New to the forum? post a quick introduction

[KarenBuffo]

I am new to the OT community, joining on behalf of my beautiful mom who suffers from this debilitating condition. I feel we have tried everything to help my mom with her condition but it just continues to progress. My mom, a vibrant, caring, positive person is now riddled with anxiety, suffering with tremors so strong, they shock her and make it difficult for her to sleep and of course is impossible for her to stand. They also impact her ability to speak. I feel we have tried everything to help her without success and I am searching for anything that may provide her some improvement.

I recently read about Prism glasses and am looking for advice from the community on these. Is this something you can simply purchase on Amazon? Or do you require a prescription?

I would also like to hear if anybody else with OT is suffering with their speech? Mom knows exactly what she wants to say, she just cannot get the words out.

Any feedback advice would be much appreciated. Karen

[renaely]

Karen, I can't speak for prism glasses, but I'd recommend DBS if your mom is up to it. Whether it's the drugs or what have you, short term memory and speech are a bugger. Still are, and I've had bilateral DBS, but I still find myself searching for words occasionally, though not as much once off the seizure meds and Clonopin. With DBS, I can now garden, clean my house....I've got my life back.

[gloria]

Karen: Welcome to the website looking for things that might help your mom with your OT. You mentioned Prism Glasses.......you definitely will need to find an eye doctor that makes Prism glasses. If you view the following it will take you to " Give prisms, vision therapy on the website:

viewtopic.php?f=1&t=800

Hope this helps, it will review other OT people with their experiences with Prisms some successful some not. Also let your mom read as much of the website forum as possible with all the experiences and coping skills that other OT friends use for this ban in their lives. This way she will know she is not alone that might reduce some of her anxiety. I see renaely has noted her success with DBS however not all OT people are good candidates for this procedure it must be suggested by her neurologist if she should have the procedure. Keep us posted, Gloria

[colin]

Hello fellow tremor suffers
My Name is Colin Mauger i'm 55 years old i'm married and have Three boys, i live in Australia in a small coastal town called Forster /Tuncurry
I was diagnosed with OT Two years ago pre OT diagnosis they thought my shaking was coming from my lower back after i had a laminectomy and fusion the shaking hadn't subsided so they sent me to a neurologist where they found that i had OT. I can't stand for more than thirty seconds without needing to sit down before i feel i'm going to fall down i also experience a lot of lower back pain when i stand but i don't have any trouble walking and sitting,i find that i get fatigued a lot quicker than i used to.Its been Three and a half years since I've worked financially and mentally it's been devastating so far I've had no relief from any medication but plenty of side effects,the latest thing they have suggested is deep brain stimulation has there been any good reports in this field i'll pretty much try anything at this stage.looking forward to talking with you all

Sincerely Shakey

[gloria]

Colin: I'm sorry to hear about your situation. Unfortuately those of us who have OT suffer from fatigue quicker because of the strain of the physical disability as well as the mental stress. Is there any goverment disability support that you can apply for in Australia ? There have been a few OT people on the website that have had DBS with some success but not complete relief that you can read about on the Forum, Also if you do wish to go that route I suggest you ask your neurologist for the names of the patients who have had DBS so you can speak to them about their experience. I'm sorry I cannot be of more help,. Gloria

[colin]

Thank's Gloria It's nice to be able to Talk with people that understand what we go through every day. simple tasks like washing the dishes vacuuming
turn into a painful marathon,if i was to describe this condition in one word it would be "frustrating"

[Tinkeerbell]

Hi everyone
I am a 70 year young female. I registered a long time ago and read post but never responded to anyone. I live in Merritt Island,Fl. I have had OT for 4 years and I was wondering about anxiety in crowds. I have had terrible anxiety if I know I am
Going to be in a crowed surroundings. MY neurologist just put me on garapentin. Any advice on these subjects. THanks
ANd thanks Gloria for starting this site.

[gloria]

Tinkeerbell: The website is about communication and sharing with other OT people who might possibily have experienced the same reactions of anxiety to certain situations. I'm glad you posted your " anxiety of crowds"....... you are not alone because a crowd means caught in a trap with no place to sit when you are running out of standing time. I personally avoid crowds at first sight. Anybody else have the same reaction ? Gloria

[Michelle Herpe]

Hello fellow OT sufferers!
My story is a long one as I have had OT for more than 20 years now. I used to post on this site when it was first created by our dear friend Gloria. I stopped for many years because I had other problems which made the sitting position painful (I had the Alcock canal syndrome, got operated on, and now have a very painful coccyx.) Recent developments have made me want to participate again in this sharing of information.
I live in Paris, and have never met with another OT sufferer. If one of you should come to Paris, I would be delighted to meet you in person. Just let me know a few days ahead and we could arrange to get together. I was born in Paris and love showing my city to other people.
I was amazed to discover when reading your messages that diagnosis takes still so long to occur for most of you. It was the case when I was diagnosed in 1999, but it seems the awareness of this condition has not spread as it should among neurologists!
My condition has been gradually getting worse over the years, but this past 2 months it has become very difficult. I cannot stand for more than a second or two, my ankles get stiff and very painful, and all my body starts to shake. When starting to walk I stagger. Shopping has always been difficult, now it's almost impossible. Of course I have a priority card, I ask for a seat on public transport, my friends or my son push me around in a wheelchair to visit a museum or an exhibition. (They, like me, don't have to wait in line, which makes the trip attractive) But on the whole, my ordeal is much worse than a few years ago.
For years I was taking 3x900mg Gabapentine a day, and last week I boldly decided to try some more, after checking online for the max. I take 600 mg more a day. (My doctor will be back on September 5th and I will tell him then). And I feel a real improvement, which is good news.
That will be all for today, I feel already better to know that men and women like me understand the same language.
Best regards to all, Michelle

