affected
Guru status reached
- Joined
- Apr 26, 2013
- Messages
- 16,096
- Reason
- Lost a loved one
- Diagnosis
- 05/2013
- Country
- OZ
- State
- AU
- City
- 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.
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.