Oh, one other new thing.

Puppies!!!

Yeah so four or five weeks ago we got a couple of dachshund dogs. Evie turns 4 in July and Greta turns 2 in June. They come from a loving home which sadly wasn't appropriate for them anymore. Luckily for them and us, we do have a home that is appropriate for them.

They are a real joy to have around the place. They enjoy a full speed run around the back yard with me and regular cuddles on the chair with Stacy.

Expect to see the girls in many of our photos in the future.

Hello out there.

Ummm, so its been a while and there has been a lot going on.

- Christmas
- Liz in town
- House drama
- A New Hope
- Return of the Dave


- We had the Neild family Christmas over at our place this year. Charolais' head chef Stacy got some big plans for the menu for the day and the resident sous chef struggled to enact the vision.

Some success. It was a enjoyable Christmas at home this year.

- For a few weeks in January child super star and close friend of Stacy, Liz White squeezed us into her global book signing tour schedule. She visited during a period of near constant rain and we all had a very nice time.

Liz spent a lot of time investigating various Australian treatment options for Stacy and we watched a bunch of movies. We may have also eaten a lot of fancy breakfasts. We love Liz and it was great to have her here. There were plenty of tears and smiles, its the usual way with Stacy and Liz.

This is the best photo possible during December and January in Brisbane.












So here is a photo of Stacy and Liz that always makes me giggle a little.


















- In February the people who own the house we rent, and love, needed to sell it. Yikes!
This was not a good thing for us as we are really feeling very comfortable here and the house hunting process is particularly arduous for us given our specific criteria. For two weeks there was some serious scrambling going on with various ideas proposed and pursued.

The outcome is that our parents and our good friends purchased the house and we are now going to rent it from them. Outrageous! A spectacular solution that seems to leave everyone involved in a advantageous position. Yeah family.

- We are doing something new from a medical perspective. Liz came across a new avenue to pursue during her investigation of Lyme disease in Australia. We have been working in conjunction with a doctor on the Sunshine Coast to pursue the this new option.
I think this probably requires a whole post of its own so stand by for that one. If you want to do some general reading then these are some options.
http://bacteriality.com/about-the-mp/
http://www.ilads.org/

I'll add a lay version of all this soon, honest.

- The big Dog, the man of the mountain, Dave Frey Senior is in town and living the dream. He has spent plenty of time in the kitchen, plenty of time in the garden and plenty of time making Stacy laugh. We've been loving it and feel very blessed that Dave is able to stay for a couple of months.

So that is some of the big stuff that has been happening over the last few months. Sorry for the lack of posting. I haven't wanted to write as a lot of the time my frame of mind hasn't been at positive as I want it to be.

Things are very hard for us at the moment. Getting through our days is hard and getting harder. Stacy's condition is progressing and she is experiencing fairly consistent pain and discomfort.

Its been really great to start working on this new medical idea. Despite the fact that it is challenging Stacy's body and generating some of her discomfort the fact that we are doing something is providing some emotional buoyancy.

Righto, i'll write more frequently. We love you.

Mike and Stacy

Big Sky 10s

A special day in the sun for our friends and family - the 2010 incarnation of the best fund raising Frisbee tournament this side of the Big Sky state herself. Big Sky 10s.

The shade tent by field 3 where Stacy spent much of the day hanging out with friends and occasionally checking out some Frisbee action.

It was excellent to spend the day with all my Frisbee mates, including the 20 or so friends who traveled up from Newcastle, Sydney, Canberra and Melbourne to play on the day.

 








There was plenty of great action on the fields during the day. Thankfully the good guys won and Stacy's All Stars kept hold of the Big Sky trophy.

The event was another sensational success on many different levels. Stacy and I feel so appreciative of the wonderful community that we are surrounded by. Particular mention needs to go to the masterminds of the event, Sandra, Gen, Tony and Mat. 

I know I'm not able to capture the day appropriately through words, so I'm hopeful some photos from my good friend Hannah will be great for those who couldn't make it.

A day to remember. Thank you to everyone who contributed.

More pesky angels

Stacy and I went and watched a movie this week. Stacy enjoyed the Eat, Pray, Love novel when she read it a couple of years ago. As the movie is now available to be enjoyed in living colour we decided to check it out.

As we cruised out of the theater into a bustling Friday night we ran into our mates Stu and Maylin. Stu was talking in a jolly English accent and gnawing on a big fat US burger, May was weathering the wet conditions with expected grace and charm, despite having a hand dipping into a large and incharge bowl of chips.

