Morning Jane:
Welcome to the website, since you are newly diagnosed I know how that feels however the more you read the website Forum with the experiences people have with this disease and how they cope will help you have better understanding of OT. Here you can ask questions as well as exchange ideas that are working for you. Good to hear you have a positive attitude because fighting OT is the only way to go. I have been on Gabapentin for 12 years, it only takes the edge off of the symptoms however I do know when I miss a dose and that is when I feel "edgy." As I have said many times there is no med on the market that makes our symptoms go away completely. Try to stay active both mentally and physiscally. Walking is one of the best exercises we have, but not a slow stop go "shopping walk". You have many OT friends here so you are not alone. I live in New Jersey and sometimes have" little" get- togethers for OT people maybe you might like to join us since you live in PA. Gloria
New to the forum? post a quick introduction
Moderator: gloria
Re: New to the forum? post a quick introduction
Welcome Jane,
You have just been given advice by the BEST ~ Gloria! She and her wonderful son, Jeff started this website and it has been a Godsend to everyone who has found it.
We are here to listen to you, try to help in any way we can and hope you will check the forum often.
We all understand how difficult it is when you first receive a diagnosis, but it is so much better to know what you have than be told there is nothing wrong with you and "it's all in your head" Yes, it is, but not in that way.
I do hope you will be able to find someone near you with OT or perhaps visit Gloria and other OT friends in New Jersey. It makes such a difference to be able to sit and talk with someone else just like you!
Continue to stay positive and as active as you can, and be thankful you have such a wonderful understanding spouse. I think most of us do have that very necessary support.
Good luck and keep smiling,
Betty
You have just been given advice by the BEST ~ Gloria! She and her wonderful son, Jeff started this website and it has been a Godsend to everyone who has found it.
We are here to listen to you, try to help in any way we can and hope you will check the forum often.
We all understand how difficult it is when you first receive a diagnosis, but it is so much better to know what you have than be told there is nothing wrong with you and "it's all in your head" Yes, it is, but not in that way.
I do hope you will be able to find someone near you with OT or perhaps visit Gloria and other OT friends in New Jersey. It makes such a difference to be able to sit and talk with someone else just like you!
Continue to stay positive and as active as you can, and be thankful you have such a wonderful understanding spouse. I think most of us do have that very necessary support.
Good luck and keep smiling,
Betty
Re: New to the forum? post a quick introduction
Gloria and Betty, thank you so much for reaching out to me ...... I honestly thought I was going nuts ....... What has surprised me is the infrequency of my OT attacks. I can be fine for days, just numbness and tingling in my legs and then all of a sudden I cannot stand up without scaring everyone around me .... Feel so embarrassed at those times. I will use a stick when really bad but simply cannot bring myself to use a frame or a " hover around" (lol). I still force myself to work, as a part time receptionist, but do struggle at the end of a working day. My husband travels with his job and those times are the hardest. Fortunately my daughter has just secured a place in a local college and will be moving from the UK ... Bless her ....she is my darling girl. I would absolutely enjoy the opportunity to chat or to meet or to get together sometime (I am in York PA and so NJ is not too far at all). It is so good to know your out there and I am not alone (hooray !). Many thanks.
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owen-lynettepickles
- Posts: 54
- Joined: Sat Jun 06, 2009 4:26 am
- Location: Blenheim, New Zealand
Re: New to the forum? post a quick introduction
Hello Jane
Welcome to the world of OT!! In the beginning I too only had occasional bouts of "the wobbles" when I first noticed something wasn't right with my legs. Could go several weeks without incident then out of the blue someone would get in my way at the office and the 'dancing' would begin as I reached for something to hold onto or lean against and the other person would get such a fright they would be trying to grab me. I continued working after being diagnosed in June 2009, but twelve months ago I made the decision to "retire". I was getting very tired by the end of the day, having expended all my energies trying to carry on as normal in the office. This year I have gone to the office a couple of days per week, but only to do about 4 hours and I try to sit as much as possible.
Its important that you have a very understanding spouse to help you through this and it was good to read that it was he who found this great site - set up by Gloria and her son Jeff. It has been a godsend to me as I live on a remote Island 800km off the coast of New Zealand so don't have the experts close at hand. It was wonderful to finally have another "Kiwi" join the site earlier this year - Di from Wellington - and we have been able to meet up with each other a couple of times when I have been visiting the Mainland.
I have learnt to cope with the unsteadiness much better this year - possibly because I'm not so tired from having "retired" but am experiencing a lot of pain in my legs. I think in learning to balance myself I have put too much strain on the muscles, hence the pain. As the Island I live on can get very cold and damp, my husband and I have made the decision for me to move to the Mainland to one of the sunniest spots in New Zealand, Blenheim, where hopefully with the extra warmth and drier climate, I can cope with the pain much better. We will get to see each other at least monthly when he is on the Mainland for business, and I will make the odd trip back to the Island, when he is not planning any trips.
