Big Freeze 5 Fight MND


#21

I was out walking on the Outer Circle Railway track in Kew/Balwyn/Canterbury on Saturday morning when a tall and very upright man in a black tracksuit passed me going the other was. I didn’t really notice him until we were almost level, but when I did I immediately thought I recognised Neale Daniher. I stopped when he had passed me and watched him: very upright as I said, but he was not walking very quickly and there was something slightly uncontrolled about his arms, which were hanging quite limp. On my way back I passed him again coming the other way and it was definitely Neale Daniher.

I have to say he didn’t look happy. That may be a result of the disease destroying control of the muscles of his face, but he looked sad.


#22

From my experience (3 people in my close world lost their battle with the beast), they are acutely aware of what is happening and the speed of the destruction. Generally they try and hide the reality from their loved ones but every so often when they think you aren’t watching, they seem to allow themselves to feel sad.

Neale may use his walk to process his thoughts and feelings, but he may also be using every bit of energy just to do his walk and his face is at its resting position.

The really ■■■■ thing about the beast is that the mind of the person is completely normal and working fine but the body just won’t do what it is meant to. They know they are being slowly trapped within themselves.

We just have to find a cure.


#23

Yep- a terribly cruel disease- lost my closest friend to it a few years back. The money Neale is raising is just wonderful along with increased knowledge and awareness. I really knew nothing prior to the 18 month downhill journey I witnessed and shared. I’d encourage everyone to dip into their pockets and donate to this if they can.


#24

Will be going to the ess v hawthorn game on Friday night and taking my 12 yr old grandson. He’d like to get a Big Freeze beanie, do you reckon they could still be selling them outside the ground, or is there anywhere else in Melb that would sell them?
I think we get into Melb about midday so have enough time to go and get one. Thanks for any help


#25

From MND website

We are selling beanies at the following AFL games over the next two weeks;

Friday, June 7 at MCG

(Richmond v Geelong)

Saturday, June 8 at Marvel Stadium

(Carlton v Brisbane Lions)

Sunday, June 9 at SCG

(Sydney Swans v West Coast)

Monday, June 10 at MCG

(Collingwood v Melbourne) – BIG FREEZE 5

Thursday, June 13 at Adelaide Oval

(Adelaide Crows v Richmond)

Friday, June 14 at Marvel Stadium

(Essendon v Hawthorn)

Thursday, June 20 at Optus Stadium

(West Coast v Essendon)


#26

On the Front Bar last Thursday his speech was noticeably slurred. There was a big difference from his speech at the same time last year, and the muscles in his face are not all working together.


#27

Oh wow, thank you, that’s just what I needed to know.

Now, can you guarantee a win?? :laughing:


#28

I believe Bunnings are selling them.
You’re in Tassie ?
Check with your local store.


#29

From what I read only Bunnnings in Vic were selling them in stores, but you could order them online, but I don’t think it would arrive in time, having to come ALL THAT WAY to Tassie.:rofl: Honestly I receive items quicker from overseas than I do from the mainland.

All good, we’ll get one from outside the ground on Friday night


#30

I believe there is a shipment making its way to the mainland as we speak…

IMG_3234


#31

Liam Picken as the joker. EPIC costume!


#32

Who else said “AND BROWNLOW MEDALLIST”?


#33

Because we’re not seeing him very often it’s quite easy to pick out his regression.
My grandpa’s cognitive function is on a similar downward trajectory to Neale’s physical. Not sure what would be worse; having a sound mind and no body to use it, or having a healthy body and no mind to control it.


#34

Over $1.5 m raised. Good job.


#35

#36

Hopefully hard enough that he misses the slide and falls over the edge.


#37

Kudos to Nick Reiwoldt for his effort as Freddie Mercury. He was the stand out slider.