Aussie Aussie Aussie...any oi's in the audience?

[Green Queen]

Hello all.

I have been told I'm quite a rare breed...but if there's a PLS support group, maybe not...I'm glad to not be going through this alone.

I welcome everyone as a friend, but quite curious to know how many Aussies are out there like me?

It's no fun being 'unique' and 'rare' on my own...

God bless,

Janelle x

 

[Tractor Boy]

Janelle, considering you are an Aussie, we will not hold that against you. Welcome to "the club." I'm not from "down under," but you have reached a great resource here in the US. At least we now know they have internet service down there! Lol... TB

 

[affected]

Janelle I'm on the Far North Coast of NSW.

We have 2 with PLS that I know of in my area here. Read that as radius from Tweed to Grafton, coast to Tenterfield.

One is well over 10 years in, he is the father of someone I know.
The other is a couple of years diagnosed.

So yes it's rare, but we do get em.

PS I've been known to say oi oi oi here just now and then

 

[MaxEidswick]

>It's no fun being 'unique' and 'rare' on my own...

ah but you are unique -- and, I am sure, a very rare person!

 

[avnl]

Greetings, having just returned from Western Australia, I salute you! My husband has had PLS going on 11 years. We met our W. Australian friends in New Zealand and have visited them twice since then. My husband is walker dependent and should be considering a wheelchair but is resisting, he has bulbar symptoms and though progression is slow is progressing. We are trying to travel as much as possible while we can.
We love Australia. This trip, we went as far north as Dandaragan and as far south as Albany. For the most part we stayed in the Swan Valley sampling many wines and enjoying the sights of Perth. For outings he is using a folding electric wheelchair which has improved the quality of enjoyment by a lot. We hope to miss Winter again in Australia next year.

 

[Gembead]

Hi Janelle,
Not Pls but Als, but still from West OZ, please let me know if you would like to chat overthephone or via email and I can PM you my details.
Love Gem

 

[Green Queen]

Hello! I am glad you enjoyed your trip here! We are only half a day from Perth, closer to Dandaragan, would love to show you around next time you are here! We are travelling a little as well, for the same reason. We are cruising to New Zealand at the end of the year. Happy memories for our kids. Hoping to do Singapore next year. I have a scooter I have named Henry. I think I spend more time with him than my husband!

 

[Green Queen]

If by Internet you mean that mystical yellow cord that's attached to the wall, yes we have that. Getting running water next week! Gotta love ya, tractor boy! Your comment made me laugh! Thank you for letting me know you are here, the more the merrier!

 

[Green Queen]

Max thank you so much for the gorgeous pic! Judging your pic you have an interest in photography. My kids and I have ant to take a photo a day. Mmmm....we'll see! They are entering a Young Carers photo competition this month and the photos have to Illustrate how being a Young Carer makes them feel. Looking forward to their entries! God Bless
J x

 

[MaxEidswick]

>Judging your pic you have an interest in photography.

more a disease -- before my arms went anyway ...


.

 

[davbo49]

the pic's say it all. those was some good ones nice work max

 

[Green Queen]

Hey Max. The kids and I loved the pics, thanks for sharing. Our dog Lucy is our angel. She's become quite round since this all started. I used to walk her every day...mind you she loves it when I take her to the beach on Henry, my scooter. Yet another silver lining.
God Bless, J x

 

[affected]

Janelle Max has video of him walking the setters in his PWC. You should try getting a daily walking regime going again with Lucy as it would be good for both of you?

He could be persuaded to post some of the best video again I'm sure ...

 

[Green Queen]

Hi Tillie, yes good idea. Routine is the key. The 2nd April was 12 months since my episode that sped up my condition. no routine at all...that naughty Easter Bunny didn't even visit my youngest last night! We will remedy that shortly! Because of the kids, routine is paramount. Good idea for Lucy, didn't think to add that back in to my day. Thank you. It does take someone looking in to make sense of it all at times.

Yes...a video would be lovely...

God Bless, J x

 

[MaxEidswick]

>He could be persuaded to post some of the best video again I'm sure ...



https://youtu.be/ouh8q7BqAFc