New to the forum? post a quick introduction

This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

tmacdavis
Posts: 2
Joined: Wed Dec 25, 2013 1:01 am
Location: Riverbank, CA

Re: New to the forum? post a quick introduction

Post by tmacdavis »

Hi everyone,
I was diagnosed with OT in 2003. My regular doctor didn't have a clue what was wrong with me and referred me to a neurologist. She immediately diagnosed me. She knew exactly what was going on. I was lucky to get her the first time. She put me on Clonazapam and later added Pramipexole. Both have worked pretty well with no side effects and I've been on them for about 10 years. I don't have too many other health problems like some do and am grateful for that.

I've come to terms with the OT and try to function as normally as possible (not being able to stand is a real challenge!). I love the new OT business cards posted on the forum. Friends have said I could get a parking Handicap plaque but I don't need one. I walk just fine. I always said I need one for standing in line! Now I have one.

Walking around in circles is how I cope with lines. I also have a deal with my husband that I run around the store and fill the basket and then he stands in line and I go sit in the car. I've trained most of my friends to "walk or sit" when we talk.

I've just joined a new gym. Walking on the treadmill has improved my balance and stride, which were getting bad. I've noticed that walking outside I soon tire and my legs and my back starts to hurt. (after sitting down for about 5-10 minutes, these symptoms go away and I'm good to go)

But this doesn't happen on the treadmill!!! I can do 2 miles with no problem at all. My goal is to increase my stamina, strengthen my core muscles to hopefully help with lower back pain. It's such a joy to be able to walk fast and surefootedly (is that a word?). It has noticeably improved my everyday walking. My balance is better.

Another interesting thing I learned is that I can do Yoga! Somehow, I can do most of the poses, including standing (like the warrior poses). My theory is that because my muscles are stretched and under tension, it fools the OT. There are a few poses I can't do, but I can stand! Has anyone else experienced this? I haven't had the nerve to try the warrior pose in a line yet :lol:

The way I feel about having OT is that it's very inconvenient. It doesn't hurt. I can do lots of things like drive and walk. I'm learning to cope with it and do pretty well. Then there's a moment when I'm doing something and start shaking and it's such a drag :roll:

My OT has gotten worse the last few years. I now am more aggressive in dealing with it. I'm 63 and retired and am a crafter and a backyard breeder of canaries and lovebirds. I'm active in the bird club and run our Bird Mart every year. I paint things and make things and actually sell some. I do yard sales and estate sales and sell to vintage boutiques. The yard sales are getting harder (standing and walking slow) but I'm trying to cope.

When I go to a street fair or flea market, I take my mom's walker, just so I can sit down.

Well, I could go on and on, as we all could. Thank you for listening and thank you Gloria.

Terese
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: New to the forum? post a quick introduction

Post by gloria »

Hello Terese and welcome as a new member:
I just read your introduction and thanks for such a great comprehensive report on your OT experiences and how you have been coping. I like very much when you say " I've trained most of my friends to walk or sit when we talk." Getting people in your surrounding area to understand your needs and limitations shows you are taking charge of your OT. I call it protecting my independence!!! As you might have read I too think Yoga is very beneficial because it teaches stretching of the muscles which is such a naturally needed function of our bodies. You are doing all good positive things so keep us posted as you face the challenges of OT. All the best, Gloria
shep19uk
Posts: 7
Joined: Mon Sep 23, 2013 10:38 am
Location: Elland, Yorkshire. UK

Re: New to the forum? post a quick introduction

Post by shep19uk »

Thank you Therese.
Your post is one if the most positive posts I have read. I am only 40 and know that my condition will get worse but your positive attitude really helps.

Thanks
Sarah
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: New to the forum? post a quick introduction

Post by gloria »

Sarah & All: You are young but if you start controlling your situation with OT you will develop almost unconscience skills of coping. Also you might come up with ideas that help you and you can share with us. We are a growing community of OT knowledge. Please ALL, post an update of how you are traveling thru life with OT. This is a good way to stay in touch, Gloria
Lake of the Woods
Posts: 264
Joined: Fri Dec 29, 2006 12:10 pm
Location: Kenora, Ontario, Canada

Re: New to the forum? post a quick introduction

Post by Lake of the Woods »

Hello Terese
It was very interesting to read your commentary - I especially was curious about "when you get off the treadmill" - do you find your tremors are worse after exercising? I find mine are and I just have to rest for even a few minutes to kind of calm things down and then carry on. I haven't tried the treadmill as I was a bit cautious about getting on it. I am fine walking quickly outside as long as there are no obstacles in the way.

Thought your work with the lovebirds etc was pretty neat - we all could use a couple of them in our backyard!

Peggy
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: New to the forum? post a quick introduction

Post by gloria »

Hi! Peggy : So good to see you posting about your OT . Most of the time you are reporting on so many of the jobs you have taken on to help advance our cause and what a great job you have done!
Terese, I would love to have JUST " Love Birds" in my backyard too, however, I'm a dedicated gardener but unfortunately my garden visitors are deer & groundhogs that destroy most of my labors! All the best, Gloria
rdurhman
Posts: 3
Joined: Sun Dec 08, 2013 6:11 pm

Re: New to the forum? post a quick introduction

Post by rdurhman »

My name is Rita Durhman. I don't know how to get back to my profile to post my location like it was suggested. I live in Onalaska, WI from June-Sept and in Fredericksburg Texas the rest of the year. We are snowbirds and have homes at both ends.
I was diagnosed with orthostatic Tremor about 10 years ago. I had gradually increasing symptoms for about 15 years before that. My diagnosis was at Mayo Clinic in Rochester Mn. I took clonazepam, in gradually increasing doses, for 6 years. After about 4 years my body no longer reacted to the Clozapam and I was only able to stand for about 30 seconds. Walking and sitting were no problem. In fact I did then and still due walk 4-5 miles a day.

