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.

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

Movin' on, movin' up.

It is clearly time to write with an update as people are beginning to send emails asking if things are ok. Excuse the tardiness.

We went to Reno.

Visited Lake Tahoe and Virginia City.

Liz came to stay.                                                                              

Kelly came to stay.

Shannon and Tawnya also came to visit however the camera must have been on charge that week. Sorry.

Stacy got a lot of injections, but kept on smiling, most of the time.

We received a lot of encouragement.

 

 

And finished up the treatment at the clinic a week or so ago.

As you would expect Stacy made as many good impressions at the clinic as she did facebook friends.

We are now back in Montana resting up and preparing for the trip home. Relaxing on the deck, hanging out with friends, rehabilitating small animals and driving fast cars. You know how it is.

We are heading home to Australia on the 11th of August - next week. We have mixed feelings about heading home as we will miss all the very important people over here in the states. I don't think we are able to sum up this trip easily and it will take some time for everything that has happened to download and make sense. We are hopeful that Stacy's condition will improve with the ongoing treatment as we wait along with all of you to see what happens.

Thanks again for all the love and support that has been sent our way, it makes a great difference to our days.

Now on to our next adventure.

'Anybody can run on a fine day'

Despite the set backs, regardless of the obstacles, and in the face of what almost feels like systemic, organised resistance Stacy and I have finally found a good non-chain breakfast restaurant. Oh yeah!

The Stone House Cafe is a top notch little restaurant with great food, relaxed garden style setting and apparently divinely inspired customers.

After having a great meal there last week, this morning we headed back out to the cafe with Deb for a Sunday morning breakfast. Excellent. After we sat down and ordered we noticed a couple of blokes who had finished their meal a few tables over. I noticed them because the waiter said "hang loose and enjoy the shade fellas". Sweet US vocab.

We ordered and enjoyed, relaxed, slowly savoured our meal and soaked up the excellent Sunday morning - being outside has become an appreciated novelty for us after nearly two months sitting in the clinic getting treated.

After we had finished eating one of the blokes from the 'hang loose' table made his way over to our table and asked if he could sit down. Jeff introduced himself and said that he noticed that Stacy is a bit ill at the moment. Jeff is a 50 year old Reno local who works as a photographer. He has eyeglasses and likes to wear a baseball hat on his Sunday morning.

While talking to Jeff we found out that he had Lyme disease and ten years ago he experienced a range of symptoms similar to Stacy's current condition. He said that he saw us walk in and it reminded him of the way he used to walk around. He lost his voice and his ability to swallow effectively at the height of his symptoms.

This morning Jeff was a healthy looking and highly functioning breakfast eating human. He really wanted to come over and tell Stacy that she needs to continue fighting, believing and participating in her treatment. She can get her solution and she can be healthy again. Jeff was a marathon runner and a firefighter and he said during his illness his mantra became that "anybody can run on a fine day". I took this to mean that its the people who keep running when the wind blows up and the rain sets in who make a difference in the world. Jeff told Stacy that its not firemen who follow their training and fight fires who are heroes, its Stacy who keeps battling everyday, and insists on living her life and eating her cafe breakfast who is a hero.

It really was a divine experience for us. We are very grateful to Jeff for coming over and injecting himself and his story into our day.

As we were walking back to the car Stacy said to me "Maybe that was God saying shut up and start believing". Meeting Jeff was a great influence on Stacy and gave a real boost to all of us as we move towards the next phase of our treatment.

Great breakfast. Loved it. Independent restaurants people, the way forward.

Thanks for all the love,

Mike and Stacy

Bailing out, digging deep, shaping up, battling on, pushing through and getting it together

G'day out there in Stacy land.

I hope all is well with you at the moment.

This week we are in Reno, Nevada. Not surprised are you, well I guess we aren't either. As I write we are at the end of our 7th week here in Reno attending the Sierra Integrative Medical Center. We will complete this week of treatment and then decide how much of next week we will spend down here. Yesterday we thought it would only be a couple of days of next week however after today we may be looking at the whole week. The situation in regards to duration of treatment has been in flux for the last month or so.

Today was a rough day, however that isn't totally representative of our time here. Whilst the overall experience has been tough most of the days themselves haven't been overly challenging.

Stacy's physical condition:
Her blood seems to be much healthier, less immune hyperactivity, less dehydration and oxidative damage (related to chemicals in her body) to her red blood cells. Better liver function, however there is more improvement needed with this. Her allergic reactions seem to be much less active as well. Her recent vital capacity (lung function) test seemed to show that she is stable in this area - we will take stable, stable is just fine at the moment.