Stu looked relieved that it wasn't him exiting Eat, Pray, Love and I don't think he'll be heading out to get the book after we finished talking about it.We hit the road and Maylin hit the chips.

The next afternoon Mr and Mrs Neild Senior were over and we were all dusting and tidying our little hearts out. It was a very productive afternoon, yeah, cleaning! Mid way through the afternoon Dad came back in from a run to the bin with a special delivery package.

The 'Eat' part was on Stu and May last night. What a great Saturday afternoon gift.

We are so loved and supported by all our friends, and the kindness that comes flowing our way is really important to our continued healthy state of mind.

Its impossible for us to record all the beautiful moments of consideration that we experience however every now and then its great to celebrate publicly.

Thanks for everything you give to us folks.

Mike and Stacy

Big Sky 10

Over 4 hectic weeks in late 2009 our extended Brisbane family planned, prepared and delivered 3 separate and fantastic fund raising events. Stacy's Starlight mates organised a themed trivia night which you can read about in the following blog post.

Starlight - http://stacyneild.blogspot.com/2009/11/what-weekend.html

Stacy's 21 year old adopted little sister Liela put on a fun run in the Roma St parklands that was enjoyed by around 200 people. There is a reflection in the link below.

Fun Run and Big Sky 9s - http://stacyneild.blogspot.com/2009/11/guest-bloggermike.html

Kicking it all off on the last weekend in October last year our Frisbee friends, Mat, Sandra, Gen and Tony coordinated Big Sky 9s, a single day frisbee tournament including roughly 150 frisbee players.

It was a spectacular month of community support. Stacy and I felt so loved at the time, and continue to feel loved now. The money raised allowed us to take our recent big trip over to the States to visit Stacy's family and the spend 8 weeks receiving treatment in Reno. We also went on a couple of cheeky trips and upgraded the 6 year old $150 second hand TV we owned.  Excellent.


It is one year later now and the Frisbee community is coming together again to celebrate and support Stacy in her battle. Big Sky 10 will be run on October 30th this year. There are already over 100 Frisbee players registered on 12 teams with more to register in the mext few weeks. The Gap Soccer club grounds are getting plenty of rain which will hopefully cooperate and not rain on Saturday the 30th.


I recommend heading over to the Big Sky blog to check out all the info and it's worth scrolling down a bit to see a few photos from last year. 
http://bigsky10s.blogspot.com/

All our non frisbee friends are invited to come on the day and enjoy the action, there will also be a social function later in the evening at the club house next to the fields which everyone is welcome to attend.

While the heavy planning and organising is being done by the Gen, Sandra, Mat and Tony, 3 of these folks are playing in the tournament on the Stacy's All Stars team.  Consequently there are some administrative tasks that will need to be completed on the day that Gen could use a hand with.

This is a call for our mates who wont be playing on the day to contribute if they would like. I understand the kind of things that could be helped with are raffle type stuff (in the lead up as well as on the day), collecting team fees and registration on the morning of the tournament, other general admin gear - i'm really to sure. Gen however is sure and would, i'm sure, appreciate some help.

If you would like to get involved the send Gen an email or give her a call on g.healy@sph.uq.edu.au, 0401 889 453

Stacy and I are getting really excited for Big Sky 10s (maybe me a little more than Stace) and we hope to see many of you on the day to enjoy the action and support Stacy's All Stars in our bid to defend the title.

Pesky angels

There they go again, just storming in without asking, like they own the place.
Rearranging furniture, spit polishing all the shiny things that have gone dull.
Piecing together all the broken parts with wads of celestial chewing gum and golden thread.
I tell you these angels are pesky ones.

How are you really doing?

Many people have been asking me 'how are you?' I say, 'good thanks' and we move on with our day.

The reality is different however and I thought despite how hard it is I should tell you how I'm really doing.

The things I don't say to you all when you ask me how its all going are:
Today like everyday at the moment is a struggle to get through.

Having MND is like being in a glass coffin.

I can see what is going on in the world but I cant participate. Mike and I have all this time on our hands which I would normally fill with activities like sending emails or organising the house, doing craft, etc except my hands don't work. As a result I have all this time and all these things to do but I cant do them. I used to participate in life and now I feel like a spectator.

You can imagine how frustrating that would be. My voice doesn't work as well as it used to so sometimes people don't understand me. It is now hard to hang out with friends or call people over in the states as talking on the phone is difficult. Not being able to express myself as quickly and clearly as I want to makes me feel a bit cut off.

I think it is impossible for people to understand what my days are like.

I still get out of bed everyday and go out into the world. I still laugh at funny things and definitely haven't lost my ability to enjoy tasty food.

So how are we doing really? As good as we can do.