Hello everybody:
My nickname is porotin I live in Sydney australia I have Essential tremor but they have found out i also after so many years that I have OT.
I would like to know how to comunicated with other people who suffer OT to see how I can cope best, in here there are no many people who know what is this so i feel alone I also donot write very good english becouse is not my language.
thank you for let me in your forum regards porotin
New to this forum
Moderator: gloria
welcome
Hi Poritin,
Welcome to the OT Resource Forum.
>I would like to know how to communicate with other people who suffer with OT to see how I can cope best
This forum is probably the best place to communicate with other people with OT. There are plenty of nice people here that are knowledgeable about coping with OT and I'm sure that other forum members would be glad to discuss whatever questions that you may have.
>I also do not write very good english becouse is not my language.
English is my only language and I still have difficulty with it.
I hope that you are comfortable here and please don't hesitate to ask questions. There may not always be answers but hopefully you will have some nice conversations along the way.....
regards,
admin
Welcome to the OT Resource Forum.
>I would like to know how to communicate with other people who suffer with OT to see how I can cope best
This forum is probably the best place to communicate with other people with OT. There are plenty of nice people here that are knowledgeable about coping with OT and I'm sure that other forum members would be glad to discuss whatever questions that you may have.
>I also do not write very good english becouse is not my language.
English is my only language and I still have difficulty with it.
I hope that you are comfortable here and please don't hesitate to ask questions. There may not always be answers but hopefully you will have some nice conversations along the way.....
regards,
admin
Welcome Porotin
Hello Porotin!
My name is Betty and I, too, have OT as well as ET (Essential Tremors). I understand how you feel; all of us do!
English may not be your language, but you do very well. I would be happy to answer any questions you may have, if I can.
It has taken me almost 15 years to find out what I have and it is always a matter of learning ways to cope with the problems we face. Each day we all face the same problems and try different ways to cope; trying to find the one which will work best.
I have problems standing, as most of us do, and find it easier if I hold onto something, like a chair or table or lean against something, like a wall. It seems to make me a bit more stable and my tremors almost disappear. But ~ if I stand too long, I will have difficulty walking. I think this is common to most of us; at least that is what I read from most people.
Walking seems to make it much easier and for some, their tremors seem to disappear while walking at a rather fast pace. Walking slowly does not help ~ at least for me ~ my tremors are still there and my legs get weaker. Walking in open areas seems to be more comfortable than tight places, such as a store or small shop.
I have found it easier ~ now that I know I have OT and ET ~ to tell my friends I have a neurological problem. If they question me about it, I try to explain what OT is and how it affects the body.
Have you just recently learned you have OT and ET? I think once you have adjusted to the fact of what you have ~ you will then learn new and different ways of coping ~ we all do!
If you have any questions you think I might be able to answer, please ask; I will be happy to try to answer them as they relate to me. I can only speak for myself and am no expert; I can only tell you things I have experienced. However, thanks to Gloria, we have this wonderful site and can communicate our thoughts and feelings with people all over the world.
You can either post here on the FORUM or you can contact me through my personal email, or both. If you write to me at my email address, please put OT in the subject line; then I will know it is from another OT friend.
Good luck and keep writing; I am sure you will get information from lots of others.
Betty in Florida (USA)
My name is Betty and I, too, have OT as well as ET (Essential Tremors). I understand how you feel; all of us do!
English may not be your language, but you do very well. I would be happy to answer any questions you may have, if I can.
It has taken me almost 15 years to find out what I have and it is always a matter of learning ways to cope with the problems we face. Each day we all face the same problems and try different ways to cope; trying to find the one which will work best.
I have problems standing, as most of us do, and find it easier if I hold onto something, like a chair or table or lean against something, like a wall. It seems to make me a bit more stable and my tremors almost disappear. But ~ if I stand too long, I will have difficulty walking. I think this is common to most of us; at least that is what I read from most people.
Walking seems to make it much easier and for some, their tremors seem to disappear while walking at a rather fast pace. Walking slowly does not help ~ at least for me ~ my tremors are still there and my legs get weaker. Walking in open areas seems to be more comfortable than tight places, such as a store or small shop.
I have found it easier ~ now that I know I have OT and ET ~ to tell my friends I have a neurological problem. If they question me about it, I try to explain what OT is and how it affects the body.
Have you just recently learned you have OT and ET? I think once you have adjusted to the fact of what you have ~ you will then learn new and different ways of coping ~ we all do!
If you have any questions you think I might be able to answer, please ask; I will be happy to try to answer them as they relate to me. I can only speak for myself and am no expert; I can only tell you things I have experienced. However, thanks to Gloria, we have this wonderful site and can communicate our thoughts and feelings with people all over the world.
