Primary Orthostatic Tremor Primary Orthostatic tremor is a very rare progressive brain disorder often misdiagnosed as Parkinson’s. The tremor is usually five times the frequency of Parkinson’s and it is very difficult to observe, the tremor needs to be confirmed electrically via an EMG test to confirm its severity. The tremor makes it almost impossible for the patient to stand even for a few seconds.
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You may have seen this article before; a description of Orthostatic Tremor from the Mayo Clinic in Rochester, Minnesota. Have a read of the article and then ask yourself, “is everything correct with this article”, or are they missing the full picture?
http://www.mayoclinic.org/medical-edge-newspaper-2010/feb-26a.html
It starts off well, describes how difficult it is to diagnose, that it has a severe effect on tasks like standing in line, standing in the kitchen to prepare food and standing at a workbench to do a hobby; making these task difficult or impossible. It mentions 15% of sufferers are unsteady and experience falls, and how the tremor is so fast it is difficult to see.
For me, two of the last three paragraphs are somewhat limited in the knowledge of the condition. Yes Clonazepam has helped some people but it never did a jot for me and many others have said the same. Would you say that Clonazepam can eliminate or markedly improve the condition? I find that statement misleading and unhelpful.
Would you say that Clonazepam has completely cured you of OT, I would like to hear if it has?
“Not Progressive”, I would not agree with that either. The condition might not get extremely progressive, but little side problems like, back and leg pain, gait problems and unsteadiness will slowly make things worse in the long term.
What do you think, is the true picture of Orthostatic Tremor out there?
 When I was diagnosed with “Orthostatic Tremor” I quickly realised that my symptoms and my general quality of life with this condition were at odds with the early reports on the condition. According to some medical professionals, all I needed was a stick with a seat on it and life would go along just fine. So if that was what I had to cope with, why did I have gait problems, finding stairs difficult and in so much pain. The first medical paper that I found that portrayed OT as a severe impact on sufferers quality of life was “Quality of Life in Patients with Orthostatic Tremor” by a group from London.
This was a well written report; very simple and clearly stated that orthostatic tremor patient could have a very rough time of it. This report showed that socially this condition can have a terrible impact, that depression should be looked for by doctors, and that physical pain also played a big part in day to day life with OT. One additional point to note from their report was this statement:
“This suggests that OT patients not only have difficulties performing their normal daily activities but also are impaired in their social activities, perhaps reflecting a tendency to avoid situations where they may have to stand still. The survey scores were even lower than those found in patients with multiple sclerosis or Parkinson’s disease”.
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 I realised some years ago that orthostatic tremor was not quite what some people claimed was written on the can. Many people said, “Yes, standing still is a problem, but I can walk away and be absolutely fine”. There were also those that said, “I can’t stand still, my gait is terrible, I am unsteady, and exercising wipes me out for days”. For me tremor affects us in different ways due to the severity, and it is completely wrong to try to tell someone that already has a diagnosis to go back to their neurologist and get further diagnosis of some so far undiagnosed condition. Orthostatic tremor can be easily confirmed via an EMG test, and the two examples mentioned above are by no means the full list of symptoms and many people have described throat tremor, head tremor and postural arm tremor. I believe that yes, OT can be just trouble standing still, but on the other hand you can have a combination of all the other effects that many other sufferers have described.
Exercise and weight control can be severely affected by whether the adrenalin induced tremor has a severe affect on your quality of life. Many people with OT say that to help their condition they take regular exercise, long walks, Pilates, exercise machines, etc. Then there is the other side of the coin, poor gait and pain that makes exercise into two days of misery, or adrenalin that induces so much shaking that you cannot do anything for the rest of the day.
If exercise is a problem for you, then you are going to be spending a lot of the day not mobile and like me there is going to be a battle to maintain a correct weight. If exercise is a problem then diet is the only answer but this means losing weight is going to be a very slow going.
Which category would you say you are in? Does exercise wipe you out, is it now impossible? Is OT affecting your ability to control your weight? Are you one of those that exercise is not a problem?
 One OT category I have not looked at yet is walking in the dark or dark spaces. Nearly every orthostatic tremor sufferer I have heard from have had a really hard time with walking in the dark, to the point that it is to be avoided. Five years ago I use to walk home through a wide open park and in the winter it was dark to the point where it was hard just to see your feet. As time went by this journey got more and more of a struggle as my gait deteriorated, planting a foot into the darkness was like stepping into the unknown with a blindfold on. Eventually I avoided the park, taking another route, before avoiding the journey all together as my gait got worse.
