Australian Walk to D'feet MND

[affected]

OK many months of work, I wouldn't even want to imagine how many hours, and we are getting hunkered down for a flood. So today we had to cancel the walk.

Yeah, Australia the land of drought and flood ...

I'm attaching the radar image of a 256 km radius and yep I'm about in the middle of this. It's only showing up to moderate rain at the moment but since yesterday morning we have had about 10 inches now and it's going to keep building and raining all night. All emergency services on alert and small roads were already starting to get cut off this morning. The rain actually started further north than where I am which means the catchment areas have been getting far more than me.

OK for a little country town however we have already raised over $10,000 and people are still donating regardless of the walk being unable to proceed. So it's a success, it's just kind of weird that we won't be out there walking!

Don't worry I bought extra milk and red wine, so I'm staying put in my little house on the hill and have all I need for days.

Gem, how is it over there, when I was on bom just before to get this screen shot it looked like your weather is backing off?

 

[Nikki J]

Hope you are safe. So sorry about the walk. Hopkins had to cancel their event too because of the violence in Baltimore they were worried about participants' safety

 

[gooseberry]

Stay safe and dry Tillie. Have a glass or two of wine.

 

[Gembead]

Sorry that your walk has been cancelled, not sure of the weather situation up in Perth yet as we are a3 hour drive from there, it's 5 am just now and I havnt looked at the weather site yet, cyclones don't always do what our experts say they will do, we will go prepared with wet weather protection .
I hope it goes ahead as BJ has been well supported by family and friends and friends of friends who we don't know.
We will take pics so we can share with you all.
Love Gem

 

[affected]

Ha, one of the local daughters of a PALS has decided she and her team are walking anyway!

So hopefully I can get into town tomorrow and will walk with them, and now trying madly to round up the locals that did register to let them know.

It's never over til the fat lady sings as they say!

Pretty wet underfoot here tho ...

 

[Green Queen]

Hello ladies.
May the sun shine on the MND walks...or at least be glimpsed through the rain Tillie.
Stay safe
God bless, Janelle x

 

[gooseberry]

Maybe after you all walk Tillie, a good cup of tea or bowl of soup somewhere together would be nice.

 

[affected]

Thanks all, not sure but probably about 20 or so will meet up at the Fire Station to start our own unofficial walk (the firies made big donations and had planned to bring the fire truck on the day).

I'm thinking a coffee shop afterwards will be a nice thing to do.

Not much cloud out there now the sun has risen, but I have to drive a long way around to get in to town as the roads are still cut off in places.

 

[Nikki J]

Thank you for doing this in spite of everything. Hope it is a great day

 

[affected]

21 people came and we walked and the atmosphere and feeling for us was as great as if it had been the real official walk.

I was so pleased to meet a couple of family members with PALS and really make connection with them.

You will notice we had a teddy bear on the walk.
This had been Chris's teddy.

This was written by our bestest home care worker after Chris passed. Amazingly they were born the same year and had grown up just one suburb apart in Melbourne. He always said that he had willed her into his life (though with FTD he always complained bitterly about her to me too). She nows fosters the care of Teddy Jeffery, and so of course she registered him in the walk and he was proudly brought along in his own T Shirt. In the group photo you can see him in her arms.

- - - - - -
Chris and I often talked about having lived 10 minutes apart as kids, then living 10 minutes apart when we met as adults 50 years later – only a few kilometres. One day Chris started wondering how much distance there could be to still only be 10 minutes away. With some googling on my phone we found that with a spare 10 minutes (and a space shuttle) it’d be possible to burst through the stratosphere and be out amongst the stars – and that was even allowing for time to buckle up and count back from 10!
Chris and I often talked about growing up in Frankston/Seaford and we’d laugh about how rough it was. We’d remember things like when a Pancake Parlour opened in Frankston and the big artificial log fire was the flashest thing any of us had ever seen. We’d remember the local thugs called ‘Sharpies’ (imagine a skinhead with a mullet.) We’d remember being completely unreined as kids and running wild in the sand dunes behind the Pines estate, and we’d share stories of how rough our schools were. Chris once asked what my brothers were like and I told him “horrible.” Even as little kids they were shockers – their idea of family entertainment was to get me fired up by way of pinning my teddy bear down and punching him in the face. The look of horror on Chris’s face when I said that was priceless. He sat there stunned then said “Bastards.” I suggested that maybe I used to overreact a bit too but Chris said “It’s the principle of it.” My thoughts at the time exactly, being echoed back to me 50 years later.
MND made it so difficult for Chris to say any words, let alone words like “Bastards” and “Principle.”
Back as a kid I used to daydream (a lot) and imagine a person who would understand that you just shouldn’t punch teddy bears. Even in my wildest daydreams though I didn’t imagine that I would meet just such a person 50 years on. If I could go back and speak to my 5 year old self I would tell her about meeting Chris, and my imaginary ally in the prevention of cruelty to teddies would have a name!
When I told Katrina about Chris’s reaction to my teddy story, she told me that Chris still had his own childhood teddy bear, sitting just inside the house.

- - - - - -

In the last photo is the lady whose father has ALS, who was the one who stood up and said, well we are still walking! And so those very local few converged and we did. The lady on my other side is her MIL who now wants to become a volunteer for MND NSW. Successful day, even with the flooding and the official event being called off.

I know that for me it was great to be out there today, remembering that one year ago today I was holding Chris's memorial service.

 

[gooseberry]

Great pictures Tillie. I am so glad after all your hard work you were able to meet some of the pals and cals locally... maybe this disease has given you a loving supportive family of a different type.

 

[Green Queen]

Tillie that's fantastic! What beautiful timing for the walk. I'm not 'into' numbers etc, but I really love when important events coincide like it has for you. Perfect way to remember Chris today.
The teddy story is amazing. People definitely definitely come into our lives for a reason. What better demonstration could there be, than two people's love for teddies?
God bless, Janelle x

 

[MaxEidswick]

>Successful day, even with the flooding and the official event being called off.



>Perfect way to remember Chris today.

Ditto that!

 

[azgirl]

Way to go Tillie! No flooding going to hold you back tough girl!

 

[affected]

Gem how did your walk go?

Thanks Kay, you are right it takes more than a mere flood to hold this gal down!

Ditto Max

GQ and gooseberry, it's a special comfort when good comes out of bad and family are definitely good!