As I've learnt to keep my balance better I've found I don't need to use my stick very much these days, even when coping with large crowds such as we experienced when we were in the USA for three weeks in June. Once my legs had lost the stiffness from a 12 hour plane journey, I never used the stick again and found I was able to get around fine. Having my husband beside me did help as I could grab his arm on the odd occasion when it was needed. I have decided against taking any medication so far (my Neurologist prescribed clonazepam) as I didn't want to suffer the side effects, especially drowsiness.
Take care and stay positive. You will love having your daughter close by.
Kind regards, Lynette
Welcome to the world of OT!! In the beginning I too only had occasional bouts of "the wobbles" when I first noticed something wasn't right with my legs. Could go several weeks without incident then out of the blue someone would get in my way at the office and the 'dancing' would begin as I reached for something to hold onto or lean against and the other person would get such a fright they would be trying to grab me. I continued working after being diagnosed in June 2009, but twelve months ago I made the decision to "retire". I was getting very tired by the end of the day, having expended all my energies trying to carry on as normal in the office. This year I have gone to the office a couple of days per week, but only to do about 4 hours and I try to sit as much as possible.
Its important that you have a very understanding spouse to help you through this and it was good to read that it was he who found this great site - set up by Gloria and her son Jeff. It has been a godsend to me as I live on a remote Island 800km off the coast of New Zealand so don't have the experts close at hand. It was wonderful to finally have another "Kiwi" join the site earlier this year - Di from Wellington - and we have been able to meet up with each other a couple of times when I have been visiting the Mainland.
I have learnt to cope with the unsteadiness much better this year - possibly because I'm not so tired from having "retired" but am experiencing a lot of pain in my legs. I think in learning to balance myself I have put too much strain on the muscles, hence the pain. As the Island I live on can get very cold and damp, my husband and I have made the decision for me to move to the Mainland to one of the sunniest spots in New Zealand, Blenheim, where hopefully with the extra warmth and drier climate, I can cope with the pain much better. We will get to see each other at least monthly when he is on the Mainland for business, and I will make the odd trip back to the Island, when he is not planning any trips.
As I've learnt to keep my balance better I've found I don't need to use my stick very much these days, even when coping with large crowds such as we experienced when we were in the USA for three weeks in June. Once my legs had lost the stiffness from a 12 hour plane journey, I never used the stick again and found I was able to get around fine. Having my husband beside me did help as I could grab his arm on the odd occasion when it was needed. I have decided against taking any medication so far (my Neurologist prescribed clonazepam) as I didn't want to suffer the side effects, especially drowsiness.
Take care and stay positive. You will love having your daughter close by.
Kind regards, Lynette
Re: New to the forum? post a quick introduction
Hi Jane!
Just a quick suggestion if you are working as a receptionist and it is a standing desk - pls try and get a high chair that you can sit on (all the time or from time to time). The sooner the better!
Our tremors give our legmuscles such a "work-out" that the muscles become very tired very quickly. So if you can sit and work you'll feel a lot better I think and hope and perhaps reduce the extreme fatigue.
And yes, it takes a lot of energy in the beginning of "our OT journey", trying to adapt and figure out how to live positively with OT. But we can, and we do. I for example am still golfing despite being sooo sure I would have to give it up at once. So there are ways and means and tools. We have to figure out what is best for each of us as we are different, but there are ways forward.
I too have a stick/cane that I use sometimes. It doesn't really help with my tremors but it is a great signal to others that "something is not 100% OK here. And then I can behave crazily!
If you want to read how I coped, from the start to now, I have a sort of "diary"-thread on this forum..
Hang on and lean on us,
we are all here for you!
Best regards
the golfnut in Sweden.
Just a quick suggestion if you are working as a receptionist and it is a standing desk - pls try and get a high chair that you can sit on (all the time or from time to time). The sooner the better!
Our tremors give our legmuscles such a "work-out" that the muscles become very tired very quickly. So if you can sit and work you'll feel a lot better I think and hope and perhaps reduce the extreme fatigue.
And yes, it takes a lot of energy in the beginning of "our OT journey", trying to adapt and figure out how to live positively with OT. But we can, and we do. I for example am still golfing despite being sooo sure I would have to give it up at once. So there are ways and means and tools. We have to figure out what is best for each of us as we are different, but there are ways forward.
I too have a stick/cane that I use sometimes. It doesn't really help with my tremors but it is a great signal to others that "something is not 100% OK here. And then I can behave crazily!
If you want to read how I coped, from the start to now, I have a sort of "diary"-thread on this forum..
Hang on and lean on us,
we are all here for you!
Best regards
the golfnut in Sweden.
