co.nz/

And remember spread the news!

Madness

Sometimes I think I’m going mad... I can go a whole day when my only conversation (it doesn’t help when a carer can’t speak English) is going on in my head... sometimes I just want to talk, not to myself but to real people... even electronically I have to keep it simple because of tiredness and fatigue. It even gets to the point just before dropping off to sleep that a third voice starts ‘chiming in’... sometimes to shut the other two up! I do find myself day dreaming sometimes and then something funny enters my head... I crack this wide smile and the poor carer wonders, what have I done. Sometimes the moments are just wrong... I start laughing and the carer thinks it was something they did... sometimes you just let it ride. It’s best I don’t give any examples!!

When I say (figuratively) my voice has gone, I mean the mechanisms have stopped working... I can no longer use my mouth and tongue to form words. You get to the point when no one can understand you... so you just don’t bother using your mouth for anything. But I find myself saying aloud when I’m alone... ‘Hello I’m Matthew Fraser‘.

I always wondered what would happen when you can no longer talk and respond to people... no the tongue doesn’t shrink away and just lay around like having a bad hangover (although one night I was dreaming about eating a steak and woke-up chewing my tongue !! )... your mouth doesn’t hang open unable to close, dribbling all day. It’s hard but life still carries on and everyone just adapts. Really nothing changes that much and it’s just a new challenge... making sure you’re still being heard.

I was pondering the last two sentences overnight... and realized that is so bullshit. It’s written so people won’t feel sorry for me. The reality is... it’s very hard... every single day is a battle but somehow I keep moving forward. It’s not inspirational or anything but plain old one day at a time!

Saliva is a real issue at this stage. Some days are good, others are what we call a ‘phlegmy’ day ... which means a whole day or, longer of a dribbling mess, some coughing and clearing of the back of the throat. I have some fantastic secret weapons to try to avoid these bad days...

• Currently with morphine taking for the hip, the side effect is reducing and thinning of phlegm/saliva... on the good days.
• I’m using a saline nebulizer every morning. it’s a simple machine turns saline into breathable mist... which breaks down that chunky stuff that has built up over night or longer. It also makes anything else just that little bit easier to cough up! Getting this machine was the best suggestion.
• Tongue sticks. These look like lollypops but have little sponges at the end... officially called oral swabs. Anyway I use these first thing n the morning by scraping off the chunky buildup from the roof of my mouth and the tongue. This stops any buildup down the back of the throat.
• Using Bipap to exercise lungs and move secretions out... about 2hrs a day.
• Drinking dark grape juice to help breakdown the long stringy stuff... if needed on bad days.

Since I started doing all the above... I haven’t had any major issues for a month or so... apart form this week where I’ve had a hard bogey pushed so far up my nose... nothing is moving it... and as a result my nose is running all day! (as at publishing this post the offending bogey is gone!)

Dead weight

You know that moment when you first wake from a really good sleep and your body is sluggish... I’m noticing that mine for a few seconds is this dead weight... everything is so relaxed but I can still feel everything... it’s like gravity is forcing me down. The movements come back a few seconds later and I can kinda move about... it’s quite scary as it’s giving me an insight into what total paralysis will feel like. Very weird to think I still have much more to endure. …Such fun!

Movement

We have had quite a few carer changes in the last two months and there is something I became aware of. Most PALS have a reputation for being fussy with how we sit, get placed or just get moved in general. With this disease you feel everything... like right now my shoulder is killing me... only because my arm was put into a position four hours ago which was fine, but now with pressure and no movement the pain is building and I have four minutes to wait for the carer to start who will move it all around. Over time I get to know these limits and if the placement isn’t perfect... you’re in for a rough ride. I’ve tried training everyone to be the same but with time and experience I have learnt to just let go and not expect everybody to be and do the same... we are all different. It all just kinda falls into place eventually.

Cocktails and Dreams with Nervous Nanny

What a difference a few days make. Last week I’d had enough and come to the end of my tether... I was not in a good head space which wasn’t helped by watching ‘I shouldn’t be alive ‘ a survival TV series and also this controvical BBC show from the UK, Terry Pratchett: Choosing to Die on assisted suicide in Europe, featuring some MND people ... not, I hasten to add, was I feeling suicidal.

