"Many publications about medical conditions are written by medical experts or by individuals relating their own personal experiences. This article is an attempt to relate the experiences of a number of people with the same condition, in this case, Orthostatic Tremor. I am thankful that I do not have this disability, but I am married to Ruth, who does. I am grateful to the members of the OT Group of the NTF for responding to an informal questionnaire, and what follows is based on those responses plus some of my own (nearly) firsthand knowledge.
The main change within the Group since all this started in 2008, is that we now have more Members, and new ones are still emerging, suggesting that OT may be a little less rare than we first thought. I hope that those reading this for the first time will find it interesting and informative. If you have another type of tremor, you may even find some parallels with your own experience."
Many people live with Tremors. A Tremor is an unintentional rhythmic muscle movement involving oscillations of one or more parts of the body. Orthostatic Tremor (OT) is one of the rarer Tremors.
The National Tremor Foundation (NTF) aims to promote knowledge and awareness of all types of tremors, to support people who have tremors, and to sponsor research into cures. Most of the 900 plus members of the NTF have Essential Tremor (ET) or they are related to people with ET. But within the membership there is now an OT group. When this project started, there were 22 persons who had OT. This is now up to 25: 23 women and 2 men. The group is augmented by husbands/partners/carers.
At a group meeting in May 2008, it was agreed to prepare a document describing what it is like to have OT, based on the experiences of those concerned. This is the result, based on responses to questionnaires. Those who did not participate have been involved in finalising this report.
This has had no input from any medically qualified person, so it is not a scientific thesis but simply an attempt to summarise what it is like for people to live with OT.
The name, Orthostatic Tremor (OT) is intended to be a literal description of what it is: a tremor which occurs when the person is standing upright. It is a rare condition characterised by rhythmic contractions that occur in the legs immediately after standing. It is that, but it is much more. It is recognised as progressive, so, in a sense, this literal description is most likely to describe the condition at the outset only.
OT is variable in at least three ways. It varies from person to person; individuals find their own experiences changing from time to time; and there are variations in the parts of the body affected. Respondents’ rating of their symptoms showed wide variations. But in addition, there are variations from day to day or within each day –sometimes with a cause (e.g. stress or exertion) but sometimes without any identifiable reason. Then some find that more than the feet/legs are affected, i.e. hands, arms, head, or trunk. In some cases this may be ET rather than OT. So what is set out here is an attempt to describe the OT experience in a general way, without covering the whole range of detailed aspects.
The clue in the crossword puzzle was “Endure” and the answer was “Stand”. For each OT person, standing, sometimes for just a few seconds, is endurance. The effect of the tremor is somehow to prevent the muscles from doing what they are supposed to do. The effect is that the person feels that their legs will buckle under them, which can result in actual falling. Or there may be a “freezing up” of the legs, requiring someone else to provide support for the OT person to get going again. Persistence, perhaps with support from a wall or something similar, is likely to result in pain and greater than normal fatigue later, perhaps for the next few days. This is the single biggest problem for those who have OT. Any activities involving standing (queuing, browsing in shops, a buffet meal, etc) are at best difficult and more likely impossible. Theoretically, the tremor and associated pain disappears when the person sits or lies down. This always brings a welcome relief, but for some there is still tremor and/or pain when at rest – sometimes linked to greater than normal exertion. The pain, e.g. in the back, may be linked to poor posture as a result of the tremor and efforts to counteract it – OT people tend to stoop as they are liable to fall backwards if they stand erect.
In the early stages of OT, walking may not be affected too much. The OT person may find that they walk quickly and may require the assistance of a walking stick (or two). But as the condition progresses, the walking distance tends to reduce. The variability factor means that the actual distance which can be walked will vary, and at worst it is virtually not at all. A clear passage is required – no people or objects in the way. But conversely, open spaces where there is no means of support are a problem. There is a feeling of stepping out into no man’s land, and a need to cross this territory as quickly as possible, ideally to reach a point where there is something to sit on. For walking up and down stairs, or even a few steps, a rail on both sides is essential.
In the survey, the average assessment of the difficulty involved in walking was between moderate and severe. Only one respondent indicated just minor difficulty, and that was supported by a comment about crowds and restricted space.
OT impairs other movements. Examples are rising from a chair, kneeling down, reaching up and the like. Rising up or otherwise getting going can be a particular problem – as though the process of communicating the brain’s requirements to the body is sluggish. This can described as the “freezing up” experience. So when, for example, the door bell rings, if there is no-one else to answer it, the caller will have gone away by the time the OT person has reached the door. In fact, those who have OT are very restricted in what they can do. It is almost a case of being an invalid, but with the added problems of the variations, the inherent feeling that “I ought to be able to do it”, and the pain/additional tremor/sleep disturbance that can result from having made the additional effort. Some remain able to drive, but others find that their control over their legs and feet is impaired so as to make driving inadvisable.