I researched alternatives and read about Deep Brain Stimulation. I have been a patient at Mayo for 20+ years so I begged my doctors to have the operation. They were quite hesitant and promised no good results. In November of 2012 I had the Operation. It has taken some adjustment to my hand held stimulator but my husband and friends think I am about 75% better.

Most times I can stand for 3-5 minutes. It is quite situational. Stress, large groups, buffets, lines really throw me off. I think this is mostly psychological. After all I practiced avoidance and other adaptive behaviors for 20+ years. I am interested in hearing from anyone who thinks they are having some similiar problems after having DBS.
Lake of the Woods
Posts: 264
Joined: Fri Dec 29, 2006 12:10 pm
Location: Kenora, Ontario, Canada

Re: New to the forum? post a quick introduction

Post by Lake of the Woods »

Hi Rita,
Thank you for taking time to tell your story and experience with the DBS surgery. This is the first time I have heard of success with this procedure so it was very interesting. Also, it was interesting to hear that you use a remote to help control the tremors.

I am really looking forward to meeting you when we eventually all meet in Omaha once again.
There is no news on that yet, but stories like this and meeting others with our problem is just so great when we have these meetings.

Peggy
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: New to the forum? post a quick introduction

Post by gloria »

Hello again Rita: Very happy that you responded to my welcoming letter I sent when you registered and have posted your story on the website which included your DBS surgery. Hopefully, others that might have had this experience will respond to you. Like Peggy I too will look forward to meeting you in Omaha where as Peggy points out is the place to tell you story. Hope too you will continue feeling the success of your DBS. By the way, I do not agree that stress,large groups and buffets are psychological because most everyone who has OT has reported these are automatic OT responses they all feel. Please keep us posted because it generally leads to great discussions that are helpful to everyone. Thanks, Gloria
Trulyscrumptious
Posts: 1
Joined: Sat Jan 04, 2014 3:48 pm
Location: Norwich, UK

Re: New to the forum? post a quick introduction

Post by Trulyscrumptious »

Hello, I am new to the Forum and to the realization that I am suffering from OT . Although I have had symptoms for a few years I thought the shakiness on standing was due to my thyroid condition so would try to control it by decreasing or increasing meds but to no avail. I have had a particularly stressful time over the past year and my symptoms have progressed to make it almost impossible to shop especially browsing or waiting in line at checkouts and I have had a few really difficult and embarrassing incidents over the Christmas shopping period where I have just had to put things back and march around the shop whilst my sister did her shopping. I seem to sweat around my hairline excessively when I am experiencing the trembling and have started to freeze now for fear of moving my legs and losing balance. It's a horrible condition and I am frightened to think that I have something I can't control I have always been a very independent person and I am entering unchartered waters with this condition and how it may progress /impact on my life. I am trying to get the courage to go and see gp for a referral to neurologist as I have little faith in doctors having had years of misdiagnoses and undertreated thyroid condition etc. The forum has been a great source of information and comfort as it is such a relief to find I am not a lone. I have been blessed to speak with another member who has given me name of a good knowledgeable neurologist in my area so I will pluck up the courage soon and go ask for a referral. Thanks for listening x
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: New to the forum? post a quick introduction

Post by gloria »

Trulyscrumptious: The perspiration on your forhead is one of symptoms that happens to us early in the beginning of OT when we do not understand the signs that we must sit sooner rather than later. You were overstanding because you were so new to OT and did not realize you had gone way over your limit of standing. As you read more of the forum you will find that all the symptoms you are having are the classic ones we all share. Do try to see a neurologist as soon as possible for a diagnosis. You will feel better knowing and you will also have a circle of friends here at the forum you can ask questions of and compare notes on a common ground of what it is like to live with OT. To be continued, Gloria
MaureenB
Posts: 59
Joined: Mon Mar 22, 2010 4:24 am
Location: Southport UK

Re: New to the forum? post a quick introduction

Post by MaureenB »

HI Trulyscrumptious
i have just replied to your introduction at length,,, however it seem to have been lost in space...

However Do please see a Neurologist , keep smiling ,do accept help and keep smiling Maureen U K.
margaret 75
Posts: 2
Joined: Wed Jan 15, 2014 4:25 pm

Re: New to the forum? post a quick introduction

Post by margaret 75 »

My daughter Amy first started with really bad twitching in her legs. 1 year on and after an EMG test the consultant that done the test believes that she has Orthostatic Tremor. Before test Neuromyotonia was suspected to be the cause and treatment was started. I am really worried as my daughter is only 15 years old. Also looking for advice as my daughters twitching is continuous even when she is sleeping really bad in her hands as well. She suffer from really bad leg cramps, muscular pain and stiffness. Not sure that my daughter symptoms fit and currently waiting for follow up appointment.
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: New to the forum? post a quick introduction

Post by gloria »

Margaret: If you are not sure your daughter's symptoms fit the current diagnosis you should seek another opinion. Keep us posted. Gloria
Sketches
Posts: 7
Joined: Tue May 21, 2013 2:48 pm
Location: Somers, NY USA

Re: New to the forum? post a quick introduction

Post by Sketches »

Hello,
I had joined a while back and had lost my password. I finally made an attempt to get back here. I wonder if there is anyone in my area who knows of a support group or if there is anyone here who lives close to me. I live in Somers, NY. It is upper Westchester County, NY, near to Danbury, Ct. I thought it would be helpful to connect with people who are going through the same experience and find out how they are coping. It is difficult when people do not have an understanding of this disorder.

I would love to hear from anyone in the area.

Thank you.
Phyllis
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