There are very few events in our day that aren’t touched by OT, below are a few examples. Please visit the forum to read more or contribute your own thoughts and experiences.
Link to general OT forum discussion
Link to forum discussion on “things” that help such as stools, walkers, cane chairs etc.
The information and studies that are related to OT are extremely limited. Most of the available reports and studies throughout the world are a number of years old and generally involve a very small number of patients with very few follow up reports. The other problem is much of the information is repetitive.
The symptoms of OT are now defined but the etiology is unknown. A test makes its' definition conclusive because the range of tremor of OT is such a high frequency that it is distinct from other tremors such as Parkinson's and Essential, etc. However, there are very few new cases reported, most doctors do not identify it because they are not aware of it. I hope awareness will prevent OT from being missed as a diagnosis because if it is identified the symptoms are treatable.
What you can do:
1. The first thing you can do is to take care of yourself, both emotionally and physically.
2. Keep searching for answers (if you find any, email me)
3. Join the forum - this may be the best thing that you can do to improve living with OT, discuss your experiences, compare notes, and make friends that truly understand.
Below are some everyday tips to help cope with OT, read through the many posts on the forum for more information or post your own ideas.
*Always check with your doctor before starting an exercise program.
Exercise: An exercise and/or stretching program that is adapted to your capabilities is important if we are to maintain/maximize our mobility. This helps allow us to continue to be independent, to shop, travel, cook and other day to day tasks. But what exercise and how much needs to be based upon your body and ability. A program could include core strength training, flexibility and balance exercises, for example chair yoga. A warning: We produce adrenalin when exercising and adrenalin increases our tremors. A brief rest period usually brings the tremors under control. Increase of adrenaline and the associated increased tremor also occurs when you are stressed, temperature change, tired etc.
American Academy of Neurology article on exercise and movement disorders
Walking: I have found that a regular walking program of 30 minutes/day is the best single activity for maintaining my mobility. This recommendation is commonly accepted for prevention and maintenance among adults and many OT sufferers can enjoy walking at a moderate to brisk pace for a short period of time. However we all seem to experience difficulties when trying to walk slowly, as in visiting an art gallery or walking at a snail’s pace in an airport line up. Many of us in these situations begin to feel exhausted, agitated and in a state of off balance ( mentally and physically). Further when faced with an obstacle such as another person moving towards us or worse as in the mall, a group of persons, we then tend to dither / panic and feel most insecure, again it is both mental and physical. Another difficulty is presented in the ‘transition’ period as we move into a full walking motion. Simply moving from a seated position into walking motion causes us to hesitate and physically ‘stammer’! Moving from swimming in a lake to fully standing is overwhelming without some type of support. Changing from kneeling or sitting on the floor to standing and moving is anxiety provoking and produces unsteadiness. We must conclude that our tremors worsen in transition situations. However we should not let these short awkward periods keep us from engaging in those activities that will keep us fit and functioning. Dr Torres-Russotto, a neurologist who is very interested in our disease wrote, “ Anyone who has unresolved gait problems should test for OT as it is a simple test that can prove conclusively that they have OT.” He acknowledges that we have gait problems.
Link to more information about and prevention of falls
Shopping and Activity: as with many events, planning and familiarity with the environment is good. What has probably become second nature to the seasoned OT’r is to scan the room or location for chairs, or benches. And as in many situations, ask for help, it doesn’t require a thorough description of OT, just a polite - “ I can’t stand for very long, would you mind....... “. If you are shopping with someone and you find that the crowds, lines and cluttered areas are overwhelming or you have over exerted yourself for the day, ask someone if a wheelchair is available ( usually in large malls ), or if you find yourself in this situation and you can’t move, find a place to sit, and wait until the crowd lessens and you have relaxed. The key is to find ways and tools that you can use to maintain your lifestyle and not to avoid the activity. We must be inventive and just do things differently.
Travel: similar to shopping, it’s important to ask for help. If you are traveling by Air, call ahead or online and request a wheelchair and special seating. This is true of many situations, ask for help and you will most likely be pleasantly surprised. Also, print out the OT travel tag which is available from the link below, the presence of the universal handicap is very helpful and easily identifiable.
Link to OT Travel Card
This website is intended to be an informal guide, and is not a substitute for medical advice.