You can either post here on the FORUM or you can contact me through my personal email, or both. If you write to me at my email address, please put OT in the subject line; then I will know it is from another OT friend.
Good luck and keep writing; I am sure you will get information from lots of others.
Betty in Florida (USA)
OT and ET
Hello Betti:
Thank you for your letter of encouruge. are people who suffer problem with sleep too???I will like to know?? I send you a private email too.
I had tremor in my legs for long time but they never told me is OT so I have been surviving along thinking was ET alone now has a company!! haha just joke all the time this is me. Is great that all of you understand me thank you. love porotin
Thank you for your letter of encouruge. are people who suffer problem with sleep too???I will like to know?? I send you a private email too.
I had tremor in my legs for long time but they never told me is OT so I have been surviving along thinking was ET alone now has a company!! haha just joke all the time this is me. Is great that all of you understand me thank you. love porotin
OT and ET
Hello Porotin,
You asked if people with OT and/or ET have problems sleeping; I can only speak for myself on this one ~ I have no problems sleeping. When I lie down in my bed, I have no tremors at all and sleep very well. Do you have problems sleeping?
Perhaps your doctor didn't know you had OT until just recently; it seems to be very difficult to find a doctor who has seen or knows about OT.
I did receive your note and I will write a personal note to you.
You seem to have a good sense of humor ~ that's good! A good attitude is also important and you seem to have both!
Betty
You asked if people with OT and/or ET have problems sleeping; I can only speak for myself on this one ~ I have no problems sleeping. When I lie down in my bed, I have no tremors at all and sleep very well. Do you have problems sleeping?
Perhaps your doctor didn't know you had OT until just recently; it seems to be very difficult to find a doctor who has seen or knows about OT.
I did receive your note and I will write a personal note to you.
You seem to have a good sense of humor ~ that's good! A good attitude is also important and you seem to have both!
Betty
-
J
trouble sleeping?
hello porontin,
I thought i would answer your question about sleeping. I have noticed i have trouble sleeping if i have been standing still a lot during that particular day. At night my legs ache and feel heavy as if i have done many exercises.
I have found that if i spend an hour in the afternoon resting (not sleeping) on the bed then i can get a good nights rest as the muscles in my legs have relaxed.
It may not be necessary for you to go to bed. It is enough to put your legs up and use that time to write letters, read or in my case prepare lessons. It is part of the way i manage this OT as before i would sit at my desk to do paper work.
I thought i would answer your question about sleeping. I have noticed i have trouble sleeping if i have been standing still a lot during that particular day. At night my legs ache and feel heavy as if i have done many exercises.
I have found that if i spend an hour in the afternoon resting (not sleeping) on the bed then i can get a good nights rest as the muscles in my legs have relaxed.
It may not be necessary for you to go to bed. It is enough to put your legs up and use that time to write letters, read or in my case prepare lessons. It is part of the way i manage this OT as before i would sit at my desk to do paper work.
Acupuncture and more
I have tried acupuncture with 3 different practitioners to no avail. One told me he was going to a conference in China where they were to discuss acupuncture of the brain and he would get back to me if he thought it could help me. He never did. I have also tried cranial sacral therapy, biofeedback and hypnosis; I have gone to psychiatrists, physiatrists, neurologists, chiropractors and a variety of other healers. As I wrote in a previous message .5 mg of klonopin and 300 mg of neurontin taken as needed have helped me to get through situations which would otherwise have been horrendous-like going to social gatherings, getting to my seat in theaters, etc. A couple of weeks ago my neurologist suggested I try taking the neurontin by itself daily. I am finding this to be slightly helpful; there are improvements like being able to stand in a line of 2 people. (3 or more would throw me!) I'm thrilled with any improvement and will perhaps increase the amount of neurontin. I have also started working with a new physical therapist who I'm finding helpful. The neurontin makes me a little steadier and I think the physical therapy teaches me to maintain and enhance that (slight!) feeling of steadiness.
You're far from alone in how you feel about OT. The biggest way it has altered my life has been socially. I still cannot stand in the street or in a store and talk with a neighbor; if I cannot see anything to lean on I avoid casual contact with neighbors, make excuses that I have an urgent engagement to rush off to. This makes me very sad as I would like to reach out rather that rush off. On the other hand, OT has also altered my life for the better as I wrote previously; because originally I thought I could not stand because of a panic problem I learned about phobias and developed a psychotherapy practice specializing in anxiety and panic. Since OT produces lots of anxiety (Am I going to collapse? Can I make it to the door?), I think my work has been at least as helpful to me as to others.
