Matthew Fraser MND Charitable Trust

What friends and strangers have done for me is truly amazing

So many people have helped us in so many ways, but I must tell you the story about Andrew Johnson (Jock). We started school together (Loreto College), went through some of high school together, moved in different circles but he was always someone I could call a friend. We came and went from each other’s lives over the years with the last time being our wedding. Then he hears about my condition and turns up at our first fundraising event. What he does next is truly amazing and I will be forever grateful. He turns up at our place and says –‘I’m going to plaster and paint your house’. He also, with the help of his mates organized for the plaster and scaffolding to be donated. Jock runs a team of plasters for Rockcote that is a warranty team, fixing others mistakes. Every weekend for nearly three months with the help of Gav, Lee and other mates of theirs who lent a hand they did the job. I think you will agree with me, this is an amazing kind and generous thing to do.

I have made this video to thank Jock and everyone involved.



An extract from, Paulo Coelho (warriorofthelight.com)- a little deep, but thought it summed it up nicely…..
So I let Kahlil Gibran - with his unique mastery – describe this sentiment (which I have adapted because of the size of the column):
“Your friend is the field where you sow with love and harvest with gratitude. He is your home, he is your table”.
“Even when he is silent, two hearts continue to talk”.
“When you have to leave him, don’t suffer, for you will see the importance of the friendship all the better because of this absence, just as a mountain climber sees the landscape around him better when he is far from the plains”.
“May you be able to share with your friend all that is good”.
“Let him know and share not only your moments of joy but also your moments of sorrow”.
“And know that a friend is not by your side to help you kill the time, but rather to help you enjoy life in all its fullness”

Ps- I have added some photo’s of my swimming… look and the bottom of the ‘how can I help? ‘Page

I would also like to thank Damien Monley and Justine Israel who own the Flat White restaurant in Sydney. They came up with an idea to put together a regular event called –fundraising foodie. As we knew each other they made me their first event. It’s a very humbling and strange feeling knowing people who had come along to their event didn’t know me!!! They raised an amazing amount and the night was a lot of fun and a huge success. Thank you to everyone involved.

Thank you to our friends who have done so much for us this year. Sometimes thank you never seems enough, but it is all I can say. I hope it’s enough.

Have a happy Christmas and New Year. I know I will be.
  

3 monthly Respiratory check up gave me a ‘stable’ report.

After the normal tests my FVC was 68% that’s only a 2% decrease in three months -you could almost call that a margin of error!! So that is very good.
A friend asked me the other day, how is it going and has anything changed. It made me think about ‘how does it feel’ when suddenly something doesn’t work and how do you articulate this. The change every day is extremely subtle, although the twitching is a sign. You really don’t know that anything drastic is happening. When you try to do something suddenly you realize you can’t do it anymore. The other day I went to scratch my nose and realized I couldn’t!!! it’s the little things that annoy you. You start to think things are going well and ‘whammo’ something goes, which can be the real frustrating thing with this disease. But all the treatments, supplements and mental attitude are there to try to slow the progression. By how much is the question… so keep watching and we will find out together!!

Thank you to you all, as the trust has purchased a Gewa page turner. This is fantastic and another item that gives some of my independence back. I’m onto my second book already!!!

Food from friends has been a huge success. We have sold out of the first print with the second print due in December-hopefully. If we were selling them in book stores it would be in the best seller list in New Zealand which is an amazing feat. Thank you to everyone who has help make this book a success. Keep spreading the word so we sell out of the second edition as well!!!

Can you believe that I broke the van lift!!! I was out at the movies with my brother in law when the lift got stuck halfway out…. Luckily I wasn’t on it!! But that was the fourth time we had problems with it and I didn’t want to risk it anymore. The lift came with the van which was not designed to lift a 150kg power wheelchair, let alone with me sitting in it. So, out with the old and in with a new hydraulic correct wheelchair lift. I feel a lot safer now although the new lift was not cheap.