Her speech and total body motor control seem to be continuing to progress in line with the last 18 months. It is hard for us to assess this really well, however we feel like most movement tasks are harder now than they were when we left home in May.

Stacy's mental and emotional condition:
I'm just a young man with a less than extensive experience in the world. Stacy is by far the bravest and toughest nut that I have met. She finds herself in an intensely painful and scary situation and yet she is constantly trying to protect the rest of us around her from the pain and fear. She fights much of the mental and emotional battle by herself. Stacy has never been shy to ask for help and is keen to share the load of the experience however she is constantly aware of protecting others as well.

On Monday she encouraged me to buy a piece of pizza for a homeless man who she has seen wondering the streets of Reno. I was quite resistant to the idea though shyness or fear or something. I did however end up getting the pizza slice and drove over, found the man and gave him the dinner. He was very happy and appreciative. It really was a divine moment. Impossible to recapture through description, it was intensely emotional for both of us.

Stacy is still a wonderful person despite the arduous nature of your life at the moment.

The challenge is harder now than it ever has been. We will continue to face it every day. We are hopeful for the next few months.

Stacy loves you all and hopes you are all making the most of your days. Send her some love in the comments here or on facebook or however you normally keep in touch.

Lots of love

Mike

Mind Meld~

If I were french fries you would be ketchup.
If I were a meat pie you would be my crust.
You're the flip to my flop,  the ying to my yang.

You are my favorite part.

Some people look a lifetime for what we have.  I love you more today then yesterday.

WTF - What The Fong.

That's What The 'Dr.' Fong for all of you who aren't in Reno with us.

This afternoon Debi was on a roll talking about when Stacy's cure from MND sets the neurological world on fire and she goes on to write a book about her experiences and then this book gets picked up by Hollywood and made into a feature film. Just quietly I think Debi liked Julia Roberts as a candidate to play her.

Stacy and I carried this on and were talking about who would play all the parts in the movie of her fight with Motor Neuron Disease - Gambling in Reno, a high stakes medical adventure. The highlight of this is when we decided that the guy who plays the Asian gang boss type guy in 'The Hangover' would be best suited to play the head doctor here at the Medical Centre, Dr. Bruce Fong DO, HMD. WTF

What the Fong?!

I'm proud of us for still having a great time and laughing about something everyday. We have had some hard days over the last year and a half, this week included however I don't think there has been a full day in which Stacy and I haven't been able to laugh together. Plenty of half days like that but maybe not any full days. We are blessed by that.

Righto so here is what is going on. Stacy's blood test for Lyme disease came back last week and it was positive. This means that there is a bacteria infecting Stacy's cells that is very hard to kill and causes lots of problems. Many people at this clinic have Lyme disease. This clinic seems to have worked out a way to kill Lyme disease, we think they will do that for Stacy. This could be extremely good.

Other things that have been identified are that she has some heavy metals in her body and a range of food and environmental allergies. The clinic also has a long history of successfully dealing with these issues.

Her treatment at the moment continues to involve daily detox IVs at the clinic, plenty of oral supplements, a battery of subcutaneous and inter-muscular medicine injections delivered both at the clinic and by Dr. Neild at home. She is also continuing with 'the push' which is the nightly injection of medicine that induces some kind of major immune system reaction characterised by shivers and shakes, muscle tightness and intense ache and a fever. She also intermittently during the week does some massage, some lymphatic drainage therapy and some liver cleanse theory.

There is a new therapy on the horizon which they call neural therapy. This involves a series of acupuncture style (along meridian lines) injections of medicine into her lower back and legs. This is designed to open up the energy pathways for her legs and improve the ability of her nerves to synapse. It will involved around 100 subcutaneous injections during the session.

The treatment continues to be hard work physically, emotionally and mentally. I've been working harder this week at being excited about the therapy rather than being skeptical of the therapy, its been good.


The theory that we are working with is that by dealing with all the imbalances that are present in Stacy's body - dissfuctional liver, hyperactive allergic reactions, confused immune system, heavy metals and Lyme disease - she will be in a good state of general health. Once all these blocks to healthy function are removed then her body will be given its best chance to holt or reverse the degeneration that she has experienced over the last 16 months.

