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Viewing 15 posts - 1 through 15 (of 30 total)
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  • wpowell21869@hotmail.com
    Participant
    Post count: 36

    ps forgive me @lillikad.com.
    I would love to talk with you by name but in my techno ignorance couldn’t decifer that from your email address 🙃

    wpowell21869@hotmail.com
    Participant
    Post count: 36
    in reply to: TMS #9476

    Hi !🙂
    Thanks for asking.
    The trial is being run through Deakin University in Melbourne.
    On the DNA website you will find information about it ( and others happening) under the research section, Australian…
    Absolutely I can help you find this info and provide direct phone contacts/ emails if needed.
    SO EXCITING to see the steps forward happening 😁
    I am a Victorian country girl so always a little tricky to access these opportunities but still wonderfully possible!!!

    wpowell21869@hotmail.com
    Participant
    Post count: 36

    Hi !! SO GLAD, that you have made enquiry 🙂
    So very sorry for my late reply.
    An email Zoom link is sent out the week of the chat which will take you directly there.
    If you don’t receive it I am absolutely happy to pass on to you
    Would love to chat 😃

    wpowell21869@hotmail.com
    Participant
    Post count: 36

    I enjoy the comfort of Zoom time Denise!!, can have a warm cuppa beside the computer and don’t need to leave the heater at all to get to the conversations 🤣😅😂

    wpowell21869@hotmail.com
    Participant
    Post count: 36
    in reply to: TMS #9349

    Thankyou Denise😄
    Yes, will be so interesting to see what may come.

    wpowell21869@hotmail.com
    Participant
    Post count: 36
    in reply to: TMS #9338

    Being a non invasive management idea certainly excites me.😀😀
    Wouldn’t it be wonderful if such treatment was proved to be successful and then an option for anyone of any age!!
    Thankyou Margot for your kind thoughts…. 🤩

    wpowell21869@hotmail.com
    Participant
    Post count: 36

    Thankyou again Margot for being so willing to share your journey with Dystonia challenges… alongside doing life. It is so encouraging to be supported this way.. 🙂

    wpowell21869@hotmail.com
    Participant
    Post count: 36
    in reply to: Forum Guidelines #9245

    Thank you Denise, 🙂
    Absolutely this is a space to share our thoughts and querys of our Dystonia journey.
    Knowing it to be safe is so reassuring!!

    wpowell21869@hotmail.com
    Participant
    Post count: 36

    It seems to have been that way for so many people Margot and I am so very sorry your journey was such…. and there was much insensitivity along the way. We are very grateful you have so transparently shared some of that with us in ‘Life & Music’. SO very encouraging to read of your resilience through the transitional stages of your diagnosis and finding the moving forward through life management options- you are an inspiration 🙂

    wpowell21869@hotmail.com
    Participant
    Post count: 36

    Oh Denise, I absolutely agree!!
    From what I read I see that the journey to diagnosis for some is years!!!
    I am so thankful that really a month after my symptoms became troublesome that I was referred and spoke with a neurologist who diagnosed me on my first appointment.
    Thinking about my transition from employed teaching responsibilities I would have truly struggled not knowing the why behind everything that was happening within my body.
    Having the diagnosis really helped in my decision making.
    Is it a matter of the symptom presentation or specialist knowledge…. there has to be a reason for the difference in time frame🤔🤔

    wpowell21869@hotmail.com
    Participant
    Post count: 36

    Couldn’t agree with you more Margot! There has to be participation in order to have an active relevant forum, that is available to support its members if/ when they reach out😀
    Like you said, the thought of someone wanting to engage and feeling alone is awful….
    Yes just knowing there is at least someone watching out and encouraging this process is a great idea. 👍
    I guess this could be something to suggest with the committee to see what the process from here should be 😁😁

    wpowell21869@hotmail.com
    Participant
    Post count: 36

    Thank you for understanding Margot!! Technology and I are continually getting acquainted 🙃
    Yes making connections through other opportunities, as you say with the Parkinsons group is such a good space to build relationships that may spill into the DNA space. Your comment about commitment to dates makes sense. It can be scary to lock in but is a good reality. I know with family/ friends working around a given time/ date to catch up is helpful ( and almost liberating) as everyone knows where they are at. I know the committee do a great job with emails so maybe making additions as you suggested is a great idea. I guess it is a balance of not wanting to overwhelm the email space with too much info…. again I do not understand technology but I wonder if such ‘Zoom chat publicity ‘ could be put on the cover page of the DNA site also🤔🤔
    Lots to contemplate, but it is exciting 😀 😄
    REALLY appreciate that we are having these conversations together everyone- Thank you!

    wpowell21869@hotmail.com
    Participant
    Post count: 36

    Please forgive my random thumbs up emoji. I tried to add it under a particular comment in this chat but it ended up at the end anyways…. 🙃🙃🙃

    wpowell21869@hotmail.com
    Participant
    Post count: 36

    👍

    wpowell21869@hotmail.com
    Participant
    Post count: 36

    The Zoom chats are a wonderful part of DNA, how can we promote more?? I know you are actively encouraging, Margot and Lee, in making personal contact with other members to invite to this space or to get togethers. How has this opportunity to make contact emerged? 🤔 I would definitely love to be a contributor in this process, I know how beneficial they and the community of DNA have been for me😀

Viewing 15 posts - 1 through 15 (of 30 total)