Re: New to the forum? post a quick introduction
I am new to thie forum. I am 76 yrd olf. I have had orthostatic tremors since 2000 but was told I had essential tremors. This year I discovered I have OT. I am only free of tremors while sitting or in bed. I find a walker with 4 wheels and a seat really help me. I am able to shop with this walker. In the kitchen I have a stool that I move from place to place. I use a stool with a back in the shower and the shower has a hose with a spray on the end which really helps. I have not found any medicine that helps although I have tried several. I have found that my tremors have gotten worse with time, especially this year. I am thankful for my husband who is very understanding and helpful. When we fly I always ask for a wheelchair and we take my walker with me. I am thankful for the comfort I find from my faith in my Savior, Jesus and the courage I get from daily reading the Bible God help each of you as you deal with this condition.
Janis
Janis
Re: New to the forum? post a quick introduction
Janis:
Welcome to the Forum and introducing yourself to our group. You are using many of the things that your OT friends use to help us to get through the day. I thank-you for posting and I hope you will post anytime you wish as you have a new group of understanding friends. I do have a request, would you please go back to your profile where you registered and leave your location, State and Country is enough. This is very important, it helps the medical world to know the demographic of our disease and if you or someone else would like to start a support group locally. There is nothing greater than being together with fellow OT people. That was a great part of our meeting in Omaha, everyone enjoyed chatting with other OT people and everyone was so happy in that kind of surroundings.
As always, Gloria
Welcome to the Forum and introducing yourself to our group. You are using many of the things that your OT friends use to help us to get through the day. I thank-you for posting and I hope you will post anytime you wish as you have a new group of understanding friends. I do have a request, would you please go back to your profile where you registered and leave your location, State and Country is enough. This is very important, it helps the medical world to know the demographic of our disease and if you or someone else would like to start a support group locally. There is nothing greater than being together with fellow OT people. That was a great part of our meeting in Omaha, everyone enjoyed chatting with other OT people and everyone was so happy in that kind of surroundings.
As always, Gloria
Re: New to the forum? post a quick introduction
Hello Everyone!
It is nice to meet you, and to have a place to come where people understand what you are talking about!
I am new to the forum, and I really need your assistance. I have struck out with all of the doctors that I have been seeing. My neuorologist has never heard of OT, and has no suggestions for other doctors. My family doctor and rheumatologist are scratching their heads as well. I've seen other doctors over the past 10 years and have had test upon test. Nothing is ever found.
At this juncture, I am desperate to find a doctor in Ohio, (preferably central Ohio, but any area will do,) who is familiar with this disease and has some ideas for treatment. I had been stable for a couple of years, but recently I have taken a rather drastic down turn.
Thanks so much.
RaMarie
It is nice to meet you, and to have a place to come where people understand what you are talking about!
I am new to the forum, and I really need your assistance. I have struck out with all of the doctors that I have been seeing. My neuorologist has never heard of OT, and has no suggestions for other doctors. My family doctor and rheumatologist are scratching their heads as well. I've seen other doctors over the past 10 years and have had test upon test. Nothing is ever found.
At this juncture, I am desperate to find a doctor in Ohio, (preferably central Ohio, but any area will do,) who is familiar with this disease and has some ideas for treatment. I had been stable for a couple of years, but recently I have taken a rather drastic down turn.
Thanks so much.
RaMarie
Re: New to the forum? post a quick introduction
Thank you ladies for your kind support ......I know now that I am not alone, which has been very hard. I still have not told my work colleges yet ..... they know that some think is wrong ( especially when I am doing my funny walk and hanging onto everything) . I was diagnosed in July of this year and i'm still finding it very hard to come to terms with, like everyone I was a problem to the the doctors, it was only when I had a very bad attack and was taken into hospital that I was disnosed .... where I was very lucky that the neurologist had seen a patient with this before.
But I still feel that the doctors still think it is in my head!!!!!!
Like everyone I am very tired by the end of the day, I only work afternoons but I get so tired all I want to do is go to bed when I get home, which is very hard..but I keep going just has all you ladies do.
Thank you all .
Jane
York PA
But I still feel that the doctors still think it is in my head!!!!!!
Like everyone I am very tired by the end of the day, I only work afternoons but I get so tired all I want to do is go to bed when I get home, which is very hard..but I keep going just has all you ladies do.
Thank you all .
Jane
York PA
Re: New to the forum? post a quick introduction
RaMarie:
You asked about finding a neurologist in Ohio ,perhaps the Cleveland Clinic might be a good choice for you to ask about a neurologist familiar with Orthostatic Tremors. I have heard from a number of people who have gone there . Gloria
You asked about finding a neurologist in Ohio ,perhaps the Cleveland Clinic might be a good choice for you to ask about a neurologist familiar with Orthostatic Tremors. I have heard from a number of people who have gone there . Gloria
Re: New to the forum? post a quick introduction
At this point there are 747 registered members on the forum, roughly 220 people have listed their approximate location by State, or Country, Region, or County.