About two months ago my right hip really started giving me grief in bed and causing me to wake in sheer pain and not being able to move off the pain was a struggle. We tried everything from creams to pillows. The Doctor was called and it was time for the big guns. This phase I will call drugs, cocktails and no dreams. First we had too much Clonazepam (drops) one night after a panic attack and I was not with it for few days afterwards. Up the bum pain relief I learned is called, oxymoron. Following an x-ray on my hip, I now have arthritis in my right hip from an old ski injury (http://www.matthewfrasermndcharitabletrust.co.nz/pdf/Reinz_article.pdf page 46, top paragraph)... because my muscles have wasted away so much, I was now lying on my arthritic hip with very little padding, hence the intense pain.

After much discussion I went for a steroid injection under x-ray... it did nothing but cost a lot of money and cause frustrating time delays to finding an effective way to fix my pain. It did ‘dial the pain down’ a little but I was still waking in pain and in turn Zara and I were getting really bad sleeps. But to make matters worse my saliva changed where it was pooling in the back of my throat causing me to cough all day long... tiring me even more... I became this dribbling mess! In the end I started using the BiPap machine during the day. Some days I was really not good even the shower water was too much!!! I used every trick I had for saliva... I had so much grape juice my tongue went black! Nothing was working and I had exhausted all my ideas.... so we called in a Palliative care Doctor to look at all other available options!

Hard drugs were called in after much discussion and after my first night on a small dosage of Morphine I felt my body relax and almost sigh with relief. I slept right through to 5am... and nearly bounced out of bed. That was about a week ago and I’m still adjusting dosages for maximum pain relief while making sure I have no side effects. The legs do feel weaker but it’s a small price to pay for the pain free sleep I’m now enjoying.

As for saliva the morphine fixed that to... in a cruel joke kinda way.

So I’m slowly climbing out of the hole and assessing how my bodies coped. It’s weaker now and I’m still using the BiPAP.

I found this really good page on pain relief that would’ve been good to read before I started having problems!! http://www.mndcare.net.au/living-with-mnd/symptom-management/movement-and-joints/pain

While I was ending my messy dribbling phase, we had a boy’s weekend with Dad and brother Tim. They were left in charge of my welfare... these is Tim’s words!!!

The Nervous Nanny, (Tim Fraser)
Sometime ago, Matt asked if I could come to Christchurch to stay with him and give Zara the opportunity of having a weekend away with her girlfs. I agreed knowing that I had a cunning plan – bring Jens and Maddie along to help with cooking, cleaning and entertaining Margot, Hatty and Damian. Too easy. However, in true Fraser fashion, the best laid plans of mouse and men…. turned to cheese. Kate, my Mother, took the kids off to Hamner Springs (for what turned out to be another litany of natural disasters) and it was going to be left to Chad and I to not only fend for ourselves, but also make sure Matt survived our tender ministrations. It fair to say my confidence evaporated like a puddle on a nor’west day.

This was also the first time I had been back to Christchurch since the earthquakes and I knew that those events had also left its mark on the family. I couldn’t go under it, I couldn’t go over it, I couldn’t go around it – I just had to bloody go through with it. When I arrived on Friday afternoon, I was given the programme from Matt and he explained how his system works. Very simply:

• Keep calm and don’t panic
• Follow the flow chart and keep asking questions
• A blink means yes and a stare means keep going
• Follow the flow chart and if you don’t understand, start again
• Don’t do anything unless you are certain about what you are doing
• Keep calm and don’t panic

You get the picture – a game of twenty questions – however this time there is somebody who relies on you getting the answer right, quickly - at 3am, 5am and again at 6.30am. This can be disconcerting when Matt is moaning like a banshee or dry retching and trying to vomit – and you have no idea what is going on.

The short story is that both Dad and I discovered we actually made a good team. Neither of us could have looked after Matthew alone at night, but together we worked through and solved the issues that came up (sorry about the lip Matt). It was a good thing to be doing I discovered. And the rewards for getting it right – that beatific smile.

But I guess spending time with the ‘Sage of Merivale’ helps you see things a bit differently – and put some things into perspective:

• Patience actually works (who would have thought), and that things don’t necessarily need to always happen in a hurry
• That a full life is all about the attitude you bring to it, not about what you fill it with
• That it really is reward enough to get that beatific smile when you get the right answer.

The smile alone Matt, is worth coming back for. So until the next weekend Matt – ciao.

Captain underpants... and Chewbacca sounds

Warnings
This latest update contains a lot of body fluids... so if you’re slightly squeamish at that... stop reading.... but unlike you it seems to occupy me most of the day...