Currently we haven't seen any signs of that reverse yet. We do believe that this clinic will be able to successfully deal with everything they have found. The Fonger hopes to see some clinical (functional) change before we leave in the next couple of weeks. We think that we are in the right place for this to happen.

Tawnya has gone home to Great Falls. Shannon one of Stacy's college room mates, bridesmaids and general sister from another mister has come and gone. The presence of these intimate friends has been excellent. Thanks girls, nice work.

Sorry that you have to put up with me writing instead of Stacy. She is still firing along with wonderful moments of Stacyness (caring for and encouraging the other patients at the clinic, achieving and verbalising moments of uplifting perspective, humorously negotiating and disarming the potentially embarrassing, uncomfortable and disheartening aspects of her daily life and making the people around her feel as though they are uniquely special and worthwhile) she just doesn't have the emotional energy available to write them up on this blog.

Lots of love to you all. Keep it coming right back over.

Mike and Stacy

Time for an update

G'day folks.

Its Sunday evening after 2 and a half weeks here in Reno. It has been a pretty nice weekend. Unlike last Saturday this week Stacy woke up feeling pretty good and refreshed. We have had a couple of nice relaxing days enjoying the excellent weather, eating out and resting up. Stacy has punched a 2 top quality afternoon naps, we think they are pretty important for her to catch up on the week of treatment action.

At noon today the T Ray, Junior Klein, the sweetest young lady ever to come out of Great Falls high Tawnya Gilchrist arrived in town. Tawnya is Stacy's great mate from back in the school days as is going to stay with us for a week and help ease the experience for us all.

We are excited to have Tawnya in town for the next week.

Last week was a tiring week. We ramped up the treatment intensity which was hard on Stacy's body due to the induced fever reaction that she experienced nightly. We are still waiting for some test results to come back however we are getting into the rhythm of the treatment and expect a similar week this week. We still feel like there is value in the treatment and are hopeful that after we have survived our time here that Stacy's body will be able to do some healing on its own free from toxins, pathogens and whatever else is disrupting her cells.

Thanks for all the love and care that has been sent our way.

Best wishes, Stacy and Mike

 "Now get out there and make a difference"

Treatment - Day 7

G'day friends, family, fans and followers.

It is Friday evening, the end of a week and the end of our 7th day of treatment at the SIMC in Reno. Overall we are going good, we've got one brave girl on our hands here people.

The first few days of our treatment focused on detoxification of Stacy's body, with extra attention on her liver. It was also a time of testing - blood, excretions and lung function.
Some results from this time are:
-Stacy's Liver is not able to keep up with its filtering job, so her red blood cells and her plasma have accumulated various imperfections.
-She has some small tube like bacteria in her blood called spirochetes. These are linked to a range of diseases - fire up google if you are keen.
-Her immune system is not functioning effectively. In some aspects it is not reacting to destroy antigens as it should, and in other situation it is hyper sensitive to some antigens and is over reacting and wearing itself out creating a response.

-There are still tests out for parasites, viruses and diseases.
-Her vital capacity (functional lung volume) is at the same level as it was a month ago.

The second phase of the treatment started yesterday and it is full on. At the end of each day of getting IV treatments, pro neural system and anti virus injections Stacy is given an injection of something that is designed to reset her immune system. It generates an intense fever that so far (2 nights) has only spiked as high as 102 degrees F, however we are only at Level 1 of 10.

It is a pretty rough ride. It takes about 45mins from the time of injection to start and then it starts quick. So far it has been characterised by 45mins of extreme cold feelings coupled with body stiffness and shakes that rattle her teeth. Then it fires up a fever for about 2 hours that leaves her exhausted and sore. In the morning she is very stiff and moving is harder and more painful than usual. It is called the Push and most of the patients here get it. Stacy will have it everyday while she is here. At this stage we expect she will have 25 pushes over the next 4 and a half weeks.

Now Stacy has never delivered a child however I get the sense it might sound something like the moans, groans and snapped instructions that we have heard over the last couple of evenings.


The Push coupled with a range of detoxification techniques are designed to kill bacteria and infections, and reset her immune system so that it can find and recognise the cause of her MND symptoms and correct the problem.


That is the plan at the moment and time will tell how effective it is for Stacy. Similar plans seem to be very effective for other people here.


Other stuff:

Check out this excellent effort regarding the Great Falls fund raiser over at Cindy's blog. http://cindycieluch.com/blog/?p=4891
Love your work Cindy, well done.