I'm very interested in learning of anything that has worked for any of you. I'm so glad to have this web group for information and support and just the amazing knowledge that there are so many others out there with the exact same problem as mine has already been very helpful to me. Harriet
You're far from alone in how you feel about OT. The biggest way it has altered my life has been socially. I still cannot stand in the street or in a store and talk with a neighbor; if I cannot see anything to lean on I avoid casual contact with neighbors, make excuses that I have an urgent engagement to rush off to. This makes me very sad as I would like to reach out rather that rush off. On the other hand, OT has also altered my life for the better as I wrote previously; because originally I thought I could not stand because of a panic problem I learned about phobias and developed a psychotherapy practice specializing in anxiety and panic. Since OT produces lots of anxiety (Am I going to collapse? Can I make it to the door?), I think my work has been at least as helpful to me as to others.
I'm very interested in learning of anything that has worked for any of you. I'm so glad to have this web group for information and support and just the amazing knowledge that there are so many others out there with the exact same problem as mine has already been very helpful to me. Harriet
-
J
Medications
Dear Harriet,
Thanks so much for telling me about how you cope with OT.
The medication you are using is not yet available here for people with OT. I have been thinking of hypnotherapy after reading the research article which came from India.
I would like to thank Gloria for this website and say how nice it is to be able to make contact with other people with OT.
Thanks so much for telling me about how you cope with OT.
The medication you are using is not yet available here for people with OT. I have been thinking of hypnotherapy after reading the research article which came from India.
I would like to thank Gloria for this website and say how nice it is to be able to make contact with other people with OT.
Jaqueline
Hello J: if i have spell you name correctly,Thank you for responding about sleep problems!! I live in Sydney where are you in this side of the world?? may be we can contact each other??
I am on trial on Epilim I went to RPA in Sydney and DR will see me in November!! i will see how i handle the medicine becouse it make me very tired specialy when i am working??and i got the feeling i have bvery heavy legs to carry around but i only stated 2 weeks ago so have to wait a bit long?? but I will like to chat more often with you!! love Gloria is my real name too.
I am on trial on Epilim I went to RPA in Sydney and DR will see me in November!! i will see how i handle the medicine becouse it make me very tired specialy when i am working??and i got the feeling i have bvery heavy legs to carry around but i only stated 2 weeks ago so have to wait a bit long?? but I will like to chat more often with you!! love Gloria is my real name too.
-
J
Medication
Hello porotin and all
I am up northwest of sydney about 600km. I also go to RPA to see the neurologist. I would be interested to see if the medication you are taking helps you with the OT so please keep in touch. I hope you are managing OK. J
I am up northwest of sydney about 600km. I also go to RPA to see the neurologist. I would be interested to see if the medication you are taking helps you with the OT so please keep in touch. I hope you are managing OK. J
Re: Medication
Hello J::J wrote:Hello porotin and all
I am up northwest of sydney about 600km. I also go to RPA to see the neurologist. I would be interested to see if the medication you are taking helps you with the OT so please keep in touch. I hope you are managing OK. J
Beautiful name!!! I live in the Northen Beaches is great we are so closed,i went to my GP becouse it make me fall sleep at work so I will started slow ,thank you for answering the message love porortin
Hello!!!!
Hello is this the right place to say hello to everybody!!!
I read the messages and they are very good, is enybody has problem with concentration or the medicine are to strong and you forget thingsI am first time in a low dose of medication so i am hanging in there!!
I just thought to say hello to all of you!! Porotin
I read the messages and they are very good, is enybody has problem with concentration or the medicine are to strong and you forget thingsI am first time in a low dose of medication so i am hanging in there!!
I just thought to say hello to all of you!! Porotin
Hello All!
I just thought I would check in to see what is going on. I found lots of new people and interesting questions and answers as well as ways others try to cope.
Porontin, you asked about problems sleeping and J you answered by saying if you have stood too much during the day, your legs feel heavy and also feel as if you have done extensive exercising. I can certainly relate to that!
When I first answered that question for you, Porontin; I didn't even think about what J discussed. I think I ignore too many things going on with me, since I have been trying to cope with this for so long ~ I thought everyone had these same problems, not realizing they were related to OT.
I DO have a problem with my legs when I have been standing for too long during the day or evenings. I will have severe cramping in my feet and legs. This often happens while I am sitting in my recliner in the evening; but also happens during the night and awakens me. There have been times when I must get up, sit on the side of the tub and soak my feet and legs in very warm/hot water in order to stop the cramping.
J, I must agree with my friend, Harriet ~ the biggest impact OT has had on my life is socially; but it has also curbed my ability to do physical things, such as play golf ~ which I loved! I am no longer able to play. I still THINK I can; and in my heart, I truly BELIEVE I can; but when I am honest with myself; in my mind ~ I know I cannot. I have tried; I was able to hit one ball, but almost lost my balance, so I haven't tried again recently. I do plan to give it another go ~ I don't plan to give up!
One of the things I find very difficult to cope with is fatigue! My energy level is very low and any amount of exertion is exhausting to me. Do any of you experience this problem? If so, how do you cope?
