[robynmc]

in reply to: Members forum suggestions- #9047

Totally agree Margot and totally understand how you feel about cutting back as we all feel that way sometimes Usually groups are only responsible for the Facebook group where this is different we are responsible for running DNA with many other outside obligations answering queries, paperwork,keeping the website updated, speaking with our Medical team, writing brochures and running a charity with its obligations to name just a few with only a few volunteers covering everything so there is no way we could cover a forum as the Facebook group can unless others volunteer to help

[robynmc]

in reply to: Members forum suggestions- #9037

It wasn’t just your lack of it knowledge I was including myself in that

[robynmc]

in reply to: Members forum suggestions- #9035

I think you are on to something sounds good

[robynmc]

in reply to: Members forum suggestions- #9033

Yes totally agree Wendy there has to be another way around this and unfortunately we aren’t as tech savvy as we would like to be
But we definitely aren’t in competition with adsg but we have to offer another alternative as you said maybe a list of members who would like to communicate with one another
Even if under headings like cervical Dystonia etc or dbs so people know the person they communicate with has the same problem
Just thoughts

[robynmc]

in reply to: Members forum suggestions- #9028

Totally agree with everyone with suggestions but I’m going to throw a spanner in the works and ask if the forum is needed or is there another suggestion to replace it. Its been hot and cold over the years it gets used for a while and then not for quite a while
is there another way of communicating or is everyone happy to just add questions and wait for a reply

[robynmc]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #8702

Well done Margot

[robynmc]

in reply to: Zoom chat 8th March 2023 #8693

I’ll have to talk to the gp next time I see her about this

[robynmc]

in reply to: Zoom chat 8th March 2023 #8690

I hadn’t heard you can have tests to see what medications have side effects does it look at all drugs or do you need to tell them the drugs to test

[robynmc]

in reply to: Zoom chat 8th March 2023 #8688

Great write up Wendy

[robynmc]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #5333

Anna
Dbs is not a cure if it all turned off now I would be back where I started so will be doing everything to make sure that doesn’t happen
Before dbs my head was leaning backwards and to the right with constant spasming I couldn’t look to the left it would just fly back since dbs my head is straight and not spasming but I recently sold my house and down sized and tried to do everything myself and just totally overdid it so I have a few problems but not like I was I’ve spoken to my neurologist and he is going to reprogram me so that will be good

[robynmc]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #5331

it has been well worth it in the end its given me my life back I definitely couldn’t go back to before DBS

[robynmc]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #5329

I didn’t have a choice drugs didn’t work and Botox wasn’t working but then after five years I’d started going backwards I wasn’t coping with symptoms trying to work and my neurologist suggested dbs it’s a massive step to take but I didn’t have a choice and yes I did have my head shaved but that was 11 years ago now some surgeons only cut a part of your hair
Dbs for me has been life changing it does take them a while to get your settings right as every person is different and needs different settings
Robyn

[robynmc]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #5327

I ended up going 5 years with no treatment as the Botox no longer worked and then finally had dbs surgery

[robynmc]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #5325

It’s important any neurologist you see is a movement disorder neurologist they specialise in Dystonia and would know doses and areas to inject it’s really important they use a emg machine as then there is no guess work the machine is telling them which areas are spasming
I only developed antibodies after having very large doses of Botox over 20 years they have developed new proteins to try to prevent this happening
Robyn

[robynmc]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #5320

Anna I’m not saying he is doing anything wrong I’m wondering if he was charging you privately as Medicare wouldn’t have paid for Botox each month
I had Botox for over 20 years till I got antibodies and it no longer worked I was on high doses and it was every 3 months
Robyn

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