I started this update four weeks ago... I must start to be brief... more one liners... as come the afternoons my neck is weak and at a very odd angle (adding to that ‘special ‘look together with chin dribble)... and my energy levels are low!... so if you read between the lines.... you could say by the afternoons I can’t be bothered and would rather snooze!!

I have been having lots of bladder issues for the last two months. But it started to get really bad in March. Normally my bladder is very good and I self regulated myself around when carer’s are here and I can stand and pee (more like... standing while folded in half while tentively balancing on my toes... let’s just say health and safety wouldn’t approve). But then it all started to go wrong... with just a lack of ‘hanging on’ I kept peeing myself. Not really what I thought I would be doing at forty. The worst was in bed and going everywhere (up my top and back) and having to stew in it. Apparently although MND doesn’t affect your bladder muscles (it only affects skeletal muscles), sitting in a wheelchair and lack of movement will affect your urges!!... I’m so lucky!!!... So now I wear hospital grade nappies in bed and kind of pads for afternoons.

Man nappy lessons
• Don’t pee full bore they will leak... slow release
• Fit correctly... or ‘the boys ‘will get caught!
• Too loose and they will leak
• Size matters
• Always point “the Crown Jewel’s’ down when fitting
• Make sure the foot of the bed is not too high, as it will run the wrong way!!
• The pads are good for desperate situations not being lazy!



Strep
In March I had really bad strep throat, which my doctor diagnosed. I could hardly swallow and drinking was a complete nightmare. I was given some really strong antibiotics which really knocked me about. Originally we were putting them down with PEG food... but that was effectively having them on an empty stomach... making me vomit and feel like shit all day. I was pretty low that week.... just going through the motions of the day hoping this would all go away... and it did! The doctor reckoned it was my body’s way of dealing with stress and adrenalin caused from the earthquakes.... maybe it was or maybe I didn’t help matters by sleeping beside an open window in March!!!

Lungs
I’m absolutely petrified about getting fluids on my lungs... as this may lead to chest infections and before we know it... a hospital visit and.........!
So when the earthquake affected our water and we started using bottled water... I began to get a lot of flem build up with lots of coughing up of large sticky flem.... lucky with suction we could get most of it... but it was very tiring. I soon discovered it’s the chemicals they use in the bottled water (some more than others)... so then I switched back to tap water and the problem went away!

Muscles
Every movement I now make with any part of the body that still moves is made with quite a lot of effort... resulting in quite a few grunting noises and all at very inappropriate moments. Sometimes ending with the classic Chewbacca groan of success!!

The muscles certainly feel worse for wear now. It aches somewhere during the day and not always the same spot... I’m living on Voltaren and Panadol, which does take the edge of a little, and I find myself looking for sloping flooring just to shift the weight a little to somewhere different. Only when sleeping or dozing does it feel good.

Hospice
I booked myself into Nurse Maude Hospice around the middle of April to give Zara a break from all my nighttime antics. I’ve started to be a nuisance, requiring movement throughout the night to ease pressure points, move me when I get myself stuck or have some sort of coughing episode. It’s inhumane to expect someone to keep doing me every night and function for the kids during the day... so I took myself off to give Zara some sleep without the worry or stress of me.
I was nervous as I see myself as disabled not terminal ill and shuffling towards the exit. I needn’t to be worried.... the staff were amazing and I really didn’t have any major issues. It helps taking all my carer’s... so my routine carried on. Few teething issues over night the first night resulting in not having any sleep... I was so exhausted the next day that I fainted after the shower. If I was honest I was actually listening for death... I wound myself up so much!! The next few nights were much better....
I managed to clear the entire common room when watching a movie (Love and Other Drugs) in the afternoon with a few families looking on... a fairly sexy scene came on... my carer was trying to fast forward (just making it worse)... everyone kinda up left.... I just laughed!!! Then another time I was watching some mindless violence (Mechanic) and behind me was a lady knitting (tic tac tic tic)... under her breath (loud enough for me to hear) kept commentary on levels of the violence... I gave up and went back to the 12’ TV in my room.
It was certainly better than expected and if they have me back... I’m sure I’ll be back!

Latest project
With the help of the carer’s we are experimenting with me cooking for the family two nights a week.... tasty and simple enough that all Zara will have to do is pull it from oven in one pot and the kids will eat it! Preparation is done earlier that day and is simple. So far we have had one success!!!
The idea is that this is one less stress for Zara... and it’s kinda fun... although I can’t taste it!! I know there are some foodies out there... so please email your recommended family friendly dishes...