[gloria]

Michelle : I thank you for sharing a very good " updating" how life with OT is today for you. I have been taking 3,300 mg of gabapentin for years however there is no medication that makes our tremors go away completely they just moderate the feeling of the tremor. Sorry you are have trouble starting to walk ...... are you standing too long before starting to walk, it only takes only seconds to start contraction of our leg muscles ?

For All:
Getting the progressions of OT from our OT friends will establish an average common one of OT . If you have not shared an update recently on what those nasty tremors are doing to your life please do so, it will add info for all to compare. Add questions too! All the best , Gloria

[gloria]

Michelle: I'm sorry I forgot to comment on the pain and stiffness in your ankles. Pain of any kind will exacerbate our OT, do you know what is causing it? We are both of an age when most OT'ers have only seconds of standing time too. Walking at a good pace is our only helper at the present. However perhaps getting a walker with a seat would be of help to you. Gloria

[Michelle Herpe]

Thank you Gloria for your replies. I feel better already to be able to share my concerns again.
Over the years, I also have developed techniques to cope with the tremor. When waiting for the light to turn green, I hang on for dear life on the post. I lean against counters everywhere, in shops, at the bank. I ask for a wheeIchair in airports.
I have tried using a folding seat but I quickly found it more embarrassing (in both senses) than useful. I don't want to lose the feeling of freedom I get when walking !
Staggering when I start walking occurs when I have been sitting. It appeared gradually over the years, more than 20 since the beginning of the symptoms. Walking slowly is very difficult as well, and I feel very frustrated when I have to slow down, on a sidewalk for example when walking in Paris. I would like to know if others have the same problem.
Of course my main problem is the wall of incomprehension between us and the rest of the world. But I am in good health otherwise (apart from pains when sitting), so I shouldn't be complaining (which, like most of our friends, I don't do).
Kind regards to all,
Michelle

[gloria]

Michelle: Slow walking is difficult for all of us on crowded city streets. I realize you live in Paris, beautiful but crowded. I live in a suburban area and have avoided going to big cities for a long time.
Gloria

[drcraige]

Hello Everyone!

I recently came across this site while searching some of my symptoms. I turned 60 years old in February and I am a retired podiatrist. I recall vaguely hearing/learning about Orthostatic Tremor during my medical education and I never came across anyone with the symptoms and/or the diagnosis while practicing.

Formally, I have not been diagnosed and I am in the process of having updated MRI and EMG studies.

Over the years I have had previous problems concerning herniated lumbar discs. Approximately 5 to 6 years ago I had severe Pain & Sciatica symptoms to the point that I was not able to walk any distance. The pain was great enough to require epidurals. Fortunately, my back pain has been somewhat under control recently provided that I remember my limitations and take anti-inflammatory medication regularly.

My unsteadiness and tremors started to come on approximately a year and a half ago. The fact that I had surgery for a torn meniscus in one of my knees prompted me to attribute my unsteadiness to instability of my knee. Basically, I have been dealing with the gripping of toes and the unsteadiness when standing. I have incidents of breaking into sweats at TSA to the point that I now request a wheelchair so that I am not mistakenly pulled out by security and become victim to a cavity search!

All kidding aside, when I started to notice that I couldn't easily stand and have a conversation socially without looking for a place to sit down is when I started an internet search. I read the descriptions here and fortunately or unfortunately they seem to fit.

I discussed with a Neurologist that is close to where I reside in Pompano Beach, Florida about my symptoms and concerns and additionally mentioned my suspicion of OT. Like most in the medical profession, we are taught that when we hear hoof beats, we should think of horses and not zebras. Thus, meaning think of the obvious pathology before exploring rare conditions.

At this point, as previously mentioned I am on the path towards some type of conclusion. I am hoping to gain some insight from this forum as to sub-specialists within my area if my present neurologist becomes baffled.

Also, I am interested in learning about the early onset of those that have been diagnosed with OT and if possibly there are any correlations with other medical conditions. For example, surgical procedure, body weight, anxiety, stress, etc. and look forward to hearing from people.

It is wonderful that people can connect on forums such as these so that we may all learn; including the doctors! Thanks!
Craig

[gloria]

Hi! Craige: You are in the right place where people with OT understand and share what it is like to live with this life changing complicated tremor disorder. And yes, I have "gripping of toes" too and I have never met any OT person that doesn't have the same. In fact every couple of months my podiatrist must shave off calluses on one of my toes from gripping so hard. ......... we will look forward to your updating postings with us,
Thank you, Gloria