Hello from Aussiegirl

[aussiegirl]

Hi there, I am new so thought to introduce myself even if this is mainly a UK group.
I was diagnosed 6 years ago and had symptoms for about a year before that. A shock, yes, but I had already guessed correctly thanks to Dr. Google. I thought to myself, either spend the rest of your time miserable and unhappy,......or make the most of it. In no way did I want to be on my deathbed, and think, hell, I'm sorry now I wasted time feeling sorry for myself.
So hubby and I have traveled widely and thoroughly enjoyed ourselves. Then came Covid, which put a stop to that One thing we can't afford is time!
I was on a 12 month trial for Squalene which apparently crosses the BB barrier, but I never heard the results.
I'm getting unsteady on my legs, even with the walker now, but I have my electric wheelchair for long distances. Have decided not to have much interference (pegs and such) I will manage on my own. My hubby is happy with our arrangement, he is a godsend.
Not sure what else to say, so will leave it there, cheers.......................

[denise]

Hi aussiegirl

really nice to meet you. I gather you are in Australia rather than here. I've been out to visit my friend in Tasmania.

there's some really lovely people on here and as you can see we talk about everything so feel free to ask questions, start new topics or just join in.

lots of love and hugs Denise xxx

[Lynne K]

Hi there, I am new so thought to introduce myself even if this is mainly a UK group.
I was diagnosed 6 years ago and had symptoms for about a year before that. A shock, yes, but I had already guessed correctly thanks to Dr. Google. I thought to myself, either spend the rest of your time miserable and unhappy,......or make the most of it. In no way did I want to be on my deathbed, and think, hell, I'm sorry now I wasted time feeling sorry for myself.
So hubby and I have traveled widely and thoroughly enjoyed ourselves. Then came Covid, which put a stop to that One thing we can't afford is time!
I was on a 12 month trial for Squalene which apparently crosses the BB barrier, but I never heard the results.
I'm getting unsteady on my legs, even with the walker now, but I have my electric wheelchair for long distances. Have decided not to have much interference (pegs and such) I will manage on my own. My hubby is happy with our arrangement, he is a godsend.
Not sure what else to say, so will leave it there, cheers.......................

Welcome aboard Ausiegirl. 6 years and a positive attitude is fantastic. I too am getting around still at home with a walker three and a half years since diagnosis but it won’t be long until I have to use my powered wheelchair all of the time.

Its great that you have an understanding hubby. Shame that Covid put a stop to your travels but hopefully you can start again soon, Lynne

[LindaB]

aussiegirl great to meet you virtually....what a great & positive attitude....I hope to get there 😘

[Ellie]

aussiegirl A warm welcome to the forum.

Do you know which form of MND you have? It's obviously a slowly progressing form, although it may not feel so to you (who'd obvs not have any form of MND whatsoever!!), so I hope your progression remains as slow over the coming years.

Take care,
Love Ellie.

[Suefromwakey]

Hello Aussiegirl, It would be interesting to know what the MND perspective is from Australia, what kind of help you get and what you can expect from local authorities etc, if you feel able I would like to compare!

Sue

[Mary C]

Hi Aussiegirl,
glad you are doing well and still getting about.I love your positive attitude.At first like you I decided I was t going to have any “ interference” like “ pegs and such” but as my appetite dwindled and weight loss became an issue I changed my mind.You must do whats you think best and we all have the choice to accept or not accept feeding tubes, non invasive ventilators etc.
The pattern of symptoms and deterioration is different for us all but glad you have had opportunities for travel with your husband and had a great time doing so.
Glad you have a supportive husband .
Look forward to hearing how you are getting on Hope as Ellie says that progression remains slow,
Best wishes
Mary

[matthew55]

Welcome aussiegirl to your one stop help and advice space. No one wants to be here but no one regrets finding us. Got to say I love your spirit. I really hope you have six or more years to go. 🤗😘😍😁xx

[Barry52]

Welcome Aussiegirl.

I have a few friends in Australia who are members of a group with slow progression MND. I follow their research program which mirrors that of the UK. My niece lives in Queensland and I visited 6 years ago.

[aussiegirl]

Thank you all for the welcome and kind words.
denise yes in Australia, Tassie is a beautiful place, I lived in Hobart for 3 years
Lynne K Overseas travel is pretty much over for me now, we can't get out of the country for at least the next 12 months. Can still travel here of course, but that is becoming harder as I'm not moving as well.
LindaB If you can't get there, just pretend. I did a lot of that in the beginning.
Ellie I was told ALS. One thing I did hear when I had my EMG, is one Dr. saying to the other " it sounds like a cross between ALS and PLS" Seems the sounds are different. Of course, I immediately googled PLS.
Suefromwakey I was able to join the National Disability Insurance Scheme as I was under 65, which is the cut off point. Older people have to go on an Aged Care program. I received a generous package, which I self manage. That means I can buy what I like, as long as it is associated with my illness. Bigger items such as wheelchairs and hoists, have to be prescribed by an OT, along with expensive tech.
Mary C Yes, I treasure my hubby, he is the world to me. Travel has been wonderful, I finally got to see the pyramids. I often wonder if this disease pushed me, whereas if I didn't have it, I could always think "next year!"
matthew55 Not sure about another 6 years, but I'll take what I get. Not as if you can bargain your way out of this, is it?
Barry52 I'd be interested to read about that research program. Qld. is my home state, 'beautiful one day, perfect the next'.

[matthew55]

aussiegirl you are fitting in nicely. We sure are lucky to have you. 🤗😘😍😁

[Deb]

Hi Aussiegirl and a warm welcome to the forum from me.

It's great you continue to travel and make the most of everyday. So pleased your husband is a treasure...mine is too and I think it makes such a difference to our outlook on life.

Hopefully travel will be possible again soon and your progession will continue to be slow,🤞
Love Debbie x

[aussiegirl]

Hi Deb, nice to meet you too Glad you have a supportive hubby too!

[Gordan1111]

Hello Aussiegirl. I visited brother in Jevis Bay. Warned about red-back spiders crawling out of dunny

[aussiegirl]

Hello Gordan, yes many jokes about that.....