Some of Stacy's close mates are coming down one at a time to do some nursing. This is good, we've worked out that we can use one extra set of hands when it is one of Stacy's intimates who can get in on all the gritty aspects of our current situation. We are looking forward to visits from these girls.


As I said overall we are going good. We feel like we are doing something, and that something will be good for Stacy's body. Thanks for all the love.

Mike and Stacy

Speedy update.

Hello friends and family. Mike on the computer for an update.

Its a bit late at night for cheekiness and there are many topics to cover so I apologise in advance for the lack of creative prose. The plan is to dedicate full posts to the following, however in the interim here is what has been going on.

Great Falls was pretty good. It was a higher intensity week then we are used to back in Brisbane due to the large number of people that we wanted to spend time with during the week. Consequently it was both very enjoyable and quite tiring. I think by the time we left for Nevada we were more tired than when we arrived after our 26 hour trip from Australia.

Thanks very much for all the folks who traveled to come and see us. We enjoyed all the meals, rides, chats, babies and quiet times on the couch.

The fundraiser held on the 21st of May was a major event. I'm hesitant to define it by the number of people who came, amount of donated items, hours of preparation and funds raised as these amounts don't add up to the positive feeling and love that Stacy and I experienced from the event. It was a great success and we are very thankful to everyone who contributed.

Yesterday we flew down to Reno from Great Falls via Seattle. It was a pretty good trip, I think the last big trip was still in our memory so this little one didn't seem too bad. We have our rental car, we are in our hotel suite (both are good) and we are beginning to get our bearings in Reno. We arrived in at the hotel around 10:30pm and were up at 6am to make our first appointment at the clinic.

Today we spent our day at the Sierra Integrated Medical Center. Our description of the day would have been fairly different depending on when you asked us. It feels a little unfair and inaccurate to report my feelings about the day and the clinic now as during the day I felt both more positive and more negative at different times about the whole thing. You can consider that as you read the following.

I don't think we know much more about the big picture of our situation now than we did 24 hours ago. We have more information about some of the details however in terms of knowing how long we will be here, how likely we are to see a positive response for Stacy, what is going on inside Stacy's body we are still pretty much in the dark.

Today we drew a lot of blood and organised a really broad series of tests for that blood. Toxicity, chemical levels, lingering immunisation information, parasite existence, liver function, etc, etc. We did an evaluation of the energetic levels of Stacy's internal organs using key points (some word starting with 'M' should be here) on her hands and feet. We had a long consultation with the big wig Dr. Bruce Fong, D.O. H.M.D. Finally Stacy started some treatment which is standard for all patients at the center - an hour and half drip fluid that is designed to cleans the liver, and 2 injections that do some other stuff.

The plan at the center is to investigate what is happening in Stacy's body systems, to restore balance to her lymphatic, endocrine and immune systems and then see if in that process some negative factor that is damaging her body is removed. A bit of swinging in the dark really however with a condition in which the cause is unknown I guess there aren't many other options.

We are back in tomorrow for some more transfusions and injections.

Reno the town is full of restaurants, casinos and hotels, it is not overly pretty. It is however in a majestic setting. There are two very large snow covered peaks rearing up into the clouds close to town. Apparently the lifts only closed a couple of weeks ago and some people are still hiking up and skiing down, hectic.

We have some photos and plenty more stories to come. Sorry for the limited updates, Stace and I were saying tonight that just getting through the days are using up a lot of energy. We have had 3 pretty big days though - last day in GF, traveling, first day at the clinic. I hope that we will get into a routine soon. Liz does arrive in 2 days for the weekend.

Thanks very much for all the facebook, email, phone and in person love community. It has been great, stand by for a post about one such communication that blew us away - paper airplanes and everything (i'll let the photos do the talking on that one).

We love you.

Mike

We made it!

After 25 hours on the 'road' from Brisbane through LA, Salt Lake City, Great falls we made it to Chili's restaurant, and found ourselves set up with margaritas and meals the size of our heads. U.S.A, U.S.A, U.S.A.

Thanks very much to everyone who has sent us best wishes for our travels, it was nice to know so many people were thinking of and praying for us.

Stacy travelled really well given the challenges involved. She even had to be shipped off like cargo on a 2 wheel trolley/dolly type number. If we had the face mask it would have been a sweet Hanibal Lecter moment.

We slept for almost 14 hours last night with a 4am wide awake hour in the middle. Today Stacy is getting around pretty well and we are happy with her energy levels. It is beautiful here in the Great Falls early summer. We are looking forward to quite a few long and lazy evenings on the freshly renovated back deck.

