New to the forum? post a quick introduction

[Linda van der Vyver]

Hi all OTs
I'm so excited to be part of the OT family as I live in South Africa & know of nobody else with OT.
My OT definitely started on a specific day as I was under a slightly stressfull situation & I said to my husband "My legs are shaking so much if I don't sit down I'll fall down," which I promptly did! What a start! A doctor present said I'rd fainted, which I know I hadn't, as I was 100% "with it!" But I'm a firm believer that stress has definitely something to do with the onset. I think the worst of my stressful situations was long before, when my husband of then 2 months was involved in a car accident, unconscious for over a month, & unable to work for almost a year.
For 19 years I visited various neuros, had scans, MRI's, etc. - you name it, I tried it, over that period. The story was "There's nothing physically wrong with you but er..er.." They obviously didn't know anything about OT.
3 Years ago it was suggested by a young friend, who spoke to her mentor in the medical fraternity, that it was "Parkinsonian"(linked to Parkinson's disease), so I contacted the Parkinson's Support Group & found out neuros who specialised in Parkinson's disease. But before I was diagnosed my daughter went onto the web & gave me my diagnosis which was confirmed by the neuro. I told him that I was so happy to be diagnosed I could have hugged him as always before I felt .. well, if it's not physical, they think it's mental or psycho sematic & I was convinced it was physical.
I have a fantastic husband who hangs the washing, stands in the grocery queues while I return to the car, etc.
After all these years of it it's a part of me & being in my late 60's I'm no longer self conscious, so I sit down in weird places while others stand. My daughter sings "Lean on me when you're shakey, I'll be your matey, I'll stand by you." They call me the family dog as I'm always looking for a pole or wall "to go against."
I just wish that OT had some external sign of what's going on in our bodies, unnoticed by others. I think OTs must have the strongest toes in the world for attempting to hold us steady.
I try to keep in my comfort zone as much as possible & turn down events that I know will get the adrenalin up & my heart racing.
So lovely to get it all off my chest. My daughter also picked up your site & it's a relief to know there are others "out there" who understand 100% as I know of nobody with OT in S Africa.
My love to all my fellow sufferers & if there's someone closer than USA or Australia I'rd love to hear from you.
Linda

[gloria]

Hi! Linda: You posted a wonderful introduction to your life with OT, it is uplifting, realistic,and even included a bit of humor. I love to hear from people who are using managing skills over OT and sharing them to the OT community. To help you find someone who lives in S.Aftrica would be for you to go back to your Profile where you registered and leave your location then someone could possibly contact you. For other reasons “why and how” to leave your location  just click on the following:
http://www.orthostatictremor.org/phpBB3 ... f=16&t=313  ( login first ).

I have heard from just a few people from So. Africa, but unfortnately they did not leave their locations on their Profiles as well. Perhaps this is a reminder if there is anyone who has not left their Location on their Profiles to do so. OT is a hidden disorder and it is SO helpful to possibly meet with other OT people who understand.

Thanks for the great post and look forward to more, Gloria

[MaureenB]

Hi Linda
I dont login much these days, however I felt I was reading about my own life story .Both my grand children think is normal to have a nanna who cannot stand ,and have curled up toes, however mine are arrow shaped, through wearing pointed stilleto shoes when I was young...
Welcome to our special world.. Regards .MaureenB curley toes.

[sandy g]

Hello everyone
I am a new member, orthostatic tremors started in 2011.
I have been visiting this site and found information so helpful
and reassuring. thank you Gloria. I'm wondering what are the thoughts
on deep brain stimulation surgery as I have agreed to an information
session in July. Not that I will go ahead with it but want to be open
to all new information.
sandy g
Winnipeg

[gloria]

Hi! Sandy: To find DBS posts from other OT people I suggest you go to the top this page and in the top right hand corner is the word Search, ( login first) then type DBS in Search and that will take you to reportings and thoughts on the subject of DBS. Hope this helps , Gloria

[admin]

Here's a link to news and reports from the OT meeting in Australia:

http://www.orthostatictremor.org/phpBB3 ... f=61&t=690

The meeting is currently in progress, as new reports are posted they will be added to the topic link above. And, feel free to add you thoughts and discussion too!

[admin]

Video Series from the Orthostatic Tremor Meeting in Sydney Australia, June 22, 2013

Link to videos - http://bit.ly/17S0X4d

[cquinn]

Hi Everyone. My name is Carolyn Quinn and some time ago I registered but due to me being my husband's caregiver, I didn't have much time to spend on the computer--he's now in a VA nursing home. I was diagnosed in 2008 in Henderson NV but now live in Meridian ID. I'm the only OT patient my neurologist has but is familiar with the disease since she had 4 patients in Denver CO. I have continually come on-line just before my appointment to see if there is anything new. I've tried many medications but the only ones that have worked for me is clonazapam and lyrica. I've tried pool physical therapy, electrode therapy and others but none helped. I currently use a walker with seat when going to malls or any place I'm unsure if they have available seating. I'm interested in how the studies have been going in Paris and Australia. I continue donations through NORD/OT.