I have discovered the most amazing thing to sleep on –a ‘slippery sam’. This is a very slippery fabric that you fold in half and lie on. Now moving around is no longer a real effort and I’m no longer cast!! But be careful…. one morning a carer just about dragged me out of bed nearly landing on the floor!

I took Harriet on my wheelchair by ourselves to school today which was fantastic… driving all the way up to the classroom steps like some limo driver!! Kissing goodbye and of she went. I really enjoyed that.

It’s quite hard when you have a mild head cold and all you want to do is blow your nose.

Last week I reached that great milestone and ‘walked’ Harriet to school. I think we were both very happy to be doing it. Unfortunately she bought home a cold to share. I had been so proud of myself as over winter I had remained cold free. On the first day of summer, I get a head cold!! But I am over the worst of it now, apart from the ‘snotty’ nose. A cold is my worst enemy as it speeds up my progression, makes me feel rotten and there is a real concern it may get into your chest causing respiratory problems.

The only obvious deterioration is my left hand thumb has been twitching madly which effects my mouse movements. For me when a particular muscle starts twitching it means it is under attack. What is really happening is that the nerve is losing its connection with the muscle and the muscle is turning up the ‘volume’ looking for and clear message, hence the twitching and fasciculation (This is how I describe what is happening from my own research. I find it a good way to work out what is happening with my body and to plan ahead.

I would like to thank everyone for the huge amount of support you have given to ‘food from friends ‘, it is still selling extremely well, so keep spreading the word. A real bonus for me out of this is a lot of people are becoming more aware of MND and this may lift its profile and even get some smart people looking for a cure!!

I have got a new mattress which has little pockets of air, called a Roho. It takes a while to get used to as you are basically cast. But it has stopped me getting sore hips as I can only sleep on my side and can no longer move around.

A really big thank you to Terence McLaughlin, a good friend and old flat mate, who has built us a fantastic fence down the driveway. He has given up his weekends and time away from his own family to do this for us, so we can all play safely down the driveway. Thank you to Rachael, his wife for her support especially since the weekends was her time of. The fence has been painted by Zara, Adrienne (Zara ‘s mum) Bill Kingston, Jessmay and the ‘helping hands‘ boys. Thank you.

The article about the cook book in today’s paper

Just a quick note to the link for the article in the Christchurch press this morning.

Click below:
The heartfelt gift of recipes

And also

Food From Friends: the book for Matthew

Thank you to everyone, the response has been amazing.

Food from friends fundraising cook book is here ...

Earlier in the year we were having dinner at my parents and mum asked how she could help to raise money for the trust. That’s when the cook book idea took shape. My mum, Kate Fraser is the editor of the food/fashion feature section, Zest for The Press here in Christchurch and the winner of a number of food writing awards. She knows a lot of people in the industry from food writers to chefs and cooks in New Zealand and around the globe. When asked the response was immediate and overwhelming.

Everything in this book has been donated, from the recipes, the photography, book design and layout and my mum who has tirelessly worked so so hard on making this book reality. Thank you.

A special thank you to Greg Donaldson, who has built this website and the new one for the cook book. He has done an amazing job, without him these website’s wouldn’t exist .

Let’s spread the word to as many people as possible. Check out the new website and order forms to help spread the word. Online ordering is also available.

Click and order at: Food from Friends

It’s been a week of birthdays and milestones

It was Harriet’s big 5th last Saturday which was a milestone for both of us. Zara had planned a really great party. A simple party with great games and no other parents! Zara did an amazing job with everyone having loads of fun. It was our first party where I couldn’t really help. I have made a small video of the day, just email me if want to see it!