This should probably go under another topic ~ but I will ask here; do any of you find bathing one of the MOST difficult things you do? I have a built in seat in our shower, with a "wand" type shower head, but that doesn't do it for me. I find I MUST be seated at all times and when I try to stand to dry my body; it takes every ounce of energy I have just to do that. Since the floor of the shower or tub is wet and slippery, I become very tense because I fear I will fall. By the time I have finished; I am breathless and totally exhausted. I would love to hear any thoughts or suggestions others might have.
As I have said soooooo many times before, I cannot say enough about Gloria and this site. She has given us an opportunity to 'be in touch' with others, all over the world, who truly understand what is going on with each of us and understands. Thank you Gloria!
Betty
I just thought I would check in to see what is going on. I found lots of new people and interesting questions and answers as well as ways others try to cope.
Porontin, you asked about problems sleeping and J you answered by saying if you have stood too much during the day, your legs feel heavy and also feel as if you have done extensive exercising. I can certainly relate to that!
When I first answered that question for you, Porontin; I didn't even think about what J discussed. I think I ignore too many things going on with me, since I have been trying to cope with this for so long ~ I thought everyone had these same problems, not realizing they were related to OT.
I DO have a problem with my legs when I have been standing for too long during the day or evenings. I will have severe cramping in my feet and legs. This often happens while I am sitting in my recliner in the evening; but also happens during the night and awakens me. There have been times when I must get up, sit on the side of the tub and soak my feet and legs in very warm/hot water in order to stop the cramping.
J, I must agree with my friend, Harriet ~ the biggest impact OT has had on my life is socially; but it has also curbed my ability to do physical things, such as play golf ~ which I loved! I am no longer able to play. I still THINK I can; and in my heart, I truly BELIEVE I can; but when I am honest with myself; in my mind ~ I know I cannot. I have tried; I was able to hit one ball, but almost lost my balance, so I haven't tried again recently. I do plan to give it another go ~ I don't plan to give up!
One of the things I find very difficult to cope with is fatigue! My energy level is very low and any amount of exertion is exhausting to me. Do any of you experience this problem? If so, how do you cope?
This should probably go under another topic ~ but I will ask here; do any of you find bathing one of the MOST difficult things you do? I have a built in seat in our shower, with a "wand" type shower head, but that doesn't do it for me. I find I MUST be seated at all times and when I try to stand to dry my body; it takes every ounce of energy I have just to do that. Since the floor of the shower or tub is wet and slippery, I become very tense because I fear I will fall. By the time I have finished; I am breathless and totally exhausted. I would love to hear any thoughts or suggestions others might have.
As I have said soooooo many times before, I cannot say enough about Gloria and this site. She has given us an opportunity to 'be in touch' with others, all over the world, who truly understand what is going on with each of us and understands. Thank you Gloria!
Betty
To All OT Friends: The responses on this page are showing such a sincere spirit of helping each other deal with the problems we share with this mindbogging disease. However it also shows that we as a group are not going to let it control us! I might also say to Porotin I hope you are feeling better now knowing that we UNDERSTAND exactly what you are saying and feeling. As an extension of my communicating with Betty, Harriet, and Eleanor, I have had the pleasure of meeting them in person. They are all wonderful people and now friends that I would never have known if we didn't share OT. OT has a good side too! Gloria
Reply to all OT friend's
Hello Betty,Jacky,Frieda and Gloria:gloria wrote:To All OT Friends: The responses on this page are showing such a sincere spirit of helping each other deal with the problems we share with this mindbogging disease. However it also shows that we as a group are not going to let it control us! I might also say to Porotin I hope you are feeling better now knowing that we UNDERSTAND exactly what you are saying and feeling. As an extension of my communicating with Betty, Harriet, and Eleanor, I have had the pleasure of meeting them in person. They are all wonderful people and now friends that I would never have known if we didn't share OT. OT has a good side too! Gloria
I am on Epilim for a trial is working for me,my legs are less trmery and I can stand and do my work!! I only work part time 5 hours a day I was feeling a lot of fatigue too but when i have reduce my medicine I am better,I am taking 1/2 tablet of mysoline for my hands and rest of body tremor,I also notice becouse i work with custumer I tend to have fun with them and my afternoon becomes more pleasant!!!My arms and legs sometimes are heavy I think is side effect of medicine I keep my self the best i can on the positive side and help a lot!!!Health problem with me is notall i have to worrie about I also have a disble son to oversee too.
also my anxiety level are low at moment if we keep are stressor low is best!! Thak you Gloria for the web site is really a helpfull place to come a read!!And find other with similar situation,yes keep as helping each other is the most wonderfull thing we can offer to each other thank you to the computer!!! I will keep posting take care all of you Love Porotin