6) Managing and navigating physically with Orthostatic Tremor.
(Orthostatic Tremor is a neurological disorder of the cerebellum, causing the inability to stand without leg tremors, feelings of instability, and imbalance with gait freezing, tremors cease when walking, sitting, or laying down.)
In the shower is most commonly where the 1st activity a person with Orthostatic Tremor notices the beginning. After getting out of a shower I would go straight for my bed, fatigued with exhaustion, not knowing why standing depleted me. This was before the actual leg tremors began.
When I was in the Mayo Clinic movement Lab, as they were examining my balance and physical capabilities, one of the exercises by way of coaching was shifting my weight foot to foot. I told them that I had been doing that in the past few years in my shower, I didn’t understand why, though I found it amusing when I became aware of my rhythmic movement with my shower routine. My body was giving me direction, helping me cope naturally. This foot-to-foot movement resets the Orthostatic leg tremors. But as many of us know, it can get ridiculously tiring and only works for just a while.
I didn’t realize how much I changed positions as I stood holding conversations or leaned on a counter or wall, which are clinical in teaching OT coping skills. It’s bracing and it causes me to think of the word fulcrum. Maybe because of my essential hand tremors and being in the dental field, I know that resting one finger can steady my whole hand in a procedure and that’s called a fulcrum. So when our bodies brace against or lean on something, we receive support in reducing the leg tremors. I use railings for support or anything solid to prop onto.
I now use the shower seat with my limited standing time.
I brush my teeth while sitting and I have a comfy swivel barrel chair that sits in front of my grooming mirror-ole-vanity with everything handy.
Orthostatic Tremor support groups are great about helping in all these areas of strategic coping skills
If I get up to do something’s in the kitchen, I think through all I am going to do so that I can move fast. Moving slowly in a small space is difficult for those with OT. If I’m going to cook, I have a nice rolling stool with a saddle-looking motorcycle seat that ad-just up and down easily.
I have a fold tripod stool with a shoulder strap and a cane with a fold-up seat to keep in my car, in case I need them to use in a public setting or gathering where standing is involved. Standing in a long line is not possible, though for brief times moving foot to foot can work, those fold-out compact seats help. Some of these scenarios can be embarrassing though necessary and not easy to explain to a watching world.
I have a lightweight petit walker with a seat. It’s all about that seat, not so much the walker itself. (I am learning when there are times to use this walker) Museum’s, craft fairs, traveling in transit settings where there are no carts. Slow walking is the pace that ignites our OT leg tremors, we need a seat to rest and reset. There should be designated handicapped seating. Just as in parking places. There are cultures where the young always stand to provide a seat for their elders…..United States is not that culture, although I know many parents who do teach those respects.
Shopping online and store pick up helps us cope well.
My husband is very helpful with the shopping.
If I go in my local market and move fast throughout for just one or two items, I may not need a cart for support, I will be looking for a short, quick-moving line; If I see a chatty checker, though I would love to chat, I am looking for a fast-moving checker. Have you ever notice how fast those young teenage boys check groceries? Those young dudes are on a mission, that’s the line for me. Not to be profiling, just a consistent observation. 😊
A shopping cart gives support for OTer’s, we prop and lean on them as we move in the process of grocery shopping, though not all shopping stores have carts.
I have used the electrical assistance chair provided at shopping complexes. The 1st time was emotional for me, I was pushing back tears, it was on an exceptional bad leg tremor day. It seemed to indicate a feeling of loss for me, processing mentally. I am hesitant to be seen using one in my small town, with people who have known me for years. I think it would be awkward for them and me also. I believe this is all part of transitioning and adjusting. On a lighter note, I used one in Ikea and progressed into confidence that made my husband a bit nervous as he made some quick saves while I rearranged their furniture.
My husband and I went on a brief trip to San Antonio, we broke the trip up with a stay over in Waco, TX., to tour the Magnolia Silos, and activities (husband-and-wife team Chip and Joanna Gaines, stars of HGTV’s Fixer Upper franchise). It was crowded, there were no carts, and available seating was outside……it was raining. My husband had dropped me off at the front while he parked the car. I was caught off guard and panicked, called my husband to return and he pick me up at the front, I was in tears realizing how unprepared I was. I am learning.