A few days later was my birthday. YIPEE. I made another year, now 37 with 40 firmly set in my sites. Who would have thought it would be a day I would be looking forward to! My birthday was an odd day, a day of milestones in a lot of ways. For some strange reason I became more aware of how hard it is to be understood and for me to form a lot of the words. The best way to describe it - is as I’m sure a lot of you can relate to, is like travelling through a foreign country and nobody understanding. It can be very amusing! But only I get the joke, most of the time. In the evening my sister in-laws cooked and came for dinner along with my mum and dad and Zara’s mum. It was a great evening apart from my first choking episode. This was very real with everything becoming blurry (unless it was the Belgium beer!). I had learnt from reading from other MNDers that if you just relax it will pass. Just when I thought things were going well MND comes and gives you a swift kick saying …’uh huh I’m not finished with you yet…’.This is very much up there with my first fall…a realisation where eating & talking will become a thing of the past. So maybe it’s time for some junk food while I can!

I have included a wee video of the diner and also my massage therapist with keen helpers!

There is a new fundraising event about to begin …but all will be revealed soon!

We have also been getting some help from amazing friends but I will tell you all about it when it’s all done… it is truly amazing what they have done….

3 monthly check up with neurologist…

…was yesterday and I have to say they are proving to be really good days. It was a fantastic spring day and really warm day. I had my massage in the morning, which always puts me in a good space. Zara, Margot and I all piled into the van to head to the hospital.

After the normal ‘what’s going on’, the topic moved to organ donation. This is something I am seriously considering. I feel this could be my way to help a lot of people; after all I’m not going to need the ‘body’. I need to gather the facts before we do anything. With the things I am doing to my organs they will be in amazing condition, almost pink! I don’t think Trademe would be a good option!!!

Nothing else was covered except a little about what therapies I am doing and how we are working with the health system to get maximum help. There is a lot we do that may help his other patients.

Margot fell asleep through all of this which amused everyone!

We then walked through the botanic gardens with the daffodils all out…I’ll add the new photo!

Back in the van we headed to garden centre as this is my new project, doing up the garden! After a long lazy lunch in the sun (because I can!!)…it was time to pick Harriet & Damian from pre-school.

Za & I had a really good day out…doing normal things…the best kind of therapy!!

The past few weeks have been very stressful, because all of our carers resigned all within a week. That will teach me to write down how well everything was going!

The past few weeks have been very stressful, because all of our carers resigned all within a week. That will teach me to write down how well everything was going!

It will be useful to explain why we believe getting the right carers for the family is so important. I have just read Jack Orchards book, which has ALS and set up extra hands. I was really surprised to read, like a few PALS; that his wife had left him. It got me thinking how /why zara and I are so strong. Sure we have our bad days, but that’s because of the many frustrations of this disease nothing more than that. But without realising it we have discovered a way where we can both have a normal way of life (within reason!).

What people forget is that MND affects not only the person who has been diagnosed but the partner or wife on a more emotional and physical level both with dealing with a diagnosis and all of the needs they are going to endure. I am sure a lot of people would think ‘why does she need so much help’ or ‘surely she can cope with a lot more’. But the way we have chosen to approach this is where possible hand all of my personal care over to carers and supporting family so that we maintain a normal as possible relationship that does not become burdened with simply being about caring duties. The flip side to this is a heavy reliant on carers (which entails lose of my dignity among other things), having a lot of people in the house (which we lose our privacy) and having to be extremely organized. But these negatives are very minor in the grand scale of things and this system we have developed allows us to be fairly normal family and for Zara and I to be in a really good space. I realize this is very self centered but my thoughts may help others in similar situations.

Then it all turned to custard when the carers all resigned within the same week a few weeks ago, due to issues with their agency. We all went into overdrive trying to find replacements as we knew the agency would not find us someone in time would send us an inappropriate person or worse still loads of temporary carers for each day of the week! After many requests and this latest run in with the carer agency, we have been approved for what is known as Individual Funding. This basically means we are now fully responsible for hiring and training our own pool of carers at a much higher rate than what a carer would earn via an agency and without the huge hassle and stress they cause. We are finally in control of our own destiny! What a difference this has made already with really amazing people already coming forward.

