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affected

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Lost a loved one
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OZ
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lala land
Yesterday I helped run a conference with MND NSW titled "Living well with MND".

I did the registration desk, so got to greet everyone which is a busy job.

It was a jam packed day with speakers in order:
Speech pathologist
Dietician
Stoma nurse
Pulmonologist
Palliative care director
Occupational therapist
Me

Yep I got the totally unenviable position of last speaker for the day.

We did my session as an interview basically covering:
things that worked well
what I would have done differently
supports that helped me
how my regional advisor helped
how I looked after myself (haha)
our relationship while caring
one last point of advice to end the day

questions from audience

The audience were PALS, CALS and family/friends. One thing that struck me was that many PALS had 2 or more support people with them. Several PALS had more than 4 support people with them - incredible! I just loved seeing whole groups rallying behind a PALS.

Basically I talked about using palliative care from early after diagnosis (it is a bit different here as pall care is a gov service rather than all your private hospices), accepting help in the home, accessing counselling, massage and online support.
I talked about the difficulty of losing the relationship and dealing with FTD.
I also said I would not do anything differently as I have total peace that I let Chris make decisions I did not agree with because it was his body and his disease and his right to choose.

I finished off with talking about acceptance. I talked about how much energy it takes to 'fight', compared to accepting and living each day as best you can. You've all heard me talk about that many times over here :)

When I finished, nearly every single person in the audience were lining up to talk with me. The first who got to me was a beautiful bulbar onset PALS, just diagnosed 2 months ago and she just hugged me and cried as she thanked me for what I said. Of course I cried with her, and then found many people having a little tear as they hugged me (most wanted to hug me rather than shake hands or whatever).

The feedback forms apparently showed that the majority of people reported my talk as the highlight of the day.

I know that some people have looked at me at times and kind of have this attitude of "isn't it time you moved on from all this MND stuff".

Today totally clarified for me that until there is a cure, I want to be a part of helping others, it is important for me as well.

Don't worry, I have a lot of other life happening, and so much of it is beautiful. But my legacy to Chris is to help others by sharing things that I learned.

I don't ever think all other past CALS must do anything like this, I just wanted to share with you all that 2 years and 2 months down the road on the other side, I'm still standing and I'm finding the new shape of my life, but am honoured to know that what I learned when I had my Chris can help others now.
 

Trixie80

Active member
Joined
Jun 21, 2014
Messages
95
Reason
PALS
Diagnosis
03/2014
Country
CA
State
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Abbotsford
I know i value your input and experience, and i imagine your audience did too.
 

Nuts

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Extremely helpful member
Joined
Feb 23, 2014
Messages
2,531
Reason
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NC
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Beautiful Tillie, we each have our own path in life, and sometimes it takes a tragedy to show us ours. I have worried about you "living", but I know now that you are not stuck in the past with your grief, you are moving on and helping others through this is obviously your calling. You are marvelous at it, and clearly it fulfills you. That and Koalas :). I am thankful that there are people like you who continue to lend their experience and compassion to this community.

I am not surprised that you were the highlight for many attendees. Not at all. Everyone else spoke about coping. You spoke about living (the good, the bad, and the ugly, as they say).

Here's to another printing of that book!!!

Becky
 

Staying strong

Active member
Joined
Nov 20, 2014
Messages
78
Reason
Lost a loved one
Diagnosis
5/2011
Country
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State
ct
City
danbury
well done!!! You set a great example for all of us out here.
 

poppies

Distinguished member
Joined
Apr 2, 2013
Messages
233
Reason
Lost a loved one
Diagnosis
02/2013
Country
SA
State
Kwazulu Natal
City
Durban
What a rewarding experience for you, thanks so much for sharing it with us! I remember feeling desperate for information throughout Iven's illness, from someone who I felt truly understood. I am sure that was part of what drew everyone to you that day. That and your shining personality! :)
 

starente15

Senior member
Joined
Oct 27, 2014
Messages
807
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10/2017
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NJ
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Northern
How wonderful!!
 

Atsugi

Moderator emeritus
Joined
Jan 11, 2011
Messages
5,187
Reason
Lost a loved one
Diagnosis
12/2010
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US
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FL
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Orlando
I am very impressed. And not a bit surprised. You're really a hero, Tillie. Thank you.

I'm glad, too, very glad, that life has handed you some smiles.
 

texastc

Distinguished member
Joined
Aug 30, 2015
Messages
273
Reason
Lost a loved one
Diagnosis
09/2013
Country
US
State
TX
City
Acuff
You are amazing. I'm also glad you've been dealt some warm fuzzies...and are seeing a new purpose. You are armed to help many...more. You will be blessed beyond all expectations I have no doubt. xx

tc
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
958
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
When we have difficulties in life, we often wonder "why me?" Well sometimes it is because we are the people who would best handle it, work through it, and then use that difficult time to help others. You are one of those people. I am so proud of you, and I bet you there is a soul up there watching you and feeling pride in you as well. Well done!
Paulette
 

scaredwifetx

Forum Supporter
Very helpful member
Joined
Jul 25, 2015
Messages
1,573
Reason
CALS
Diagnosis
07/2015
Country
US
State
tx
City
Dallas
Tillie, I cannot express in words how important you are to this fight and forum. You help so many and your advice is always so warm hearted. The ALS community is so very lucky to have you as one of it's voices. You are such a caring person and bring Joy to many of us when we need it the most. You deserve to shine!
 

Gorby

Distinguished member
Joined
Nov 5, 2015
Messages
103
Reason
DX UMND/PLS
Diagnosis
08/2015
Country
CA
State
BC
City
Vancouver
Now I have tears in my eyes. Thanks so much to the past CALS that are a part of this forum. Your knowledge and compassion are invaluable.
 

Gembead

Senior member
Joined
Oct 11, 2014
Messages
592
Reason
Loved one DX
Diagnosis
10/2014
Country
Aus
State
Western Australia
City
Bridgetown
Thanks once again Tillie, you are wonderful.
Luv n hugs Gem
 
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