Forum Replies Created
DeniseKeymasterJuly 24, 2023 at 2:17 pmPost count: 16
Hi Wendy and Margot. I do similar things to both of you like holding my face and putting my seat back. I also try to pace myself and if I have a day with lots of activity and travel, then the next day I try to schedule gentle activities and rest periods. Often doing too much provokes not only neck pain but also headaches so I always pack Nurofen and Panadol.DeniseKeymasterJuly 24, 2023 at 2:16 pmPost count: 16
Hi Wendy and Margot. I do similar things to both of you like holding my face and putting my seat back. I also try to pace myself and if I have a day with lots of activity and travel, then the next day I try to schedule gentle activities and rest periods. Often doing too much provokes not only neck pain but also headaches so I always pack Nurofen and Panadol.DeniseKeymasterJuly 3, 2023 at 12:06 pmPost count: 16
Welcome to DNA! I’m sorry you just missed out on the last zoom chat – Your membership notification came through on Saturday and the chat was Friday. It would be lovely to meet you at the next one on the 26th July. An email will be sent out to members beforehand with the link to join it. They’re very informal chats with about a dozen or so members and we talk about anything and everything. Looking forward to meeting you. Denise
DeniseKeymasterJune 28, 2023 at 7:03 amPost count: 16DeniseKeymasterMay 28, 2023 at 12:25 pmPost count: 16DeniseKeymasterApril 13, 2023 at 1:34 pmPost count: 16
- This reply was modified 2 months, 2 weeks ago by Denise.
Thanks for all your input. Certainly food for thought. With regard to two of your queries Margot, Laraine is the forum moderator as she has access to edit and remove posts. I agree that it may be preferable to have the most recent comment appear first. We may be able to make some small changes to the forum such as this, but large scale change is not possible without us going to totally different software.DeniseKeymasterMarch 28, 2023 at 3:53 pmPost count: 16
That’s a great idea Wendy. I think it’s important to try to do some exercise, as little or as much as you can, with dystonia. I do very low impact exercises at my gym and luckily they have one stationary bike where you can recline and cycle. Unfortunately with all the others you have to lean forward which doesn’t suit me.DeniseKeymasterDecember 23, 2020 at 7:25 amPost count: 16
What an incredibly frustrating journey you’ve had. But like Wayne said, it’s great they identified and fixed the heart issue.
I have cervical dystonia with the main symptom being tremor. I have Botox which has a reasonably good effect on it. I was also active beforehand. One of the best things I did was have my neurologist refer me to a physiotherapist who specialised in neurological conditions. She helped me develop a series of exercises and stretches that help with pain and range of movement. As a result I’m able to go to the gym regularly.
I also have dry eyes, twitches and little spasms in other parts of my body so dystonia isn’t just affecting my neck.
Before you go to see the neurologist type up a list of all your symptoms, even the weird ones! Try to video any body parts that move or spasm. And also do up a list of medication you’ve been on and how you think it’s affected you. My dystonia is aggravated by some meds.
Good luck with your neurologist appointment and please let us know how you go.
DeniseDeniseKeymasterMay 8, 2020 at 8:32 amPost count: 16
It sounds like you’ve had a tough time. I also have Cervical dystonia but was lucky to be diagnosed relatively quickly. I hope your appointment with your neurologist goes well. Mine referred me to a physiotherapist who is familiar with dystonia. Together we developed some exercises and stretches which have been really helpful in reducing pain and giving me a greater range of movement. But I’ve also developed jaw issues and am awaiting a splint which I hope will improve things a bit.
I hope you manage to find a treatment regime that works well for you.
DeniseDeniseKeymasterAugust 19, 2019 at 1:11 pmPost count: 16
A lot of people say it takes a few rounds to get Botox right. I’ve had four and we’re still adjusting the dose and locations.
There are a couple of Facebook groups I’m a member of and they’re sometimes quite helpful. There’s the Australian Dystonia Support Group and also the Cervical Dystonia Support Forum. It helps to know you’re not alone in this.
DeniseDeniseKeymasterAugust 16, 2019 at 4:29 pmPost count: 16
What type of dystonia do you have? I have cervical dystonia and have found Botox and gentle exercise and stretching to be beneficial. My neurologist referred me to a neuro physiotherapist last year and she developed a series of exercises and stretches I can do at home. It definitely helps with pain. Did Botox help you at all?
DeniseDeniseKeymasterJune 19, 2019 at 5:28 pmPost count: 16
I’m Denise and I also have cervical dystonia. I joined the DNA committee last year. Meeting people with dystonia has helped me because although I have supportive family and friends, they don’t really understand.
I’ve only had 3 rounds of Botox and have had mixed results. I don’t go well on many meds so I asked my neuro at my last appointment if he was an authorised prescriber of medicinal cannabis and unfortunately he’s not. I don’t know whether many neuros are. I don’t know that I would consider it yet but I just wanted to know if it’s an option down the track. I do lots of exercises and stretches which seem to help with my pain and range of movement.
I hope we can meet up at one of our meetings. I like hearing what other people are doing for their dystonia and looking for tips!
DeniseDeniseKeymasterMarch 9, 2019 at 5:01 pmPost count: 16
Welcome to DNA. I’ve have CD for about 18 months. I’ve found it really helps to be able to connect with other people who have dystonia. You’re right that it’s a bit scary not knowing how or if it’s going to progress. I don’t think mine has spread but I get the awful fatigue that you speak of. I’ve had Botox twice and will have more soon. I’m trying to manage mine with exercise and stretches given to me by a physio who specialises in neuro conditions. It seems to be helping with pain. I just take each day as it comes.
Denise 🙂DeniseKeymasterJune 23, 2018 at 11:02 amPost count: 16
Hi. I’m Denise and I was diagnosed with cervical dystonia in December 2017. It seems my dystonia is caused by medication I was prescribed during my treatment for PTSD and I now also have tardive dyskinesia as a result. I had successful Botox treatment last December and the effects lasted over four months. I’ve just had my second round this week. I’ve not taken much medication recently but I’m starting Epilem next week for the tardive dyskinesia which I’m a bit nervous about. I exercise regularly as I want to stay fit and have been given some good exercises and stretches by a physio who has experience with neurological disorders. Although I have my own neuro, my treatment is being managed by a Neuropsychiatrist at the Neuropsychiatric Institute at Prince of Wales Hospital in Sydney. I’ve found him to be very good and the Institute has a lot of experience with drug induced movement disorders.
Reading previous posts here, the program in Germany sounds very promising. I’d be keen for any updates or to know if there is interest by neuros here (before I have more Botox and make myself ineligible!)