New to the forum? post a quick introduction

[Nin]

Hi -- I'm Nina and I'm new to the forum. I'm 66 years old and I've been having problems with standing for at least 6 years and have always been told that it was probably from lack of exercise. But when I'd try to exercise more, I'd get tired from standing and give up. I was just diagnosed with POT by a Neurologist and I'm going to try to get into the Neurology clinic at the local Medical college as they list OT on their website and I'm assuming they'll be the best at giving advice, especially on which exercises are the most beneficial.

Right now I'm just trying to get used to the idea that I have a chronic problem. I've generally been healthy and the thought that I have something that will probably get worse is a bit scary. I've appreciated all that I've read on this site and would love to get together with others with OT, but the trip to Australia is a bit too daunting on such a short notice.

Does anyone know if Dr. Torres is accepting new people into his study? I'd like to get involved in any study on this that is non-invasive.

Nina

[Lake of the Woods]

Hi Nina
First of all, you can thank Jeff who looks after our website for notifying me about your question because obviously it is hard for me to see everything on the forum.

Yes, I am sure Dr. Russotto would welcome new OT people into the next round of studies on OT. All the information I have presently is that he has a "tentative" date of doing this in August/2013. He has to wait to get all his approvals for research in place before he can decide on a definite date but I had asked him to let me know asap if he has a tentative date so that people can start thinking about whether they can come.

The instant I hear from him on the definite dates I will notify people.

You can email me at peggyincanada@gmail.com and I will add your name to the list of people who want information about this second study. The information I need is this:

Your Name
email address
location
phone number

Please put it in the above format and I can copy and paste to my list.

Thank you
Peggy

[ianacoustic]

Hello,
I'm a newby here. I am the carer for my wife who we understand has cervical dystonia that also moves to her left arm and torso (sometimes). She also says she has continual tremor in both arms and I have read where OT can, not always, but can present in the arms as well. I would appreciate any comment on whether we are correct in this. Sometimes it is so strong she can't understand that I can not feel it happening. I have recently downloaded the iphone app iseismometer app and it does register a Hz reading comparable with dystonic (OT?) tremors in her arms.

We have seen a few Neurologists who specialise in muscle movement disorders but with no real success except botox which wasn't suitable anyway. A bit frustrating. Her tremors and dystonic spasms have only happened post car accident and we have read much about trauma induced spasms, but thus far no neurologist / surgeon will or can acknowledge that this is possible - in Australia anyway. I see it is an accepted position overseas, but not here in Australia.

Love to hear any news andthank you, it is wonderful to have such a forum.

ianacoustic.

[Carroll]

I am a sixty six year old living in Wellington New Zealand and have had OT for at least twenty six years although it wasn't diagnosed until six years ago.
Dr.David Abernethy a neurologist here in Wellington made the diagnosis after hearing my symptoms and giving me an EMG.
Gloria's site has been so helpful and reassuring as my disability progresses.
There have been times I have questioned the diagnosis and have felt that I have Parkinson's as many of my symptoms are very similar.
My father died in very advanced stages of Parkinson's in 2008.
He was a farmer in N.S.W Australia and I grew up on the farm!!!!
I would be very interested to hear if anyone else thinks that their OT might be the result of being exposed to pesticides.
Thank you.
Carroll

[Lake of the Woods]

Carroll,
Check out in the forum as there is information about a OT meeting and presentation by a doctor taking place in Sydney, Australia at the end of June.

You might want to attend.

Peggy

[Willow62]

Not sure if this is where my introduction is meant to be as it keeps dropping me but will persevere.
I'm a 62 year old retired Primary Teacher and was diagnosed wit POT about 6 years ago after visits to many doctors to find out what was causing me to have the shakes whilst standing in one place for a period of time.was administered a test at Royal Prince Alfred Hospital in Sydney by Professor Halmaygi which confirmed his diagnosis and prescribed Sifrol to control the Tremors. Also have attended The Parkinson's Clinic in Sydney and had other tests but info given at that time seems to not fit the condition even though the medication is used by Parky's patients.
Am to attend the OT Meeting being organised by Sue in Sydney on 22 nd June 2013 and would love to make contact with others attending this info day.
My Professor has recently retired and am wanting to make contact with a new Specialist in Sydney for my GP to refer me to if anyone can help.
Am most interested in any research which is occurring and would like to discuss with any other OT Forum members.
Thank you to anyone who responds to my searches.
Lyn

