How is everyone?

[brittasmom]

Gloria and Jeff, I am ever so grateful for this website. I don’t know where I’d be today with OT if it weren’t for meeting you through the internet and then personally at Omaha.

Four years ago, out of frustration while ironing, I Googled leg tremors and found Orthostatic Tremor. I basically did a self-diagnose after reading all of the testimonies. I’m one of the lucky ones that received help soon afterwards. I took a copy of your home page to my Dr. and he accepted it with curiosity, excited that he learned something new. He called a friend neurologist and asked if he was familiar with OT and I made an appointment for an EMG. I received the report saying that I had a tremor that was more than 12 Hz, and that would be consistent with a diagnosis of primary orthostatic tremor.

Last year I read Jane’s posting of how prism glasses helped her OT. I took that report to my eye Dr. who had no knowledge of OT. Through his patience and experimenting with prism glasses, today I have a decrease of leg tremors while standing. I am not cured but life is much easier.

I have been doing the physical therapy exercises posted on the site in Sept. and that has definitely strengthened my muscles.

So again, thank you for 15 years of sharing. I just want to encourage all to continue the search for ways to ease the pain and stress of this crazy rare disease. And get the word out to others. Don’t give up on life. There is hope.

Nancy

[admin]

Hi Nancy

First, it was really great to meet you in Omaha.

It's quite an interesting chain of events, starting with your search for answers and fortunately finding a receptive doctor that listened to you. Then finding Janes information and following up on that too. You are very resourceful indeed!

All the best to you, and thank you for these great words of advice -

I just want to encourage all to continue the search for ways to ease the pain and stress of this crazy rare disease. And get the word out to others. Don’t give up on life. There is hope.

Jeff

[gloria]

Hi! Nancy: As Jeff said it was so nice to meet you in Omaha!!! Yes, I too thank you for sharing and exhibiting a wonderful spirit of trying things that will help ease our lives with OT. You have a way of "fighting back at OT", a strength for all to follow. It would be great to see you again soon but in the meantime I look forward to reading your wonderful reportings here on the website.. All the best, Gloria

[gloria]

A current update and some of the changes I’m making to adjust to the present state of my OT . However this has been a very hard Winter , not suitable for outdoor walking because of the ice and snow..... very stressful with fear of slipping on the ice. I did more working out on my indoor bicycle however walking outdoors at a good pace remains the most rewarding exercise for my legs. Stretching exercises before I get out of bed each morning helps to wake up the body. Also I have been taking Chair Yoga for six years and have a remarkable instructor who converts many of the traditional Yoga positions for our class with different needs. She teaches deep breathing along with the different positions!!!!

One of the most important things I have done is to shorten the time in between doses of my medication (Gabapentin) starting now at 7:30 am ...... 12:00 noon .......5;00 pm . It seems this tightening of the time space covers my day more evenly. I believe aging definitely shortens the time frame of the onset of our tremors.

Exchanging our combined OT experiences and how we live our lives with OT helps each other to understand the demands of our OT lives....... waiting to hear from all, Gloria

PS: If anyone is not a registered member of the website please do, it gives all sufferers of OT a place of strength .

[Terry]

I am about to visit a neurologist next Tuesday (for the first time). I have been on Clonazepam for a number of years, but recently my OT has been getting worse and I have had a number of severe episodes in public and at home. I have found that taking beta-blockers has helped a little, but it has got to the stage where I believe I need a different treatment. I read a journal article recently where Levodopa was used successfully (in the 1990's) and was wondering whether anyone had used this medication. Also, has anyone been prescribed an MS drug called Lemtrada?

[gloria]

Terry: It is good that you are going to see a neurologist ( for the first time)?????? I was given Clonazepan when finally diagnosed , found it too strong for me and asked if I could take Gabapentin instead. Perhaps when you see your neurologist you can discuss the different medications you are questioning and he will best guide you . I hope that he will give you a EMG too. Please let us know how your visit goes. Gloria

[Terry]

Thanks Gloria. Yes, my GP and I came up with the original diagnosis and he has been treating me ever since. Hopefully, the neurologist will come up with some solutions to slow down what appears to be getting worse.
Regards. Terry.

[rindaann]

Does anyone have information regarding a meeting in 2015 similar to Omaha in 2014?

[Terry]

Well, some surprising findings came out of my visit to the neurologist. Firstly, he was surprised that I had been advised to take Clonazepam at night, when he thought it should have been in the morning. He is writing to my GP to look at a change to my medication, and at the moment, I am still Clonazepam at night, but taking beta-blockers during the day. In just 2 days, there has been a marked change, so here's hoping. An interesting sidelight was the neurologist said I was only the 3rd person he had ever seen with OT.
I'll keep you posted with any updates.

[gloria]

Rinda: The next meeting under discussion will be a Orthostatic Tremor Conference in Houston, Texas with Dr. Jankovic from Baylor University. A date has not been confirmed yet but hoping that it will be March 2016. Gloria

[gloria]

Hi! All: When I say in many of my inputs that we must learn to "work around our OT" I mean that if I find that OT is making something physically difficult I need to find a coping skill to subsitute from the normal way of proceeding if possible. However if I have a problem of dealing with OT emotionally I known for me I need to be out in Nature. When I'm outside working or just being outside I find it most uplifing and things are easier to do ....... perhaps it is the wonders of Nature that are distracting. I imagine there are many OT friends that have interests,hobbies & talents that are pleasant diversions from their OT lives so if you do please share them. Facing up to OT together works!!! Thanks, Gloria

[admin]

Mike has created a very helpful and informative video - "Orthostatic Tremor - A visual representation", that shows how Orthostatic Tremor effects him and many others too. He is currently working on a new project that we are all looking forward to seeing. Great job Mike, and thank you for sharing. Wishing you all the best.

[gloria]

Mike: This is a wonderful video that you have made. You are aways thinking of ways to explain the workings of living with OT. I know your second video that is not quite ready for publishing will be amazing. I hope other OT people will show us things they do that help them explain or show others what living with OT is really like. My question to all my OT friends is " Is there anything that you do as you travel thru our life with OT that helps others that surround you understand and also spreads much needed AWARENESS too ???? Thanks always, Mike !!! Gloria

[gloria]

Hi! All: I'm thinking about having knee replacement surgery on one or both knees and was wondering how many of my OT friends have had such surgery and how successful was it for you. Thanks for any input, Gloria

[zivia]

Hi Mike,
I just watched your video and knew exactly what you were feeling. I could relate to everything you said and found myself holding my breath and curling my toes when you stood and the exhaustion you felt when you had to sit down. It's very hard to explain what we feel to others, who don't have OT, but you did a great job.
Thanx Rita