When you have tremor in your balance or vestibule system, gait is affected, balance is severely affected and you end up relying more on your sight to correct for balance problems. The act of walking in the dark becomes an addition attention task on top of the actual task of walking.
When adults with neurodegenerative disease or those with an increased risk of falls walk while simultaneously performing an attention demanding task, two things happen: 1) they slow down, like healthy people, and 2) stride variability increases.
For people with OT slowing down is a really bad idea, it increases the shaking and just makes matters worse. The effort of walking in the dark increases anxiety and increases the sensation that you could fall at any time.
For me dark spaces are to be avoided. I gave up astronomy because I risked a fall and it just got too dangerous. I cannot stand still with my eyes closed, not unless someone is there to catch me, and looking up or behind whilst standing in the dark will have me falling over for sure. I will walk to my car in the dark with a stick whilst holding on to a wall, but I need a helper if it is really dark. I never carry anything in the dark, I would get some else to carry it for me. For me walking in the dark is like swimming with one hand tied behind your back, not advisable and too much like hard work.
 A study by a group from the National Hospital for Neurology and Neurosurgery in London studied 20 orthostatic tremor sufferers and found that eight had to retire from work due to their condition; ten retired for other reasons and just two sufferers were still working. Whether you can still function at work depends on what type of work you do, how you get there, how affected you are, and more importantly how accommodating your employer is.
The most obvious obstacle is the job that involves a lot of standing, it really depends if you can keep walking, or you are able to lean against a desk or counter as to whether you can cope or not with your OT. It may be possible to ask for a stool, but where you are meeting the public it may not be possible to meet your needs. Some employers can be sympathetic to your problems and try to relocate you to other work, but it may not be possible to accommodate everyone. Jobs requiring sureness of foot are another problem for orthostatic tremor sufferers. Many jobs such as electrician or plumber where walking in lofts and across spaces with no floor boards are just out of the question if you are to avoid a major accident.
Holding down a job with OT is one thing, actually getting there is another. There is no way many people with OT can use public transport, many trains require standing and you just cannot reserve a seat every day on local trains. Buses mean standing on bus stops, and access can limited for wheelchair user. As for mobility scooter many UK transport services will not take them, you can take an electric wheelchair but you may find that you are not that disabled to use one all the time. Yes you could take a stick seat to use on public transport, but the pushing a shoving may rule that out. If you can use your own vehicle to get to work that is one thing, but the stress of the journey can have a profound effect on tremor resulting in a significant deterioration of the health of OT sufferers, leading to depression in many cases.
Getting ready for work in the morning is a major problem, tasks that would take a normal person five minutes can result in a strenuous struggle, taking five to ten times as long, resulting in fatigue and pain. Jobs that require smart appearances often mean wearing shoes that are not suitable for OT; stiff leather shoes may look nice but they can cause severe balance issues.
Making the decision that you just cannot continue because it is seriously affecting your health may be a big financial decision, but it may be beyond your control due to your physical limitations. Many employers may help with finding you work else work in the company, or working from home may be a possibility, but long term home working can lead to isolation and depression.
Finally there is perception; OT cannot easily be seen until you are really in trouble. Many people you work with have seen you before your OT came on, they may see you walking one minute and then a trembling mess the next. You may have resulted to using a stick seat or cane and people will want to know why, as the condition may not be that obvious to them.
I retired on ill health 14 months ago because it was severely affecting my health, it would be nice to hear if you have had to give up work due to this horrid condition?
 Hi everyone, I wonder how many people suffer from instep pain?
I have found that there are many tasks that are just impossible to do sat down and require your hands free, meaning leaning is not an option. Such examples include locking and unlocking the front door, operating keypads, lifting objects and filling up the car with gas. The foot consists of 24 bones which consist of two arches, the longitudinal arch and the transverse arch. The muscles of the foot, along with a tough, sinewy tissue known as the plantar fascia, provide secondary support to the foot. It is the plantar fascia that can become inflamed or damaged to produce instep pain. For me I try to stand to do these tasks, I struggle to stand, stiffen up under the stress and before long the pain in both feet is pretty bad. My doctor has suggest wiggling the foot to help; and doing a few of the foot exercises sat in the chair does help, but stand back up and repeat the tasks and the pain is right back again. If you have had this pain, it would be interested to hear if you had tried ice, compression or over the counter medications to treat the pain.