Elk burgers and Ceasars for dinner tonight - yeah.

Lots of love to our extended family.

Mike

What is going on.

G'day all, Mike here guest posting.

I'm here with a general update and Stacy will be back with more from the tear jerking and inspiration collection soon. She gets all the good jobs.

Righto so the matriarch, the big momma, the lady in the red hair, Debi Frey has been in town for the last 4 weeks. It has been very good to have Deb on board helping out around the house and I'd say we are all in fairly good emotional condition. That might be speaking a bit out of line, however I'm going to keep a positive frame of mind on this one.

We are heading over to the states on the 16th of May (two days time) and we think the trip will be both very tiring and also fairly enjoyable. It will be a mixed trip with a visit to Montana to spend some time with family and friends, quickly followed by some time in Reno, Nevada at an alternative medicine clinic.

Many of the doctors and health professionals are quite concerned about us making this trip to the states on the grounds that Stacy's condition is progressing and she is moving into a stage where she will require regular assessment of her breathing and swallowing function. The reality is that if this trip was purely of a social nature we would probably have decided against it as it does pose a risk to Stacy's overall health.

The situation is though that we feel the need to do some further investigation into the treatment of Stacy's condition. As such we are taking the risk of accelerating the progress of Stacy's decline against the potential good news we may find at this clinic in Nevada. Details about the clinic can be found at http://www.sierraintegrative.com/

Stacy's incredible ability to synthesise frightening new information about her own mortality into her world view in order to make major life decisions is astounding. It took her around 26 hours to incorporate the information that a trip to the States for more than a month could be very dangerous to her health into her understanding of the world. She then considered the situation she found herself in, balanced the risks and made her decision. The brilliance of this is that once the decision was made we were back to enjoying our evening and living our life.

Sometimes you make a decision and then continue to remake the same decision in the following days and weeks. This keeps you in a state of flux that inhibits your ability to live your life and enjoy the world. Stacy and I have learned how to make life changing decisions and then leave those decisions made so we can go out and enjoy an iced coffee in all its creamy deliciousness.

"Mike I've worked it out, I can either stay here and die, or I can go over there and try.

Do you know what movies are on tonight?"

So we are coming over to the states and we'll see what comes of it. One thing that we know will come of our trip to the states is a Montana sized fund-raiser: http://stacyneildbenefit.eikonproductions.com/

Team Stacy North America branch have been working overtime and it seems to us that a huge event is the direct result. We aren't really sure what will be involved with this benefit night, however we do know that Tawnya did her TV interview today, and that through the class of 2000 Great Falls High 10 year reunion facebook page the news of the benefit has gone viral - go bison.

Ok, enough out of me. I'm sure Stacy will be back here soon to share some insight about the beauty of life or something. She's sitting next to me reading some Steven King short stories so I'll be interested to see how she works that in with her blog theme of positive thinking and floating in oceans of faith while dreaming about running.

Keep the email love coming, we are both regularly buoyed by the beauty and eloquence of our friends and family. 

Love

Mike

Finding Faith~

Just today I was discussing with Mike how I feel like my faith is wavering. I decided to come home from lunch and google search ALS miracles when I stumbled on this:

"Faith is a state of openness or trust. To have faith is to trust yourself to the water. When you swim you don't grab hold of the water, because if you do you will sink and drown. Instead you relax, and float. And the attitude of faith is the very opposite of clinging to belief, of holding on. In other words, a person who is fanatic in matters of religion, and clings to certain ideas about the nature of God and the universe, becomes a person who has no faith at all. Instead they are holding tight. But the attitude of faith is to let go, and become open to truth, whatever it might turn out to be."
Alan Watts.

Maybe sometimes faith finds you. I thought it was worth sharing. 

I had a dream~

Last night I had a dream, it was the most amazing dream the kind of dream were you know your dreaming but it feels so real.  I was in a city somewhere waiting for Mike, in my dream I knew I had MND but when Mike arrived we decided to walk home even though I knew I couldn't. 

As we began to walk I noticed that Mike wasn't helping me.  I realized I was walking on my own, no limp, no foot drag, no assistance.  I couldn't believe it, the sensation of walking was exhilarating, I began to cry, then run, then skip.  I spent  the rest of my dream walking back and forth on this invisible street in my mind.

It was so real, I half expected to be able to walk when I woke up.



I hope I have this dream again.

