Search found 25 matches
- Tue Jun 25, 2013 8:42 pm
- Forum: 2013 OT Meeting - Sydney, Australia
- Topic: Reports and News from the Australia OT Meeting 2013
- Replies: 19
- Views: 17036
Re: Reports and News from the Australia OT Meeting 2013
Hi All, I was so pleased to be a part of the meeting and i was lucky enough to have my family pay for my trip from Adelaide to Sydney. They knew how important it was for me to get amongst people that understand!! I, like Sue, felt teary many times as i began getting to know people. I wish i had able...
- Tue Jun 25, 2013 8:26 pm
- Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
- Topic: OT website - Facebook community page
- Replies: 2
- Views: 2815
Re: OT website - Facebook community page
Hi All,
I also have a facebook page too and i am happy to add you all to that too. The information will overlap at times but it is always great to stay informed and together. Here is the link.
http://www.facebook.com/#!/groups/orthostatic.tremor/
I also have a facebook page too and i am happy to add you all to that too. The information will overlap at times but it is always great to stay informed and together. Here is the link.
http://www.facebook.com/#!/groups/orthostatic.tremor/
- Tue Jul 17, 2012 10:42 pm
- Forum: NORD - 2012 OT Research Grant
- Topic: Pregabalin
- Replies: 2
- Views: 2606
Re: Pregabalin
Hi There i am a fellow aussie residing in adelaide, i have been in contact with Dr rodregus also (spelling?). I am currently on Lyrica and i have found it has given me some quality of life, it could eradicate tremor completely i believe on a high dose however it makes me tired on a high dose so i am...
- Wed Jul 04, 2012 6:41 am
- Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
- Topic: Victimhood
- Replies: 9
- Views: 2631
Re: Victimhood
Yes Golfnut and Di Di i think you do have it right. Each and every day is different for us all and days differ for us emotionally too. Depression can take hold and it does come down to survival then. We are all doing an amazing job at surviving our illness. Thanks for listening to me on my good days...
- Sat Jun 16, 2012 11:03 pm
- Forum: NORD - 2012 OT Research Grant
- Topic: NORD OT RESEARCH HAS BEEN ANNOUNCED!!
- Replies: 11
- Views: 4530
Re: NORD OT RESEARCH HAS BEEN ANNOUNCED!!
Congratulations everyone and a special thank you to all involved in making donations. You give us hope.
Nicola x
Nicola x
- Fri Jun 08, 2012 12:05 am
- Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
- Topic: Victimhood
- Replies: 9
- Views: 2631
Re: Victimhood
I am the founder of the facebook group and i was one that stood up and defended my victimhood. I don't believe it fair for someone to make people feel bad for not being in that "happy place" with their condition, especially those that are bedridden or wheelchair bound. It is easy for one t...
- Thu Aug 04, 2011 11:16 pm
- Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
- Topic: New to the forum? post a quick introduction
- Replies: 1015
- Views: 243919
Re: New to the forum? post a quick introduction
In regards to the EMG I had, It did not include needles but my experience was painful. Reasons being is because they had me standing, hence convulsing, on the spot for what felt like eternity. I have heard that the needle EMG is very painful and can hurt for some time after. I hurt after also becaus...
- Thu Aug 04, 2011 6:39 pm
- Forum: NORD - OT Fund Updates
- Topic: WE HAVE REACHED OUR NORD GOAL!!
- Replies: 17
- Views: 10274
Re: WE HAVE REACHED OUR NORD GOAL!!
Thank you Peggy ( a wonderful volunteer you are)
I have updated my location
I have updated my location
- Wed Aug 03, 2011 9:38 pm
- Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
- Topic: Progression
- Replies: 27
- Views: 10040
Progression
Hi All, I thought i might add a new topic since it has been on my mind. I have been curious how your symptoms have progressed since you first found out you had OT. Do you notice tremor in other parts of your body? Has your standing time decreased? Have you gone to the use of any aids. Has it changed...
- Wed Aug 03, 2011 9:21 pm
- Forum: NORD - OT Fund Updates
- Topic: WE HAVE REACHED OUR NORD GOAL!!
- Replies: 17
- Views: 10274
Re: WE HAVE REACHED OUR NORD GOAL!!
Hi Peggy
I was just wondering if the researchers will research OT and/or OT plus?
I am so happy about the news and thankful to all that have donated and taken the time to invest.
I was just wondering if the researchers will research OT and/or OT plus?
I am so happy about the news and thankful to all that have donated and taken the time to invest.
- Tue Jul 26, 2011 7:45 pm
- Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
- Topic: How is everyone?
- Replies: 719
- Views: 196965
Re: How is everyone?
Hi All, My opinion is that if we brush off our thinking that our symptoms are OT related and try and find another reason, we are cheating others and ourselves from learning about OT further. There has been so much written about some of these things that we are experiencing and it never would have be...
- Fri May 06, 2011 5:44 am
- Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
- Topic: How is everyone?
- Replies: 719
- Views: 196965
Re: How is everyone?
Hi Jo, Nicola here haha I just wanted to let you know that i have swelling on my feet, not around ankles but on top of my feet. I thought it was from limited movement but i have been more active recently. Also i tried putting my legs up but that isn't much assistance. It comes and goes. Do you think...
- Fri May 06, 2011 5:37 am
- Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
- Topic: Multiple symptoms
- Replies: 3
- Views: 3333
Re: Multiple symptoms
The Lyrica has been interesting for me. So wonderful yet frustrating if that can be possible. I would say my OT was very severe. I couldn't stand just like everyone here for more than a few minutes but i couldnt walk due to fatigue either. Eventually i was having tremor when i walked and falls were ...
- Fri May 06, 2011 5:16 am
- Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
- Topic: A new leg to my journey
- Replies: 17
- Views: 7019
Re: A new leg to my journey
Another update: I have found the symptoms are still present but i have decided that being mobile is what i choose even if it means i lose my hair and put on weight. I have had to increase to the maximum now which is 4 x 75mg a day,as it seems to wear off quickly. I didn't expect to be on the full do...
- Fri Apr 29, 2011 2:03 am
- Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
- Topic: A new leg to my journey
- Replies: 17
- Views: 7019
Re: A new leg to my journey
Hi All,
Just as an update, I have put on so much weight on Lyrica and i have no option to stay on it since it allows me to move around. My hair is also constantly falling out still. It is a case of Freedom V weightgain/hairloss.
What would you do??
Just as an update, I have put on so much weight on Lyrica and i have no option to stay on it since it allows me to move around. My hair is also constantly falling out still. It is a case of Freedom V weightgain/hairloss.
What would you do??