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.

Smooth moving

I'm bloging from the old couch in the new pad, and we are pretty happy about it.

The move was a special event. On site we had the big Outdoor Living truck, the little Outdoor Living truck, the Ross family ute, Smithy's big yellow van and a fleet of back seats and boot spaces. Additionally Stacy and I were joined by 24 fired up friends and family for the move.

It was a thing of beauty, the only way to move house. Our first helper Richard was on the job from roughly 9:45am and the whole house was empty and locked up just prior to noon. It was great to be able to allocate people to single area or job and let them run the show. Stacy had some significantly more competent help with packing than I can provide, and we had the bodies on hand to get the oversized couch out and over the rail without too much drama.

The receiving end team worked wonders with maps of proposed furniture lay out, name tags and a great lunch spread ready when the worked shifted over to the new house. By the time Stacy and I arrived at our new home the lounge room was set up down to DVD's in the case, the books were quickly filling up the book case, the kitchen was set up and Mat and Al were still working on reconstructing the futon.

Potential loose moments from the day where when the neighbour's washing machine made it all the way to the ramp of the truck before being picked up as an impostor, and Graham's various attempts to climb out of the fairly challenging Crawford St driveway in the tricky ODL ute on a wet Sunday morning.

Overall it was a great effort and the whole operation including plenty of unpacking, ute and truck returns and lunch lasted around 5 hours. Thank you very much to everyone who got involved on the day, you helped take a lot of the pain out of what is usually a highly unenjoyable experience.

Pictures and videos to come once Stacy is happy with the final decorative touches.

Love to all.

Mike and Stacy

Moving and quality messages

In the last week we have received some excellent email and facebook messages. Thank you very much to those folks who have poured their thoughts and feelings out to us. It has been very touching, tears on the couch on more than one occasion this week. Thanks.

Now enough of that we need some boxes moved.

We just got the word today that we can get the keys this Saturday for our new pad. We are very excited.

So we have the Outdoor Living fleet scrambled and ready for Sunday morning. What we need now are bodies and brains.

If you are available we would appreciate your help on Sunday morning. The plan is to meet at our house - 15 Crawford St, Ashgrove at 10am. Load up the trucks and head over to the new pad. we might fire up some lunch/afternoon tea after that and then go ahead enjoy our life.

Give me the heads up if you are planning on getting involved. 0413 419 274, big_bad_sasquatch@hotmail.com

Cheers folks

Mike

"Nothing to say"

Today Stacy and I went out to lunch at a cafe.

Lunch is a good thing however it has changed over the last year. I wonder if you can imagine the experience of going to a public restaurant to enjoy a meal without the ability to walk to the table, pull your chair in, lift or hold the fork or wipe away the extra ranch dressing from the corner of your mouth. I don't think I can.

This is the reality of Stacy's dining experience. It is a daily display of courage that I am regularly impressed by.


Today at lunch we sat next to a couple who looked like they came out of a Sopranos style TV show set in Florida. Miami Sopranos - white pants on the man and woman, enough gold to get the job done and a relaxed authoritative air. Late 50s/early 60s, sunglasses, you with me?

After we had ordered and before our food had arrived Mr. Soprano Miami came over and jammed a crisp 50 into my hand. "Nothing to say, nothing to say" was what he said as he left my hand and the $50 note intertwined. "How are you sweetheart?" he said as he touched Stacy's shoulder. "Good thank you, thank you for that." Stacy replied."Enjoy your lunch" said the Aspley mafia man. They soon drove off giving us a jovial and friendly honk from their white Mercedes-Benz, it matched the pants nicely. 

Its was really good. Kindness and consideration, we can't get enough of it.

One of the most enjoyable aspects of the experience was the contrast to our meal time interaction with Jeff in Reno (see 'Anybody can run on a fine day' from July). US Jeff talked to us for 20 plus minutes about his medical experiences, he spoke of healthy state of mind, affirmative language and a continued competitive attitude. It made us feel positive and supported. Aussie 'Aspley mafia' injected himself into our day for 20 seconds with a $50 note and a robust caring word. He made us feel positive and supported. Nothing to say, and yet so much communicated.

It is so wonderful being on the receiving end of peoples consideration and generosity. I have the feeling though that it is also excellent for people to experience the everyday courage that is Stacy eating lunch at a cafe. 


We hope all is well with our friends and family.

Mike and Stacy

Well hello

G'day folks

I'm going for bullet point format.

• Montana was excellent. Really good to spend time with Dave, Steph and plenty of friends.
• We are home from the states. It is great to be in our old apartment, we love this place.
• Our old apartment is getting old, too many stairs, not enough patio, you know how it is. 
• We have found a new place which we think will be great. It is flat with no steps from the garage into the house, and from the house out onto the patio and the yard. It is big with 3 bedrooms, 2 bathrooms and a couple of living spaces. Plenty of space for visitors, check your passports people. 
• We are continuing with the home-care aspect of the treatment from the clinic. Stacy gets 5 or 6 injections a day from nurse Neild here, as well as a battery of oral medicine. The injections particularly are getting old quickly, however they are hopefully working away at resetting Stacy's immune system. 
• Times are getting harder emotionally for us however we are made of stern stuff.

Lots of love.

Mike and Stacy