Search found 25 matches

by aussiepommy
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: 11564

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...
by aussiepommy
Tue Jun 25, 2013 8:26 pm
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: OT website - Facebook community page
Replies: 2
Views: 1637

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/
by aussiepommy
Tue Jul 17, 2012 10:42 pm
Forum: NORD - 2012 OT Research Grant
Topic: Pregabalin
Replies: 2
Views: 1764

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...
by aussiepommy
Wed Jul 04, 2012 6:41 am
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: Victimhood
Replies: 9
Views: 1210

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...
by aussiepommy
Sat Jun 16, 2012 11:03 pm
Forum: NORD - 2012 OT Research Grant
Topic: NORD OT RESEARCH HAS BEEN ANNOUNCED!!
Replies: 11
Views: 3063

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
by aussiepommy
Fri Jun 08, 2012 12:05 am
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: Victimhood
Replies: 9
Views: 1210

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 to NOT play...
by aussiepommy
Thu Aug 04, 2011 11:16 pm
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: New to the forum? post a quick introduction
Replies: 998
Views: 119063

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...
by aussiepommy
Thu Aug 04, 2011 6:39 pm
Forum: NORD - OT Fund Updates
Topic: WE HAVE REACHED OUR NORD GOAL!!
Replies: 17
Views: 6782

Re: WE HAVE REACHED OUR NORD GOAL!!

Thank you Peggy ( a wonderful volunteer you are)
I have updated my location :)
by aussiepommy
Wed Aug 03, 2011 9:38 pm
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: Progression
Replies: 27
Views: 6352

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...
by aussiepommy
Wed Aug 03, 2011 9:21 pm
Forum: NORD - OT Fund Updates
Topic: WE HAVE REACHED OUR NORD GOAL!!
Replies: 17
Views: 6782

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.
by aussiepommy
Tue Jul 26, 2011 7:45 pm
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: How is everyone?
Replies: 719
Views: 91151

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...
by aussiepommy
Fri May 06, 2011 5:44 am
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: How is everyone?
Replies: 719
Views: 91151

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...
by aussiepommy
Fri May 06, 2011 5:37 am
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: Multiple symptoms
Replies: 3
Views: 2487

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 ...
by aussiepommy
Fri May 06, 2011 5:16 am
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: A new leg to my journey
Replies: 17
Views: 4687

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...
by aussiepommy
Fri Apr 29, 2011 2:03 am
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: A new leg to my journey
Replies: 17
Views: 4687

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??

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