A few days later after navigating the San Antonio River Walk with and without my walker. It was our last day there, my husband talked me into renting the city Razor-scooters, ones that I could sit on. Much smaller than my sport-touring motorcycle, why not. I wish we had rented them all week. You do what you can do…..I am learning.
Maintaining strength is a means of fighting this OT battle. I have an exercise routine with 5lb hand weights and a Schwinn recumbent bike. I can’t brag about consistency because there are times of weakness and fatigue that make it difficult to function in simple daily life.
I see that a lot of OTer’s in the support groups are very disciplined in exercise and it benefits them greatly.
We all know of the unpredictability of good days and bad days. It makes scheduling ahead difficult. This fact is hard to explain. I don’t like to explain. But when we explain we are once again bringing about awareness. Explaining is not complaining – being understood is part of coping.
I tell my husband on my bad days so he can lend assistance.
When I was 1st diagnosed, I was confident in my balance and gait. I felt that I only presented with leg tremors. In just a matter of months, I felt a decline. I get off balance when I stand and turn. I have had a couple of hard falls for the 1st time in my life, experiencing ‘my pride before the fall’, believing I had superior balance in my lifelong motorcycling and roller skating, (two activities I have greatly enjoyed, both have given me a feeling of freedom in movement.)
With the falls and feelings of being off-balance, I have learned the mental adjustment of standing still for a second or two, gathering a feeling of balance. There is an experience within Orthostatic Tremor called freezing-gait when a patient must stand still and wait. Our cerebellum is influenced by this neurological disorder, needing time to make a mental adjustment for balance. Deep diaphragm breathing can help in these situations.
I am not progressing profoundly yet. I am responding to medication, though already I have experienced resistance towards the medication. Always at a day’s end, I am at my worst, I characteristically get burning back fatigue in the evenings, I believe my back works hard for me, providing balance throughout the day.
We all progress at different levels from what I have researched out and also observed within the support groups.
Many have had OT a very long time and require wheelchairs, some manage with only walkers or canes.
It is hard to understand how Orthostatic Tremor changes our lives. Physicians and health care providers should become aware of Orthostatic Tremor and provide the newly diagnosed with help in educating them for coping. We live by all these necessary coping skills while being surrounded by a medical world that has not heard of OT.
Movement disorder medical community please give it recognition. Make sure it is included in the movement disorder Tremor classifications. Help us bring awareness to all medical facilities.
Once again, I will mention, if researchers were to observe on the support sites, they would find many patients affected at younger ages than realized. I consider it a concern to be observed.
We need to raise the bar and take the time to know this rare disorder, help us bring the power of awareness to a level of care.
Not just Movement Disorder Neurologist, all physicians and, health care providers should be AWARE. We may not be as rare as you think we are. It generally takes 6-10 years to diagnosis Orthostatic Tremor. If our health care community has awareness, it would make it possible to direct us to a movement disorder neurologist with expediency. Imagine living with this neurological disorder for many years, not knowing what is going on with pain, severe fatigue and, the disability for standing.
When we stand still our legs tremor, when we walk, sit or lay down the tremor ceases. A 3-year-old could google it. There is a very simple stethoscope procedure all physicians should know about – it is that simple.
The high-frequency leg tremor may not be visible on routine examination as it leads to partially fused muscle con-traction. However, the tremor can be heard with a stethoscope placed over the affected thigh or calf, sounding rather like a distant “helicopter” (Brown, 1995). The latency from the onset of standing to the symptom onset is highly variable, so some subjects may have to stand still for several minutes in order to provoke OT.
The above test may help physicians in assisting patients towards knowing to send them on to a Movement Disorder Neurologist for the rule out testings and classic standing EMG test of verification.
Using smartphone apps available. ‘Study My Tremor’, is one, that has proved a useful indicator for hertz measurements.
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Kim of: http://happytrails2u.blog
Blog Series for Orthostatic Tremor Awareness
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