Nicola Jones (founder of the Facebook Primary Orthostatic Tremor Group) was unable to attend the meeting, but she sent this message.

Hello old friends and new,

I am sending a letter to be read out for me since I cannot attend the meeting.

Firstly, I would like to begin by acknowledging the traditional owners of the land in which this meeting is taking place today, the Wurundjeri people, and pay my respects to their Elders, past, present and emerging.

As you are aware I created the OT Facebook page as a little journal, so to speak, to record my feelings, frustrations and findings about OT. I was alone in this at first. It didn’t take long for me to connect with people who had the same rare neurological mystery ailment. 

We made fast friends and as we grew bigger we found support like no other. Our lives were not so lonely because we understood each other and the difficulties we faced daily. Sometimes our families didn’t understand so we turned to one another.

To me, this was a deep and meaningful platform which had saved my life quite literally. The people I hold most dear I have never met in person. This is the best part of humanity that gives us hope. 

We may never find a cure but we sure are a family who lift each other up when we are down, celebrate little (or large to us) wins.

We make each other laugh and smile and even nod at the screen when we read something only we can know.

It is sad that OT is the catalyst that brought us together, but a gift to cherish.

Now we have two new administrators who kindly took over for me as I was wanting to go AWOL and incognito for a bit. My mental health was suffering, and I was in denial even after having OT for 10 plus years. Susie and Joy were the perfect selection, their combined knowledge and experience with OT, medications, surgery and our holistic problems, were what made me sure they would handle my baby with care and attention. I would like to take this opportunity to thank them from the bottom of my heart for continuing the group on and continuing the amazing support.

I would also like to thank each and every member for supporting others when you are suffering too, sharing your findings on things that will help us and ranting when you need and likewise allowing others to rant. Kindness is most important to me, and our group is full of it. Thank you and well done.

Thank you for greeting me back to the group and I look forward to many more years of this wonderful family.

Blessings Nicola x