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.