[Di Di]

Welcome .....Caroll and Lyn ,
great that you are both able to attend Sue`s Sydney gathering ....a good opportunity to get a lot of questions answered ....Lyn I'm sure there will be other Sydneysiders attending who will be able to point you in the right direction ...
Caroll , we have talked by phone , have yet to meet ....Sad you have OT, but great for me to know there is someone local who I can connect with .....always felt I was Dr David Abernetheys first diagnose for OT !...not so
you talk of pesticides...in the 1970`s I was asked to go into a kiwi fruit orchard and paint numbers on posts ...The family had shifted out some days before when the crop was sprayed , I was told it was now OK to go and do the job. all alone quietly painting [no birds, no insect noise] , heard a tractor in the distance then felt a light rain on me
...next door was spraying ....remember thinking this is not good .....it has stuck in my head all
these years
Look forward to meeting you both .....................take care all ...Didi NZ

[Janevece]

Hi My name is Jerry. I was diagnosed with OT at Mayo clinic this spring. Have had symptoms for many years. Told I had an orthostatic tremor about 6 years ago, but did not understand this is a diagnosis. I thought MD was just describing a symptom. No more explaination was given then. Symptoms lessened for a while, but this past year OT has become debilitating in many ways. Fatigue is worse than the tremor. Has anyone else experienced the fatigue? Also have multiple lesions on brain. Naurologists say these can be normal for many people. Treated for MS for a while, then MS ruled out. Look forward to hearing input, suggestions for coping etc. Thanks

[gloria]

Welcome Jerry:

I believe you will find most of the questions you may have and lots of coping skills posted here on the website. They all have come from your new OT friends on the site. As far as your fatigue I experience that too because going through a normal OT day it takes more effort mentally and physically. However I try to stay as busy as possible because than I think of all the things I accomplished and can be proud of myself.

All best wishes, Gloria

[lla]

My name is Linda and I am 62 years old. I have had motor problems for as long as I can remember. At times, when I was young, I felt as if I was moving in slow motion and was always the last to finish in running activities. Never experienced tremors until I was in my thirties. That was only a brief shaking in my legs. In my forties, things began to escalate. I could no longer write checks in the checkout line and many other standing activities began to cause me problems. Not all of the time, but enough that I felt something was going very bad.

When I was 48, I quit my job to take care of my parents. I was the primary caregiver. As an only child, it was a very stressful experience. When both passed away, 5 months apart, my OT came on with a vengeance. At 51, I felt my life was over. My doctor had no idea what was happening to me. Finally, I could stand it no longer and asked to be referred to a neurologist. He immediately diagnosed me with OT. For a while I took Clonazepam. This was a terrible experience for me. I decided to discontinue going to this neurologist. He didn't offer any encouragement, didn't think I needed to exercise, and told me I would probably need a wheelchair, in time. I couldn't accept this.

In the last 3 years, I have found great relief from a combination of sources. My journey started with a chiropractor who helped me get off the Clonazepam and offered physical therapy in his office. Next I went to a nurse practitioner who found food intolerances. Through a chance meeting, I heard about a clinic where I could get help for my Hashimotos Thyroiditis (an autoimmune disease). Here they offered Functional Medicine. I now have seen a nutritionist and received more physical therapy. The doctor at this clinic is very kind and supportive. I am using mostly supplements and natural solutions. They referred me to a wonderful neurologist.

When I first started looking for care, I couldn't stand for more than a few seconds. I'm not saying I am all better, but I feel like I am surviving now. Long lines, slow moving crowds, standing for long periods of time, and stressful situations are my enemies. I was so glad to find the travel card and I read on one of the posts about a note from the doctor to carry with it. I don't remember whose post that was on, but I thank them very much! I have a note now.

Maybe I am being a little too positive. I still struggle, but I think every OT sufferer will admit that we are very thankful with little improvements. Just finding people who are so willing to help you and are so kind make the suffering easier.