This week we bought Harriet her school uniform in anticipation of her first day at school in October. This first day of school will be a very big milestone in my list of goals. I remember on the day of diagnosis bawling my eyes out realising that I would not see Harriet off to her first day of school. But that was then, and I have come a long way emotionally -we’re my new goal is to make sure I am there for Damian and Margot’s first days of school.

My voice is although has a good volume is very difficult to understand and quite ‘slurry’. Za is often repeating my words/sentences which is great. The rest of the body is feeling good with no obvious signs of weakness, so lots more of the same with positive thinking. Now that I have now written it down it will all fall part!

As much as we were sad to see the carers go, I am excited by the new ones coming onboard. I am even putting a ‘user manual’ together! I wonder what little treats I could sneak in there for me!!!

My trip to the Respiratory specialist

23rd of July – I headed to an appointment with the respiratory specialist in the morning with Za using the van. I have to admit that I was a little apprehensive. Although I have been feeling pretty good this month when it comes to your breathing, you can never take it for granted. A few days before you have your appointment you undergo a sleep test. This basically means you take a small machine home, which connects to your finger and measures your blood oxygen levels. In the morning you undertake another test testing among other things forced vital capacity (FVC). On my previous test only scored 50%...this time around I did really well, obtaining 70%. I must be doing something right and it is always positive to have something going against the trend.
I am now using a website that will be able to chart my progression and to see if we can really slow this down. It also shows all the treatments I am doing.
my profile on patients like me

Notes for my profile:
Functional Rating Scale (FRS) score helps you keep track of your overall condition by measuring symptoms in all parts of your body: head, chest, arms, and legs.
Forced Vital Capacity (FVC) score measures your lung strength and is an important indicator of overall progress.

With the arrival of the van and the freezing temperature’s it was proving difficult to get to the office. It made more sense to stay at home…so I am now retired. I am enjoying being home as I have everything here without being extra work for Zara. Now my next challenge is to keep my mind busy with little projects and I am contemplating doing some training on how to use Photoshop and maybe do something around that.

I had a friend Stephen Greening who owns a civil construction company called Land Form turn up a few weeks ago to ‘do’ our driveway with tar seal. This was just amazing and very generous, as I can now bomb up and down the driveway with kids on the bikes. There was alot of laughter. I did make the mistake of showing Damian (3yrs) how to drive the wheelchair….not a good idea as he kept driving us into the garden!! …with great fits of laughter!

A special thanks to TMP Worldwide and Cliff Haydon from London. This is my old employer from UK days and Cliff who is now the manager, had to put up with me (and my music) as we worked together with a number of clients. They held a comedy night in the bar (with some proper stand up comedians – one was a Perrier award nominee). and held a Laffle – like a raffle but with laughs. TMP matched the amount raised. It is truly amazing what everyone did…thank you very much!!

We have the carer situation under control at the moment with really brilliant people. Although it does mean a lot of different people in the home which is very difficult for everybody, however the alternative does not bear thinking about. We now have a carer everyday in the morning including the weekend and every weekday evening. Hopefully it will stay stable like this for a while.

Food is perhaps the hardest thing for us as a family. Za does an amazing job making sure that our children eat a well balanced diet, which can be very difficult at times. She does a truly amazing job where an easier option could suffice, but the children would suffer. However with also having to deal with all my little requests (which is like Chinese torture for Za) thinking about food for us or the children can be just to much. We have been very lucky to have wonderful friends and family who have cooked delicious meals for us or who have come and taken over the kitchen. Thank you to Kate Fraser (my mum!) who is forever cooking for us, Sue Francis & Sue Idiens who take turns delivering meals on a Saturday, Kristy & Angus Binnie who came and did a wonderful breakfast on Sunday, Victoria Wynn Thomas for amazing vegetarian dishes, Paul & Kez Anderson who help cook with friends and Ann Bergman who whenever is in town cooks a ‘mean’ breakfast.