Update time~

So I realized it has been awhile since my last post, I'll fill you in on what's been happening. 

Vanuatu was great however a little sad.  I am so used to being active on holidays it was hard for me not to be able to go hiking, snorkeling, cliff jumping ect.  I'm still working on catching my brain up on whats happening with my body.  Mike and I still enjoyed ourselves it was just different.

After Vanuatu we came home for a few days before heading to Sydney to pick up Liz who flew in from NY for a week.  We had a blast with her here, lots of laughs.  It makes such a difference to have a 3rd person to help out.  It was nice for Mike to have a few breaks.

So what's the plan?  Well unfortunately I am still progressing.  I have trouble typing so Mike usually scribes for me however at the moment he is sound asleep.  My walking is worse, I got my first wheelchair last week, it's red my favorite color, we only use it for big outings.  I'm trying to walk for as long as possible.  My speech is becoming a little slurry mostly when I'm tired.  All in all my body is falling apart however I'm doing pretty good staying sane. 

The up side of MND is my mom is coming out in a couple weeks!  I can't wait.  At the moment Mike and I are looking for a new place to rent, the place we are in now has too many stairs.  We also have both decided  to no longer work.  We are not sure how much time we have left so we want to spend it together.

We have made the decision to stay in Australia indefinitely however, we will head back to Montana for a few months in May.  Not looking forward to the trip over but I reckon being with my family for awhile will be worth it.

Emotionally we are doing OK.  What Mike and I are going through is crazy something we never even thought to worry about, something most people don't have to deal with until they are old and gray.  I'd be lying if I said everyday isn't a constant struggle.  But what I've learned is we can withstand more then we ever thought possible.  I'm so blessed to have a husband that is my other half, who showers me with unconditional love in situations that would send others running.  I've come to the end of my rope countless times in the last few months but thank God I had Mike there to tie little knots and tell me to hang on.

Food for thought~

"I might have had a tough break, but I have an awful lot to live for."

Lou Gehrig

 

Part 2 - Vanuatu

Hi family and friends

This is some of what has been happening in Vanuatu so far.

 

Stand by for more action soon. 

Love Stay and Mike

The adventure begins - Part 1. Tasmania

Sorry its been a while since I've blogged. I've had a busy month turning 28 and planning our 6 week adventure. Yeah.

As lots of you may know our original plan was to travel around Australia in a caravan. As it came closer to our planned departure it became clear that this was most definitely not a good idea due to my increased movement challenges.

So plan B. Travel where we want, when we want. First stop Tasmania.

We headed off to Tasmania on February 13th with our good friends Jennine and Harry. Harry is an old frisbee friend of Mikes and as I told Harry when he said his girlfriend Jennine was coming over from Canada "we are going to be best friends", I was right.

Thankfully Harry organised the entire trip for us including car hire, excellent bed and breakfast style accommodation and the occasional tourist activity.

Highlights of the trip included: The delicious meal we had at the Grand Chancellor in Hobart. Sea food extravaganza including "monster crayfish". This was followed shortly after by a wharf side proposal by Harry to Jennine.

We had a nice drive up to Launceston, where we met Harrys uncle Jack, Aunt Becky and family. We had an excellent lunch with the Tasmanian branch of the Birrell family including our first bottle of French Champagne to celebrate Jennine joining the family.

The jewel in Launceston's crown is cataract gorge which sits right on the west side of town.

The next 3 days were spent in a sleepy little town in the middle of Tassie. We stayed at the charming Tin Dragon cottages which featured an outdoor spa bath to watch the milky way go by, a delicious organic BBQ basket and exceptional service. I did however get spit on by a disgruntled alpaca.

We also spent some time at Bicheno on the Bay. The highlight of my trip was the delicious fresh oysters for dinner and the penguin walk night tour which was full of penguin action.

Final stop on the trip was Port Arthur convict settlement. This was a nice look into Australia's brutal history and although we didn't go on the night ghost tour I was on the look out as we toured the grounds.

We spent our final night in a old restored convict era building called Convict Station. This building had an air of the spooky about it which was enhanced by my bed being positioned directly under the man hole to the attic. The convict attic.

All up our trip to Tasmania was an absolute pleasure. I stuffed myself with seafood, had fantastic company, beautiful scenery and a rockin' good time. Thanks to everyone who made this trip possible through their kind contributions.

Next stop Vanuatu, hoot. I'll leave you with a few pictures from the Tassie trip. Enjoy!