We have applied these locations to the map below. Due to the size of the map and detail, some areas contain multiple overlapping locations such as the UK. As a result this map doesn't represent the number of people in any particular area. And if someone placed the US or the UK as a location, the map would place the center latitude and longitude of that area. It's not an exact science and many people without their location listed are not represented, so consider this a loose and incomplete visual reference of the geographic OT community.
We have applied these locations to the map below. Due to the size of the map and detail, some areas contain multiple overlapping locations such as the UK. As a result this map doesn't represent the number of people in any particular area. And if someone placed the US or the UK as a location, the map would place the center latitude and longitude of that area. It's not an exact science and many people without their location listed are not represented, so consider this a loose and incomplete visual reference of the geographic OT community.
Re: New to the forum? post a quick introduction
Hey Jeff,
What a wonderful idea to put this map on the site. I found it interesting, for the most part, it appears the majority of people are in the southern part of the United States ~ or the southeastern part. Of course, there are many up the eastern coast as well, and some on the west coast of the U.S. as well as in the heartland.
I wonder about the number of people on the eastern coast......and wonder why????
Betty
What a wonderful idea to put this map on the site. I found it interesting, for the most part, it appears the majority of people are in the southern part of the United States ~ or the southeastern part. Of course, there are many up the eastern coast as well, and some on the west coast of the U.S. as well as in the heartland.
I wonder about the number of people on the eastern coast......and wonder why????
Betty
Last edited by Betty on Thu Nov 29, 2012 1:33 pm, edited 1 time in total.
Re: New to the forum? post a quick introduction
Hi Jeff...agree the map is great ....just to say looking at it , good old little New Zealand really is the last bus stop .:...
I also believe there will be many more red spots as Dr`s get educated about OT ! ....hope so , as I so well remember the relief of getting a diagnose and name to `my` problem .....then finding Gloria reassure me .....there must be thousands out there in the dark trying to cope
Hey ! ...anyone traveling down to our neck of the woods ,would love the opportunity to meet with you ......Didi NZ
I also believe there will be many more red spots as Dr`s get educated about OT ! ....hope so , as I so well remember the relief of getting a diagnose and name to `my` problem .....then finding Gloria reassure me .....there must be thousands out there in the dark trying to cope
Hey ! ...anyone traveling down to our neck of the woods ,would love the opportunity to meet with you ......Didi NZ
Re: New to the forum? post a quick introduction
>good old little New Zealand really is the last bus stop .:...
Oouch! apparently I cropped the map and New Zealand fell off the planet, I've resized it and hopefully have reclaimed world peace
Oouch! apparently I cropped the map and New Zealand fell off the planet, I've resized it and hopefully have reclaimed world peace
Re: New to the forum
Hi all,
I am Chris from Yorkshire, England.
I was diagnosed about 5 years ago probably had it for around 15 years, I have been on Gabapentin for some years but I have had to progressively increase the dosage over time. I was put on Clonazepam on 11/10/12 and within 3 days I was sent home from work as I had almost lost the ability to function. I was unable to go to work as out of all the side effects I must have had at least 10 of them. Until recently I had still been able to ride my motorbikes with my friends having to push them out of the garage and put them on the stand for me. Once sat on the bike I am ok as I am sitting down! Unfortunately my big modern bike fell on me in the garage some months ago trapping my leg under it and it took 3 people to lift it off me. My knee and ankle are damaged and I am too nervous of it to try again. Had to give up flying aeroplanes and it looks like bikes will have to go too. I have 2 small 50+ years old bikes so I hope I can manage a 90cc bike next summer….I hope! I have heard Pregabalin has had some success, has anybody any experience? I am on Gabapentin at the moment.
I am Chris from Yorkshire, England.
I was diagnosed about 5 years ago probably had it for around 15 years, I have been on Gabapentin for some years but I have had to progressively increase the dosage over time. I was put on Clonazepam on 11/10/12 and within 3 days I was sent home from work as I had almost lost the ability to function. I was unable to go to work as out of all the side effects I must have had at least 10 of them. Until recently I had still been able to ride my motorbikes with my friends having to push them out of the garage and put them on the stand for me. Once sat on the bike I am ok as I am sitting down! Unfortunately my big modern bike fell on me in the garage some months ago trapping my leg under it and it took 3 people to lift it off me. My knee and ankle are damaged and I am too nervous of it to try again. Had to give up flying aeroplanes and it looks like bikes will have to go too. I have 2 small 50+ years old bikes so I hope I can manage a 90cc bike next summer….I hope! I have heard Pregabalin has had some success, has anybody any experience? I am on Gabapentin at the moment.