I am in a good space at the moment and things don’t seem to be getting worse which is helping. My speaking is not flash, but it’s a matter of choosing my words carefully.

Another fellow fighter succumbs to this mongrel disease.

Anne Glengarry died on Wednesday at the age of 64 with her family around her and peacefully. Anne was in our alternative therapy group (which was setup by Paul Blacklow). She was always at the meetings and also a regular at the monthly MND meeting. I really enjoyed sitting with both her and graham and talking through the different therapies. She was always keen to give most things a go! Anne always had calmness about her and she will be missed.

I think Anne had MND for about 4yrs, so I am doing ok coming upto 3…I will keep working on finding ways to slow down the progression and hope a medical break through is only around the corner, before my time is up!!

MND helping hands is off to a great start with 20 boys wanting to help and 4 families. We got 4 boys a few weeks ago and it was huge success …have a look at the photo’s.

The van has arrived and launching MND helping hands.

The van arrived last week for a fitting, which was amazing to finally see it. Unfortunately it had to to be taken away for some minor adjustments, but it is now back ready for the first trip – ‘the exhibit you ball’, with all the proceeds going to the MND Assocation. A special thank you to Richard Peebles and Adam McCormick (Bling Bling) for organising everything including shipping it in from Japan and to the other individuals noted below who also contributed to the van and all the fundraising that has gone on. Thank you.
Ferry Oak Properties
Craig Webster
James Legget, White Fox and Jones
Mark MaCauley, CBRE
Adrian and Paula Raine, Graeme Donaldson-Ray White
BodyTech, Steve Kaminski, welding and seat Installation
Banks Car Upholstery, Carpets to Van
John Kitley Owner Bling Bling Motor Co, Importation of Van and organizing everything
Adam McCormack, Bling Bling..He did all the work really and organized everything. He deserve a medal, it was no easy Task
Aucsat, Vehicle Importation firm, Blair Robinson. Discounted the importation costs


Some of you may not know that I am the President of the MND Canterbury branch. I have been looking for a way to increase the profile of MND in Canterbury and a way that perhaps we could help other people living with this condition. I came up with the concept of where school students volunteer their time to help those with the sort of jobs that get moved down the “to-do” list due to lack of time, for example, painting a fence, mowing a lawn, walking a dog or simply doing a odd jobs as simple as changing light bulbs! Although I got this idea from a similar scheme in the USA they have given me their full approval to adopt it here. So on Thursday 7th June I went to St Bedes Collage to launch the New Zealand concept – MND Helping Hands. This is a fitting way to launch the scheme given three old boys (two have died recently) have had MND. The presentation went really well, with Paul Anderson, a good friend and an old boy, introducing the scheme on my behalf and Jo Kleiner the widow of Matt Ockwell talked about how the boys can get involved and come and help the families. Hopefully the scheme will take hold around the country as I have introduced it to all the other branches at a National meeting I attended in Wellington six weeks ago and everyone was excited by the prospects of it.

We have a small video of the assembly-sorry about the poor quality of the sound and video.


I would like to make a special mention of my father Chad Fraser. He has and still is being extremely helpful everyday with taking me around in the car, making and feeding me lunch and toileting me. I really enjoy this time (not the toilet bit) we are having together and it has been fun having him in my life on a daily basis although I am sure he has wondered what he got himself into……especially when I have got him texting on my mobile phone and getting him to order McDonalds (a one off!) through the drive through…..an experience I think he will always remember! I would be very stranded without him.

My progress- my talking continues to be the main area of frustration, with some days it being very hard to understand me. I am on the hunt for software for all my communication needs and I think I have found it in EZ Keys- used by a lot of mnd/als people.

