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in reply to: Travel tips- what do you do? #9608
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in reply to: Travel tips- what do you do? #9599Hello Wendy, travel has generally always been a trial for me, and has waxed and waned as my condition has been better or worse.
I can really relate to the face holding and pushing against the chair as methods that help, although it can be very wearing.
Over the years I would say for me it has just been a case of doing what the dystonia needs at the time. For a period I found a v-shaped large pillow with the seat back lowered was more comfortable.
Taking travel breaks to stretch and move helps me to break up the pain that creeps up.
Going on the smoothest roads where possible helps, taking bends slowly, gentle braking and acceleration. Limousine driving style is particularly good! 😊
Sitting in the back seat can help me as it reduces the view so reduces my dystonia reacting to what I see. There’s a tendency for dystonia to react in advance of something you can see is about to happen, e.g. you can see you may be about to brake suddenly so the dystonia switches on in anticipation. In the back seat at least that anticipation is reduced.
I’ve found having my seat back lowered is more comfortable but that will be different for everyone I’m sure.
Having my head not touching anything at the back can be more comfortable for me as the touch sets off my dystonia.
Hope you find some methods that are as comfortable as possible. And thank you for participating in the trial that hopefully will lead to more treatment options in the future 😊in reply to: How long to get diagnosed? #9335Thank you for the lovely comment Wendy! I wrote a reply to your post back in April but somehow lost my reply, oops.
in reply to: How long to get diagnosed? #9106Mine was certainly a long period before I was diagnosed. I had symptoms for nine years before I finally saw a neurologist who immediately diagnosed me.
Before that I tried a lot of alternative treatments and was psychoanalysed by a GP who said it was anxiety.
Like Denise, finally I saw a physio who tried her treatments which didn’t work and made me worse, but she knew that meant I needed a neurologist. Finally someone who told me what I needed!
Wendy my guess is that my long story happened because it was so many years ago when much less was known about dystonia. It’s encouraging to hear that you and Denise had much shorter journeys in recent times.in reply to: Members forum suggestions- #9064😀
in reply to: Members forum suggestions- #9062Just to clarify my point that ‘forums don’t run themselves’. I was thinking more about what helps people continue to engage, such as someone always being available to respond to a post if there are no responses so people aren’t left feeling alone, and someone regularly doing posts of interest so people feel the value of checking the forum regularly, for example. Hope that’s a useful thought Wendy!
in reply to: Members forum suggestions- #9061Sounds good, thanks Denise!
in reply to: Members forum suggestions- #9058How about a flyer for 2023 for the Zoom chats? Include dates, times, contact, and a summary of their aim.
Parkinson’s SA created a flyer for our lunch group and it felt hard at first to be locked into dates I had to attend, but now it’s going well and I think it’s showing it’s an ongoing group and people can plan ahead.
It was these lunches where I’ve mentioned the Zoom chat group, Wendy 😀in reply to: Members forum suggestions- #9057I do random emojis too Wendy, particularly on Facebook messenger and they can’t be undone, I just have to laugh!
in reply to: Members forum suggestions- #9052Good idea, Lee. The Zoom chats are a point of difference that are worth promoting.
in reply to: Members forum suggestions- #9048I guess it could be worth asking members if someone is interested to volunteer to moderate the group, just an idea.
in reply to: Members forum suggestions- #9045Lots of good thoughts.
I’ve observed that active Facebook groups are run by super active admin teams who constantly respond to posts and moderate potential conflicts, and make people feel welcome multiple times. DNA would need to commit a team to be active in order to avoid people posting without receiving a response or other issues arising. Unfortunately forums don’t run themselves from my observation.
Another issue for me is that I’m constantly trying to cut back on online use as I do it too much, so I try to only pop in to forums every now and then. All my interactions on the topic of dystonia I find really valuable and add to my life, so I just need to work to keep things in balance!in reply to: Members forum suggestions- #8949A few ideas I had:
– I realised I needed to click ‘subscribe’ to get notifications of new posts. This should help me use it more. If my inbox gets too full with notifications, I’ll unsubscribe and instead check the forum every now and then.
– Members may need to be informed about the ‘subscribe’ function. Perhaps you could include brief instructions at the top of the forum, and who to contact if you get stuck.
– There are a few steps to get from the front page of the site to the forum. Perhaps try a button on the front page to go straight to the forum, if it’s something we’re using often.
– It does get awkward to use when replies go over more than one page because the latest reply appears on another page. Perhaps the interface settings allow this to be reversed, where the newest reply appears at the top? Or do the settings allow you to limit replies to one page, so we need to start a new post if the thread gets too long?
– It would be good to have a statement about how the forum is moderated, rules and privacy.
Hope that helps!Thanks Robyn and Wendy!
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