This is a very debilitating part of the condition. OT persons frequently experience extreme exhaustion or fatigue, sometimes accompanied by excessive perspiration. Basic routines such as showering/dressing can take much longer than normal and require a period of rest for recovery. Even after a day of relatively little physical activity, there can be such fatigue as to make the person feel unable to get out of a chair, or needing sleep, or a very early night. Additional exertion can produce extra tremors as well as the exhaustion. There is also weakness, exacerbated by the lack of normal physical exercise.
It is recognised that stress exacerbates tremors. This is certainly true for OT. There is a vicious circle whereby the tremor gives rise to stress because of the effects of tremor, and then the stress increases the tremor and so on. In this context, stress must be considered broadly - it includes any unusual situation or activity, and it seems almost any emotion, can be the trigger. So anger, annoyance, concern, frustration, and even excitement or anticipation can be a problem. One respondent described this as “adrenalin seems to go into overdrive exacerbating the tremor”. Particular difficulty is caused by situations such as a crowded place - nowhere to sit, exertion involved, and the fear and actual risk of falling. The result is that activities such as visits to the GP, to church, to the cinema, to the theatre or just to someone else’s home are major hurdles. Any kind of crowded place is a problem – and a crowd could be just a few people if the available space is limited.
The OT person appears rude if they barge into people or demand a clear path. One respondent stated “sometimes I am so desperate I want to push people aside violently”. There is a tendency to avoid such situations and even to become asocial. Use of public transport is difficult or impossible, so getting out and about is very difficult for those without partners or carers. It seems likely that the link with stress/anxiety is not merely psychological, but the malfunction within the brain which causes tremor is linked to the mechanisms within us that prompt response to difficulty and emotions generally – but that is outside the scope of this paper.
From what has been set out already, it will be clear that many aspects of living with OT are not simply physical. The OT person experiences a great deal of frustration and dependency on others such as spouses/partners/carers, and lack of confidence when separated from them for even a short time. Simple household tasks such as cleaning, cooking, and even making a cup of tea (or carrying it to another room) are either difficult or impossible. This sense of frustration and dependency is no doubt experienced by all disabled people. But for OT people there is an added dimension in that few people can understand the problem – close relatives and they themselves struggle to understand why they are unable to do certain things. And the rarity of the condition adds to this. With some (more so in the past perhaps) this was compounded by misdiagnoses. One person with OT was misdiagnosed as having MS, and still sometimes refers to this since it is more likely to be understood. Another member of the group reported that OT is not recognised by travel insurers.
There are no known cures for most tremors including OT. Medications to alleviate symptoms include some beta-blockers and some anticonvulsant drugs. All respondents to the survey had taken some medication but about a quarter were not taking any at the time they completed their questionnaires.
Over three quarters had tried Clonazepam, and over one third were continuing to take it. The assessed benefits varied from none to significant, but this appeared to be the most beneficial of all the medications tried. However, one respondent indicated a sense of addiction. Half had tried Gabapentin (Neurontin) with results ranging from no benefit to moderate benefit. Roughly the same applied to Primidone (Mysolene), with just one respondent indicating a significant benefit. Half had tried Propranolol but only two respondents were deriving any benefit. Significant side effects as well as lack of benefit were the factors resulting in many people having tried medication but given them up. In some cases, continuation was based on an expectation that withdrawal would make things worse rather than a clearly identified benefit.
80% of those who returned the questionnaires use a wheelchair. They are not full time users - what used to be called “wheel chair bound” - but occasional users. The wheelchair is a means of sitting rather than standing, and sometimes it is an alternative to walking. Sometimes it is pushed to assist walking. Over half use a scooter and nearly half use a walking stick and/or a folding seat.
When asked how their condition had progressed since being diagnosed, virtually all assessed this as a moderate or significant deterioration. None said they had experienced no change. The same situation applied to progress in the last year or so - not all giving identical ratings, but the overall picture was similar.
About half of the respondents said they had ET, in some cases diagnosed, in others not. Other conditions mentioned were Neuropathy, Restless Legs Syndrome and Arthritis. Some also mentioned Depression (although this was not listed on the questionnaire). It is outside the scope of this report to say whether this is an effect of OT, or medication being taken, or unrelated to OT altogether.
The questionnaire asked if there was anything which could be identified as having triggered the OT. There were references to an accident or other trauma, to stress, HRT, operations involving general anaesthetics and a virus; one had been told it was hereditary but with no known other sufferers in the family. One person said her father had had the same symptoms but was at the time described as “nervous debility”. Most could not identify anything.
There is no doubt that OT is a debilitating condition. Those who have it are, to a greater or lesser extent, unable to lead a full independent life. Their problems are exacerbated by the general lack of understanding, even on the part of health professionals.
They are helped in a variety of ways, including partners/carers (but some are on their own), mutual support from others with the same condition, a determination to maintain a positive attitude, and for some a Christian faith and the benefit of prayer. There is a general feeling that the experience of living with OT should become more widely known.