I have some useful points when you are talking to someone with MND who is losing or lost their ability to communicate. Even I have found myself doing some of these when I first was diagnosed and talking to other fellow fighters:
1. We are not deaf or stupid, I know we sound like it…talk to us normally.
2. Don’t expect long riveting conversation, more like simple one liners. You talk we will listen.
3. yes/no conversation are good
4. If you don’t understand, please don’t pretend you do…just say so and keep trying.
5. Don’t ask ‘are you alright’ or ‘how are you’, you will only get the standard answer – ‘yeah good’. You wouldn’t want to hear the real answer and it would take me to long. Talk about other things, normal things.

I have had very big milestone this week. I have finally succumbed to let someone else shower me. After over a year it was asking to much of Zara with everything she has to do, 7 days a week. This rates right up with my fear when I couldn’t wipe my own bottom or dress myself. I don’t think I will ever be comfortable with it, in fact if I had the choice between that and losing my voice I would choose losing my voice any day. Odd I know, but that is the way it is. I have to now get on with it. There will be more events like this, which I will have to overcome. Since the last update we have found a fantastic evening carer, so now with two amazing carers in the morning and evening in place all we now need is the weekend and swim covered and we will be good for now!

A hugely successful day had at the REINZ golf day.

A special thank you to the 160 people who played on the day, the weather was perfect with the BBQ providing good sustenance and the beer and whiskey helping with many a swing! Everybody had a great day.

Thank you to everyone who sponsored a hole and donated prices for the golfers, raffles and auction. The items were very generous including LCD TV’s, stereos and sporting memorabilia. It would take all week to type all the names of the winners of the auction items, but thank you.

We had a number of family teams who were playing including the Methven’s, Sparrow’s, Anderson’s and my brother Tim – thanks guys for making the effort especially those who flew in from Auckland, Wellington and Sydney.

A big thank you to Dean Mackenzie, Harry van Tongeren, Jude Fussell and everyone else that have worked behind the scenes from the Canterbury, Real Estate Institute branch … here is article that appeared in the reinz magazine: challenge beyond the call

A special thanks to the trustees, Greg, Simon and Judy-…..they are truly astounding with their drive, energy and commitment towards the trust and we are forever grateful for the work they have done for my family and I.

On me:
The voice is losing the battle with a lot of people finding it difficult to understand me, which also means the software i use to e-mail is getting very slow with me using a on screen keyboard almost all of the time. I will have to start looking at different types of technology that can do the speaking for me soon.
I have finished with the Chinese herbs, which as suspected had no real benefit…. so I am back on my regular supplements. Let us see if that makes any difference!

We have had a wonderful evening carer, laurel, who came to us via Zara’s sister. Unfortunately she had to move on as she was heading over to Italy. The agency had over a month to find a replacement…. which they did in the last week. Now after a week of training, we have been told that he is not coming back as I am classified now as a complex care! What this means is that zara will now have to do everything, which is to much for anyone especially with no rest in sight. Hang on ….we are in for a bumpy ride ahead!!



By the way, check out the video on home page and the photo’s from the golf….

The below wee video is the radio extract of a surprise visit we had for the golf….

The Neurologist 3 monthly check-up (although it has been five months!!)

Last week we went to the hospital for a checkup. It was such a nice autumn day that I drove there in my wheelchair with Zara and Margot walking along side. Nothing really the specialist can say or do. But he is a nice guy and so we often talk about lots of different things relating to my condition. It is a good way for me to discuss some of my theories and ideas with him to get a medical perspective.

He is keen to introduce the concept of a PEG (Per-cutaneous Endoscopic Gastrostomy), sooner rather than later. This basically means they insert a feeding tube into my stomach which pokes out my side. This is used when your swallowing muscles are affected and it is harder to chew and swallow food. The trick is to not leave it to long…otherwise the recovery from the operation would be hard. Maybe near the end of the year for me!!.
Dealing with the effects of MND

No real obvious progression of my condition, just the legs a little wobbly and the voice a little sluggish. I am still taking the Chinese herbs. I have had a very nasty dry cough for the last week but we have managed to get it under control with acupuncture and juicing oranges and carrots.