[admin]

OT Meeting Fall 2013? A recently posted video of Dr. Diego Torres-Russotto conducting the Question and Answer session from the meeting last October and read more about a possible OT Meeting this year in Omaha.

http://bit.ly/13x3PKZ

The event was a casual "Question and Answer" discussion the day following the research study at the University of Nebraska Medical Center. If you are interested in learning more about the meeting and study on October 25-27 2012, and/or are interested in possibly attending the next meeting and research study follow the links below:

Link to information on a tentative meeting the fall of 2013 -
http://bit.ly/14eXbzo

Link to 2012 meeting discussion -
http://bit.ly/17lPwNY

[gloria]

Carolyn:
Thank you for registering and reporting how you are coping with your life with OT. I hope you have reviewed the information that Admin posted about our last meeting and how to be part of the second session meeting and research. Please consider attending & participating in this session. I think this would be a great experience for you! Dr. Diego Torres-Russotto is the head researcher and has a devoted interest in OT . Besides the research you will be with other understanding OT friends and that is a wonderful situation to be apart of. I too make routine donations to NORD/OT Research. More research is the key to unlocking the mysteries of our OT. I hope all OT people will be supportive of our funding through NORD. The Omaha Research was an exception in that The University of Nebraska funded the research in Omaha and the staff volunteered their time, we cannot thank them enough !

Hope your posting on the website will become frequent , Gloria

[gloria]

Yesterday, Monday July 29th 2013  will always be a special day in the lives of Beth, Jeff and myself.  Sue Boyd had contacted Jeff saying that she would be in the US  visiting old friends in different places, one being NYC and would it be possible to meet for lunch.  Of course the answer was YES ! 

What a remarkable person Sue is, and perhaps you are not aware that Sue is retired from a 33 year career as an Australian diplomat amongst many, many other wonderful accomplishments. Sue as you do know, recently organized the first OT Meeting in Australia and WOW what a job she did!  Naturally OT was a big part of our discussion at lunch and Sue is a very dedicated and caring person of our cause.   
Thanks Sue for including us in the many miles you travelled to visit in the USA.

Gloria

[nancyweeds]

Hello - I am Nancy in Marana, AZ. For 20 years I have had to sit down a lot or get a panic attack. After many doctors that have given me many meds...they all said I had "anxiety". Lately I felt I was getting worse...leaning on a wall, or sitting on the floor, or best of all sitting while I do almost anything like housework, etc. My husband always told me to take a deep breath. Just went to a new Neurologist and within 5 miniutes he was on his smart phone and told me exactly what I had...OT..he had only 2 other patients in his career. I am having a couple of tests to rule out Parkinson's. The most important thing is that now I know I have something, I have been doing much better. I am going to quit golf (which I was never that good at anyway)...and start Pilaties??? I guess that the best part is that for 20 years I have been taking Clonzapam which was prescribed by the very 1st doctor. I plan to walk a lot more...but want to know if exercising my legs a lot more will help delay what may come.

[gloria]

Hi! Nancy:
Thanks for posting your OT story to the OT Community. True we all are having most of the same symptoms and experiences and reporting this has help to define us with the diagnosis of OT. Our growing existence and strength is of importance to researchers who are interested in our numbers. Your husband told you take a deep breath and he is right! Deep breathing has a calming affect with the intake of oxygen that helps dealing with stress . In fact, I take Chair Yoga and all through the sessions we are reminded about our breathing. Perhaps your Pilates will also teach breathing skills. Sorry you are going to give up golf but it sounds like it will not be as painful for you as it was for me to give it up because I truly loved the game. Exercising your leg muscles is good and conscientious daily walking is the best. One reminder, you left your address Marana, AZ here in your posting and it will only stay in this letter. In order to leave your location so it shows on the memberlist and whenever you post you must go back to your Profile where you registered and leave it there. Click on here to show you how:
http://www.orthostatictremor.org/phpBB3 ... f=16&t=313 

Look forward to more of your postings, Gloria

[owen-lynettepickles]

Welcome Nancy
Yes, it is always a relief to be given a 'name' to what you have. We all know our own bodies the best and know when something 'does not feel right'. I know when I was diagnosed by my Neurologist just over four years ago, it was such a relief for my husband and I to be given a name for the condition, as before we were thinking all sorts of "bad" things. Not saying that OT isn't bad, it's just that we were thinking things could have been much worse.
My Neurologist told me to continue walking every day, so I have kept it up, despite having quote a lot of pain at different times. Now that I am on top of the pain, walking is much more pleasant. I have a young Basset Hound who has to be walked every day, so she is another incentive to get out. Do have to be a little careful that she doesn't get under my feet and trip me up, but she is getting better at behaving herself. Just in her teenage years and gets a little exuberant at times!!
Kind regards from the other side of the world, Blenheim, New Zealand.
Lynette

[Lake of the Woods]

It was just wonderful to see the lovely picture of Gloria and Sue Boyd in this section.

I am always amazed at Gloria - I see so many times that she has faithfully responded to people logging in and introducing themselves and Gloria always responds. How lucky people are to have her on their side - all this takes time and her dedication to helping others is so impressive.

Peggy