The Orthostatic Tremor Forum (archive)

I just checked in to see if anything new about OT. My neurologist said that the tremor is progressive. I could have told that without going 550Kms to find out. No treatment just the benzos. Family think its trivial ailment (just plant your feet firmly and stand strong!). cant continue to work in either career i have studied for. Cant change a light globe as shake on the ladder. Use a torch to see in that room at night until i pay a handyman to do it for me. Too down to study again at my age but need employment. I am so tired of comments from public "you dont need that walker, look how quick you walk". "Gee I wish i had a seat like you I get tired too" and when i carry my seat /stick "that looks heavy to carry above the ground why bother with it". Yes ignorance but I am too tired to stop to educate them about why i need the aids. Plus i just hate it when people talk over you as if you are intellectually impaired.(not that thereis anything wrong with that) - anyone seen re-runs of Seinfeld lately. One man actually reached over my head to be served first in a shop and the assistant looked straight through me. Yes I did say excuse me I have been sitting here waiting my turn. What with the SLE and the OT I am tired.

I just checked in to see if anything new about OT. My neurologist said that the tremor is progressive. I could have told that without going 550Kms to find out. No treatment just the benzos. Family think its trivial ailment (just plant your feet firmly and stand strong!). cant continue to work in either career i have studied for. Cant change a light globe as shake on the ladder. Use a torch to see in that room at night until i pay a handyman to do it for me. Too down to study again at my age but need employment. I am so tired of comments from public "you dont need that walker, look how quick you walk". "Gee I wish i had a seat like you I get tired too" and when i carry my seat /stick "that looks heavy to carry above the ground why bother with it". Yes ignorance but I am too tired to stop to educate them about why i need the aids. Plus i just hate it when people talk over you as if you are intellectually impaired.(not that thereis anything wrong with that) - anyone seen re-runs of Seinfeld lately. One man actually reached over my head to be served first in a shop and the assistant looked straight through me. Yes I did say excuse me I have been sitting here waiting my turn. What with the SLE and the OT I am tired.

Hello Jacky:
I am porotin i nknow how fustrating is to change a globe i done it and took me a long time my light is twisted now,keep using your aids there important for you!! people never going to understand what happens to as becouse like you said is ignorance not enough awerness about our illness here. keep in touch porotin

Dear Porotin
How are your feeling? Well it was a hot christmas break and what a terrible thing to happen on the 26th Dec. in all those countries especially our neighbour Indonesia. I cant imagine it the devastation and the loss of life is horrific! I stopped watching the tv it was so sad to see the death and destruction. Makes one realize how lucky we are and how much help those poor people need.Why do such dreadful things happen to people who have such a hard life anyway?
I hope you are coping with your part time work and feeling ok. Is the ET very bad? I hope you had a peaceful, happy time over the holidays. It is cooler here where I live but was still 29C. on the 25th Dec.
Best wishes
PS I have a new neurologist at Concord Repat Hosp. He has a clinic for specializing in Movement Disorders.

Dear Porotin
How are your feeling? Well it was a hot christmas break and what a terrible thing to happen on the 26th Dec. in all those countries especially our neighbour Indonesia. I cant imagine it the devastation and the loss of life is horrific! I stopped watching the tv it was so sad to see the death and destruction. Makes one realize how lucky we are and how much help those poor people need.Why do such dreadful things happen to people who have such a hard life anyway?
I hope you are coping with your part time work and feeling ok. Is the ET very bad? I hope you had a peaceful, happy time over the holidays. It is cooler here where I live but was still 29C. on the 25th Dec.
Best wishes
PS I have a new neurologist at Concord Repat Hosp. He has a clinic for specializing in Movement Disorders.

I am so happy you wrote to me!! i had a nice Christmas and try to cope with the tragedy of Indonesia I keep working I hope you have a better treatment in Concord!!! My tablet is working in my legs 50 % but i get very tired and he also give me some Sinemet for the legs when they move to much,my ET has increase in my upperbody I take Mysoline but is 1/2 tablet so is not much i do not think it help me at all??
Hang on there, keep on trying God Bless you Porotin( Keep writing please!!!)

Hi there
I can sure relate to that walker comment.
I have had many people say to me.
'What a smart idea wish i had one of these"
Patience patience is what we need lots of