By the way I have added the names manually to receive this notice. please let others know as they can add themselves via the website. I can also remove people, if they want.

How is my progress, what is happening to me

It has been a while since I gave everyone a good update

I am relying on the wheelchair a lot more these days as have now realised that I can still walk but only when somebody is holding my arms and them walking backwards. There are going to be a lot more of changes in my body as I spend more time in the chair, but we will face that when they happen. I am trying to keep walking for as long as possible

My voice has been affected for a while now and is certainly getting harder to understand me. I am using voice activated software with a on screen keyboard to do all of my typing and e-mails, but this is getting harder and taking longer especially in the afternoons. So if you get a short e-mail, it is not me being rude just part of the process. There are several things that impact your voice. A weakness of your upper palate which basically means wind goes out your nose! Other areas include a shrinking of your tounge and weakness of breath. At the moment the breathing is still feeling quite strong. The tongue is getting smaller but not at a fast rate-this has only really affected my ability to drink wine, with my preference being now ‘stickies’ as I have found with the tounge shrinking the taste buds have also changed.

The arms and hands are probably the most noticeable change. Although I can move them around they are certainly a lot weaker with the ability to do simple tasks almost impossible. I am now being feed and cannot scratch my head which is probably the most frustrating. But I can still hug zara and the children.

Had my first swim in the hydrotherapy pool and it was amazing. I was able to move around with so much ease. The acupuncture has been helping with my circulation which has meant I have not been feeling the cold so much.

We are updating the website with a video and other stuff very soon.

Real Estate Institute of New Zealand - Charity Golf Day for the Charitable Trust

The Real Estate fraternity of Canterbury have rallied together to put on a Charity Golf Day - "Team Ambrose Event"

If you are not a golfer you could be the sponsor of a hole, this is only $200, contact REINZ Canterbury.

The golf details are:

To be held on 25 May 2007
Coringa Golf Club, McLeans Island, Harewood
Registration 11.30am SHARP

* Team prizes
* Longest drive competition
* Closest to the pin competition
* Watering hole
* Sausage sizzle
* On course refreshments
* After match function, raffle and auction

For an entry form contact
REINZ Christchurch office
Phone 03 3663 660
or
Deane McKenzie
President C & W District Committee
Ph 0274 352 384 or 379 6596


Entries close 12 noon, Monday 21 May 2007


I look forward to seeing some of you there!!

It's all about needles and TV...

The last couple of weeks have been very busy for me, now that the Trust has been set up and running…thank you to everybody that has donated so generously…
So what have we been up to you may ask?
Well, to give you an idea I have now got myself receiving a weekly massage, two sessions of acupuncture a week and have managed to wrangle the system a little and got myself into the Burwood Hydro therapy pool. They say that there may be no real benefit of the hydro therapy pool but surely it is worth trying and giving my muscles some good stretching.
So my week is starting to fill up with more therapies than actually anything else…I will have to be careful I do not wear myself out.
My week looks like this:
Monday – acupuncture Wednesday – reiki Thuirsday – massage Friday – acupuncture and hydro therapy
I have only had two sessions of acupuncture and have found them to be excellent in a way that is very difficult to describe…I will keep you posted. I will get a photograph taken of the 28 needles all over my body including my head!
The wheelchair van purchase is underway and hopefully we will have more to say soon. ..I am looking forward to having this so we can get out and about.
A big thank you to Pete and Helene Harrison, who very generously have paid for the first year’s Sky subscription…just in time for the cricket and sailing…I promise not to watch too much porn!
I have had the Burwood Technology people around and we have set up an automatic remote control that I can now operate the TV/DVD without asking for any help…as simple as that sounds it has given me more freedom than you could imagine!

WOW! What a night ... a big thank you. On Monday we had our first charity event. It was a huge success with around 220 people.