I want to thank you, Gloria, for a site to express ourselves and learn from other OT sufferers.

[Willow62]

Ila and Gloria,
I am about to travel from Australia to the United States to attend a Willow Collectors Convention in Jackson Tennessee and am most interested in the travel sign that was alluded to. About 3 years ago a friend located and downloaded a sign to laminate and wear as a badge whilst travelling but have been unable to locate it this time. Can anyone in the OT Community direct me to where I might find it? Sometimes when I have to wait in queues as at airports and the like my tremors draw attention and the badge alleviated the dark looks. Have even been accused of being an alcoholic on occasions and found the sign helped to minimise situations like this. As I am attending the meeting in Sydney before I head to the States I thought if anyone can locate the sign I'd take copies of it along to our OT meeting and share it with others. Only a little thing but anything that makes life a little easier helps.

Thank you Ila for raising it in your intro. And thank you for sharing your experiences. I pray you have relief from your tremors and continue to have the positive support you have accessed recently. I'm on a drug called Sifrol which seems to have controlled the Tremors somewhat but my Neurologist is about to retire and there seems to be no-one else waiting to step up to the plate here in Sydney.

[admin]

Hi Willow62

Well.. you made me curious about the Willow Collectors Convention so I did a quick search, very interesting ... and I learned something!

I believe the following is the link that you might be looking for. Have a great time at the meeting in Sydney and at the convention in Tennessee:

http://www.orthostatictremor.org/card/



Also, the TSA has a website with information that may be helpful -

“A passenger can request to be screened while seated if he or she cannot walk or stand during screening.”
-
http://1.usa.gov/13gkMQu

[gloria]

Hi! Willow: Since you are doing a bit of traveling perhaps you might also be interested in entering into discussion on travel below by Meryl. More postings and communication about traveling skills and experiences will be a great help to the whole OT community. Thanks, Gloria


http://www.orthostatictremor.org/phpBB3 ... 3588#p3588

[Gary]

Hello Everyone,

I'm a Newbie and am very glad to have found the website and am grateful to Gloria for helping place OT on the map.

I sent the following email to Gloria and she encouraged me to post it:

>>Hi Gloria,
TY for welcoming me to the OT Forum (or is it a blog?) I was
definitively diagnosed by a neurologist in Oct., 2012. He had me walk (no problems) and then had me stand still and I began to shake. My first symptoms appeared in April, 1999... 3 weeks after starting chemotherapy (for Leukemia). I relapsed in 2011 and have been having further chemo since then. The OT has become more intrusive in my everyday activities. In searching the web, I did not see any correlation between chemo and OT. However, I feel it was highly coincidental because I never had any issues before chemo and started having symptoms almost immediately thereafter (in 1999 to the present).
Best wishes,
Gary<<

My oncologist did not have any other patients with OT, so he didn't really think it was a serious problem and I had to self-refer myself to a neurologist for the diagnosis

I'd be interested in hearing from anyone who has OT and has a history of receiving chemotherapy.

Thanks to all!

Gary

[Willow62]

Gary,
Was diagnosed with POT about 6 years ago after many months trying to find what was causing me to shake when I stood still as in a queue or similar. Then 2 years ago was diagnosed with stage 3 aggressive breast cancer. After op to remove lumps underwent intensive Chemo followed by Radiotherapy and am now on a drug called Aromasin when is intended to inhibit the hormones and stop the cancer returning.
Whilst on Chemo I had the worst side effects my Oncologist said he'd ever seen and he suspects it was an interaction with Sifrol, the drug I take for the tremors. Also since I started the Aromasin which I'm supposed to take for 5 years, the tremors have increased where prior to cancer diagnosis they were reasonably controlled.
Here in Australia I have never met anyone else with my Tremors and am looking forward to our first Support group meeting on June 22nd in Sydney with Dr Rodrigez who will be informing us about some of his own recent Tremors research. Will try to include this Blog in the discussions as I've accepted the Minutes taker role and am sure the Organiser Dr Sue will be sharing the proceedings with any who are interested.
Gary I don't know whether this contribution is of any use but hope you get medical support of the calibre you seek.
Lyn.