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Gembead

Senior member
Joined
Oct 11, 2014
Messages
592
Reason
Loved one DX
Diagnosis
10/2014
Country
Aus
State
Western Australia
City
Bridgetown
Hi, my name is Gemma and my wonderful Hubby was diagnosed two weeks ago with MND as we call it here in Oz, BJ is 56 years old, his symptoms started in January this year with loss of b alance and walking into door frames, and being clumsy with his hands, after a series of blood tests, MIR and brain scans a EMG confirmed MND, so now our journey begins.
I am glad to have found this forum and know that there are many others who are experiencing the same things and we can support one another thru this terrible time, so a big thank you in advance.
Love Gem
 
Hi Gem, so sorry that you are joining us but you are amongst friends here.

hugs to you

Barbie
 
Gemma - so sorry you've joined our ranks! A big welcome to you from me, I'm in NSW, so a long way away, but there aren't really any other active aussies here, but there are a few that drop in now and then.

I don't know how I would have looked after my Chris without this place, it's the place we never wanted to end at, but the best place to be nonetheless!

Ask questions, participate and you will get private messaging permissions after you have been a little active, and that can be really helpful as well as talking on the threads. Something like after 25 posts but it's not that simple so don't count them. Just read around through the threads that are not too scary. By that I mean, you are at the beginning, still getting over the shock of the reality of the diagnosis and you don't need to read about too much of what may be down the track just yet.

The newly diagnosed section and some of the CALS threads are a great place to start and join in the conversations there.

People here are great, they are like my family!

Tillie (yup I got a grand nickname eh)
 
Welcome Gemma! You will definitely get understanding and support here. It isn't easy being being a CAL ( but obviously harder being a PAL!). After you've recovered from the brain numbing reality, check out the stickie on "anticipatory planning". It is a great guide of where to go next in this journey! Glad to have another lady with a cute accent!
 
Thanks for the warm welcome, Barbie , Affected and Cheerleader, I look forward to getting to know you all and it's wonderful to have this great support system in place.
Monday we have our first appointment with our MND Doctor and hope to get a few questions answered.
Tillie it's good to know there is another Aussie on this site .
Love Gem
 
Welcome Gemma,

I'm a fellow Aussie, though not as active here as Tillie! Sorry you had to join us, I found this group a little late in our journey but it's full of great support and advice,

Deb
 
Gems welcome! Sorry for the reason you're here but you are in the right place. The warm welcome I received was so heartwarming. Know you and your PALS (people/person with ALS) may go through some different stages emotionally and that's normal.
Use this forum and read and search as far as you are comfortable. I avoided some topics as scary until I adjusted. Find your own pace and ask away, you'll be thoughtfully answered.

Sherry
 
Gem write a list of questions you want to ask.

When we went to our first MND Clinic appt in Brisbane (I'm on the Far North Coast of NSW), we took a printed list of questions and handed it to the neuro. He did what he wanted to do, then at the end he sat down and went through and answered every single question.

He also knew how to fill out the centrelink forms by stating the worst scenario and it made for very little paperwork and easy passing through the system. Chris did still have to attend a 'job ready' interview - I know right? Took about 3 minutes for the person to thank him for coming and sign everything off lol

Yay Deb, nice to see you here!
 
Welcome, Gemma!


-----
Max - Saturday, October 18, 2014 5:00:43 AM
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.
 
Welcome, Gemma, you are among friends here, I have learned a lot and stopped some unnecessary worrying.

Janie
 
We have our appointment tomorrow which is a 3 hour drive from home . We look forward to meeting our new neurologist and our MND support person.
Thankyou everyone for your welcome.
Today we have meet with friends and family and shared our news and received great support hugs and tears of love.
 
All the best with the appointment!

We had to travel 3 hours to our clinic too.
 
>We have our appointment tomorrow which is a 3 hour drive from home

best of luck!
 
Just back from our trip to Perth, our new neurologist has confirmed the first diagnosis of MND, we also meet our regional care giver for MND group who is a very special Lady.
BJ my hubby is handling the whole situation ver well, so proud of him.
Our next appointment is in two weeks for a breath function test ,
For now we start our plans to build a wheel chair friendly house.
Wishing you all a wonderful day.
LovevGem
 
So glad your doctor visit went well! I am proud of BJ and you for being strong. Hope the plans for the house go well.
 
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