On Monday we had our first charity event. It was a huge success with around 220 people. I should apologise to a lot of our friends who were unable to get tickets as they had sold out in two days. This event was organised by the trustees and they only had two weeks to put everything together. They did a fantastic job and made it the success it was. A special thank you to all of those people who donated gifts and services for the auction-this part of the evening was again, a huge success and thank you to those who won!

I am extremely overwhelmed and humbled by the generosity of so many people. I will keep you posted on the things we use the money for.

I was very tired at the end of it and took the next day of from going into the office.

On the morning of the charity event I had asked my doctor to come and see me. I was developing the flu. This is the public enemy number one for anyone with MND. Your body has to work extra hard to fight this and it can lead to respiratory problems. I am now on antibiotics which has certainly done the job apart from the odd nasty cough. Hopefully will go as smoothly over winter.

I am trialing a new Chinese herb called-BNG which is a cocktail of chinese medicine. I am very skeptical that this will do anything, but I am using the left overs from Paul Blacklow. I have about two months worth, so we will see what happens.

I have the new bed arriving for smaller people!

We have been trying a hoist out this morning. This will enable people to move me from chair to bed with some ease by using a hydraulic arm to lift me in a sling.

I am not fat!-broken equipment and the wrong size bed!

They said it couldn't be broken-but yours truly has managed to break the wheelchair. Apparently I have stuffed the drive motor! ... maybe I should stop trying to go cross country. See the photographs for my new temporary wheelchair (the office chair)

I have been trying a new bed ... which I have now found out that the occupational therapist ordered the wrong mattress ... apparently the one I have is for really fat people! ... I need a much softer than one. I need to get the right one as turning in bed has now become a real mission. With all the noise I make, I am waking zara up at least 3-4 times a night ... and as you can imagine it can be frustrating for both of us! Hopefully with the correct mattress we can all get a full night's sleep.

I have been doing too much lately and have developed a sore throat. Not too bad you might say, but I need to be careful with any kind of infection as it could also lead to a chest infection which is the big enemy! This morning I woke up coughing, spluttering and gasping for air ... which is all because I had a scratchy throat.

Paul Blacklow's- funeral

All of us, apart from Margot went to the funeral which was held in the school hall, Wednesday 14th March. It took a lot of concentration and controlled breathing not to start crying. There is an unusual side effect of this disease that you can get uncontrollable laughing or crying and once that starts it and can get quite embarrassing. It was a very good service with a huge amount of people making the effort. It was certainly good to see how he planned everything that he wanted and gave me some fantastic ideas for mine. It was very difficult to watch his mother walking out behind the coffin ... that for me was the most upsetting. On the way home, Harriet asked what did Paul die of ... and we are told her that it was called Motor Neurone Disease, which is what daddy has. You could almost hear her brain absorbing that information, but not quite sure what to do with it.

A fellow fighter dies.

It is with great sadness that Paul Blacklow past away peacefully yesterday morning around 6 a.m. Paul and I were fighting this disease in our own way but always sharing our information and ideas. He was of great inspiration in taking on the battle head on. He was a year behind me at school (St Bedes College) and leaves behind him a young family very similar to myself. Paul had Motor Neurone Disease for 4 1/2 years. I am actually happy for him, now that he is free of his everyday struggle. I am sad for his children.

We are launching a fund raising event at the Christchurch Casino.

We are launching a fund raising event at the Christchurch Casino on the second of April - a Gourmet Dinner - A Taste of Canterbury: a gourmet experience of Canterbury food and wines. Ticket prices are $65 per person . The money raised will go towards a new wheelchair van. For more details please contact Greg Horgan (greg@mbcook.co.nz).

The new wheelchair arrived today.

The new wheelchair arrived today and it is very sporting ... it even comes with hydraulics to make the ride smoother. We will now be able to have running races in the park. I have now decided to start wearing foot braces so that when I walk my foot will not drop and catch. This hopefully should stop any potential falling. It is like wearing ski boots in the summer including the tight feeling you get across the top of the foot!