Hello!
Posted: Tue Jan 08, 2008 2:45 am
Hi. My name is Sue and I live in Western Australia. I've just joined your forum and have found all the contributions very interesting and useful.
I first noticed the symptoms in 1989 - shaky legs, difficulty in standing after a while, muscles tending to lock, clumsy movements, fear of falling,instant relief when I started to move and when sitting down -when I was in my mid 30's. Stress exacerrbated things: I do a lot of public speaking and I would start to shake during presentations. I was the official spokeman for the organisation i worked for, and doing TV stand- ups was a night mare!
I was referred to a shrink, who said I was recalling an early childhood episode of rejection by my parents and it was no wonder my fat little legs just wanted me to run away! A doctor thought it might be related to my thyroid, so we tested that, to no avail. I was also getting hot flushes, so they thought it might be early menopause, and I went on HRT. Still no help!! But at least I could explain my shakes to my audiences - told them not to worry, it was hormonal and I'd be OK.. Tried several types of HRT. Things just continued to get incrementally worse! In 2003, my doctor thought getting a dietician in, to help me lose weight, and starting pilates classes, to strengthen my core muscles, would help. Pilates DOES help and I have been going now for 4 years, and if I miss for a couple of weeks, the shaky episodes do get worse.
But the clever pilates instructors, who are physiotherapists, observed that my problem might be neurological, and suggested I go to a neurologist.
BINGO!! This wonderful woman understood exacly what I was describing, and gave it a name - Orthostatic tremor!! She sent me off for brain CT scans to confirm there was no problem in the brain causing it -prescribed Deralin - a beta blocker. She told me little was known about OT but it was in the same category of illnesses as Parkinsons and MS - but unlikely to become so serious and debilitating.
So now I know what it is, like so many of the rest of you, I just manage it.
I take the deralin on particularly shaky days - not too often. I have a fold-up seat/walking device which I take everywhere when I know I'll have to stand, and I just sit on that. I call it my cocktail party seat and everyone asks where they can get one too. I take it shopping, so I can sit and look at clothes on the rack without being nervous that I'm about to fall over, and so just grab the first item which comes to hand. Supermarkets NEVER have anywhere to sit down, and I can now peruse the shelves at my liesure and make careful choices. When accepting public speaking engagements, I tell the organisers I need to speak sitting down, and they make appropriate arrangements. Somehow this helps connect with the audience better - they have sympathy for you!
Travelling was getting very difficult - the lines for check in and passport control take for ever. For a time I made sure I had a little sturdy wheelie cabin bag I could perch on, but now I have my fold up-seat, queues produce no fear, no anxiety, and therefore also less shakiness! Also, everyone around you are interested and helpful. I take the seat/stick on aeroplanes with no probklems, it fits in the overhead rack.
Walking on rocks, or anywhere you need to place feet carefully, and balance on one foot while placing the other, is getting harder. Last year I could manage when visiting aboriginal rock art sites in remote places. this year I needed to have someone supporting me - a stick was not enough. And I think I have been on my last camping trip. I avoid markets now as it is too hard to move slowly and in a controlled way through a crowd.
I can still do my gardening, as long as I can do it sitting down. But I do have someone in to do the housecleaning once a week.
I can see from what some of the rest of you have posted that my OT is not as bad yet as some of you are experiencing, and I don't know what the rate of deterioration is likely to be -It's been getting gradually worse over the past 20 years, but probably a more rapid decline over the past four. I'm now 61.
I hope this is not too rambling and boring, and might be helpful to someone. I do wish i had known about OT 20 years ago - it would have made life so much easier!
Like some of the rest of you, I have also noticed that a few glasses of wine helps - at a wine tasting lat week I was able to prop myself up on the bar for quite a long time.
I walk for an hour every morning, and when I miss this, I notice the shakes get worse. Swimming also helps.
So, that;s my story. Hope it might be helpful to somebody. Al th best for 2008.
I first noticed the symptoms in 1989 - shaky legs, difficulty in standing after a while, muscles tending to lock, clumsy movements, fear of falling,instant relief when I started to move and when sitting down -when I was in my mid 30's. Stress exacerrbated things: I do a lot of public speaking and I would start to shake during presentations. I was the official spokeman for the organisation i worked for, and doing TV stand- ups was a night mare!
I was referred to a shrink, who said I was recalling an early childhood episode of rejection by my parents and it was no wonder my fat little legs just wanted me to run away! A doctor thought it might be related to my thyroid, so we tested that, to no avail. I was also getting hot flushes, so they thought it might be early menopause, and I went on HRT. Still no help!! But at least I could explain my shakes to my audiences - told them not to worry, it was hormonal and I'd be OK.. Tried several types of HRT. Things just continued to get incrementally worse! In 2003, my doctor thought getting a dietician in, to help me lose weight, and starting pilates classes, to strengthen my core muscles, would help. Pilates DOES help and I have been going now for 4 years, and if I miss for a couple of weeks, the shaky episodes do get worse.
But the clever pilates instructors, who are physiotherapists, observed that my problem might be neurological, and suggested I go to a neurologist.
BINGO!! This wonderful woman understood exacly what I was describing, and gave it a name - Orthostatic tremor!! She sent me off for brain CT scans to confirm there was no problem in the brain causing it -prescribed Deralin - a beta blocker. She told me little was known about OT but it was in the same category of illnesses as Parkinsons and MS - but unlikely to become so serious and debilitating.
So now I know what it is, like so many of the rest of you, I just manage it.
I take the deralin on particularly shaky days - not too often. I have a fold-up seat/walking device which I take everywhere when I know I'll have to stand, and I just sit on that. I call it my cocktail party seat and everyone asks where they can get one too. I take it shopping, so I can sit and look at clothes on the rack without being nervous that I'm about to fall over, and so just grab the first item which comes to hand. Supermarkets NEVER have anywhere to sit down, and I can now peruse the shelves at my liesure and make careful choices. When accepting public speaking engagements, I tell the organisers I need to speak sitting down, and they make appropriate arrangements. Somehow this helps connect with the audience better - they have sympathy for you!
Travelling was getting very difficult - the lines for check in and passport control take for ever. For a time I made sure I had a little sturdy wheelie cabin bag I could perch on, but now I have my fold up-seat, queues produce no fear, no anxiety, and therefore also less shakiness! Also, everyone around you are interested and helpful. I take the seat/stick on aeroplanes with no probklems, it fits in the overhead rack.
Walking on rocks, or anywhere you need to place feet carefully, and balance on one foot while placing the other, is getting harder. Last year I could manage when visiting aboriginal rock art sites in remote places. this year I needed to have someone supporting me - a stick was not enough. And I think I have been on my last camping trip. I avoid markets now as it is too hard to move slowly and in a controlled way through a crowd.
I can still do my gardening, as long as I can do it sitting down. But I do have someone in to do the housecleaning once a week.
I can see from what some of the rest of you have posted that my OT is not as bad yet as some of you are experiencing, and I don't know what the rate of deterioration is likely to be -It's been getting gradually worse over the past 20 years, but probably a more rapid decline over the past four. I'm now 61.
I hope this is not too rambling and boring, and might be helpful to someone. I do wish i had known about OT 20 years ago - it would have made life so much easier!
Like some of the rest of you, I have also noticed that a few glasses of wine helps - at a wine tasting lat week I was able to prop myself up on the bar for quite a long time.
I walk for an hour every morning, and when I miss this, I notice the shakes get worse. Swimming also helps.
So, that;s my story. Hope it might be helpful to somebody. Al th best for 2008.