Hi everyone, we have had a lot of new members over the last few weeks, plus many more that have not posted yet. I have been asked to start this general introduction thread just to get everyone sharing their experiences with orthostatic tremor as a problem shared is a problem halved. If you have not said hello yet, here is your chance.
Here is a quick summary of my history with OT: I first noticed problems with balance about eleven years ago, funerals and queues mostly. I remember spending an unpleasant hour in Florence Italy, hopping from one leg to another wondering what the hell is going on. This came on so slowly that you don’t really know what is happening. It is a bit like boiling water, heat cold water and you tolerate it longed that putting your hand in hot water. I put up with OT for so long that it was my boss that finally said I think you should see my doctor. I was lucky with my diagnosis; I had a doctor that was sympathetic and a neurologist that had heard of it before. For many sufferers the struggle for a diagnosis is a tortured route of sceptical medical staff who cannot believe what they are seeing. I have realised long ago that “the drugs don’t work” to quote a song and all you can do if keep your chin up and cope the best you can.
Please note that if you have not posted before your comment may not appear immediately. All the best and we look forward to hearing from you
I should have got my brother to drag the large green canvas bag to the recycle point last night but as usual it slipped my mind. I really did not think that a canvas bag half filled with grass would be that heavy, but when I tried to put it on my walker to take it to the road outside it would not move. The rain on Saturday had got into the grass and although an able bodied person would have found it no problem, on a walker it soon became obvious that it would not go far. In the end by repeatedly sitting and throwing the bag I got in to the edge of the lawn, but it was not going to go any further.
I have a weather webcam and it was nice to see one of my neighbour take the garden waste bag the rest of the way. I have found that people that know you less well are more sympathetic and more willing to help out when things get difficult. Getting close relatives that have seen you in better days to understand that some things are difficult is a fact that many of us with OT have had to cope with. Invisible disability are tough to cope with and difficult to get friends to come to terms with. The famous statement, “but you look so well” really does not help and I cannot tell whether anyone that uses it are trying to make you feel better or really don’t get it. Certainly for me, neighbours will help where as freinds and close relatiions just don’t get it. All the Best, Dave
 I have a regular cleaner that calls for two hours once a week to do all the jobs that I find impossible these days. Washing the laminated floors on a chair would take me many hours, washing the clothes is a struggle and changing the sheets and vacuuming would leave me shaking all over. So nothing prepared me for what happened yesterday.
I got home at 7pm and went into the front room to put on the lights and pull the blinds, check the computer and turn on the TV. It must have been fifteen minutes before I ventured out into the kitchen to puzzle at the sight. Have you every looked at a sight and sat there trying to comprehend what exactly caused this mess, you rule out the crazy thing until you home in on the obvious answer.
Two weeks ago I had been taken ill with a stomach upset and left a full plastic bottle of freshly squeezed orange juice lying horizontally on a shelf in the refrigerator. For days I could not face orange juice and finally forgot all about it and it languished there. Finally after the days past, the bottle exploded which such force that it blew the fridge door open and blew the contents clear across the kitchen, spreading orange juice everywhere.
When standing still and housework is a major problem, the clean up job was a nightmare. How many of you have faced a similar challenge to your OT symptoms.
So here i am after so long of not posting. No excuse just in denial i guess, if i don’t read about it, its not real. How is that working for me you ask? Its not.
I am lost in a world of able people and i have been trying to live up to some kind of “normal”. I have been trying to create a “normal” life for myself and it is so soul destroying.
My question is, have you ever tried to ignore the mere existence of OT? Not just for the benefit of others but so you can feel like you have some sort of life that doesn’t involve the recliner chair 24/7.
I went kayaking and it was so heart warming, something that was on my bucket list to do before… well i kick the bucket i guess. Just over a week later i am getting on my feet again. What was i thinking, seriously!!
I am 33 i am not ready to give but my body is not holding up. Medications can mask the tremor but the wearing of the body no one can stop. Do i hate myself that much that i am willing to keep pushing my body to its limits. I know the answer.
So friends, can you shed some light on why i keep doing this to myself? Do you do the same?
ooops from Nicola
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