(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.)
Dedicated to my fellow Orthostatic Tremor warriors in need to be heard.
I hope for researchers, neurologists, physicians, and all health care providers to lean in for a better understanding of this very rare mostly unheard-of neurological disorder we call OT for short or POT for Primary Orthostatic Tremor.
Blog #1) Introduction to Orthostatic Tremor
For understanding this is the characteristics of OT as described by (NORD)The National Organization of Rare Disorders;
The main symptom of primary orthostatic tremor is the occurrence of a rapid tremor affecting both legs while standing. A tremor is involuntary, rhythmic contractions of various muscles. Orthostatic tremor causes feelings of “vibration”, unsteadiness or imbalance in the legs. The tremor associated with primary orthostatic tremor has such high frequency that it may not visible to the naked eye but can be palpated by touching the thighs or calves, by listening to these muscles with a stethoscope, or by electromyography. The tremor is position-specific (standing) and disappears partially or completely when an affected individual walks, sits or lies down. In many cases, the tremor becomes progressively more severe and feelings of unsteadiness become more intense. Some affected individuals can stand for several minutes before the tremor begins; others can only stand momentarily. Eventually, affected individuals may experience stiffness, weakness and, in rare cases, pain in the legs. Orthostatic tremor, despite usually becoming progressively more pronounced, does not develop into other conditions or affect other systems of the body.
Some affected individuals may also have a tremor affecting the arms. In one case reported in the medical literature, overgrowth of the affected muscles (muscular hypertrophy) occurred in association with Primary Orthostatic Tremor.
In short – we can’t stand or we are very limited in standing for any length of time. It causes a very anxious feeling in public settings and we are at an absolute loss for a logical way to express for understanding. It affects elders as well as the young, but primarily elders (60s and over) This neurological disorder of Orthostatic Tremor is progressive.
The rarity is astonishing just through my observations, by way of support groups being few. If I look for support groups within my autoimmune Sjogren’s community, there is a massive amount of support groups and in those support groups, there are 1000s within each group. When an inquest post is made there can be 100 responses or so within an hour. I thought Sjogren’s was somewhat rare with an estimate of around 4 million in America. When I searched for a support group within the ranks of Orthostatic Tremor disorder, I found only a couple of groups in America of around 200 – 300 in numbers with infrequent activity. I am now active on a global one out of Australia called Primary Orthostatic Tremor that has around 900 or so in number. This includes relatives who keep up with interest in their loved ones. They are a very proactive group that bonds together with encouragement. Sharing their stories that lend great help to the newer ones like myself. These support groups, because they have members who have had Orthostatic Tremor for many years can serve with more information than most physicians who know absolutely nothing about it. My team of caregivers (PCP, endocrinologist, rheumatologist and, nurse practitioner) all of who I have great confidence in, had never heard of Orthostatic Tremor.
Within the OT support groups, some OT patients express that their neurologists have told them; in a lifetime within clinical practicing, they might only have one or two OT patients, if any at all. It takes a Movement Disorder Neurologist to have marginal knowledge given the limited resources of research and also limited treatment options.
Researchers and physicians both may benefit to enter into these support groups for observation of patients informing one another of their individual stories. They present great clues for researchers who are pursuing causes, treatment, prevention, care, and cures. Documentation of how it began, what brought it to the forefront, how each patient has progressed, responses to the limited drugs of treatment in their own words can lead to answers. Those that have had it for many years have the wisdom of management. As researchers and physicians, there is information to pass along to patients new to OT such as myself.
I know as a patient of auto immunes I have learned more from those who have journeyed for decades with a particular disorder. There are nurses within support groups who have provided more knowledge than my own very knowledgeable physician and Rheumatologist for my Sjogren’s autoimmune. I advocate for anyone with a chronic illness to find a support group.
If you have Orthostatic Tremor;
Get very invested in telling every detail to help move Orthostatic Tremor disorder to the forefront by detailing with clarity the pathway of your OT battle. I want to know more as a patient. Researchers need relevant details of information, from our journaling. Leave it to the profound knowledge of researchers to do the analyzing by our documentations. We are pieces to a puzzle. Our detailed stories have the potential to bring about answers in RESEARCH and AWARENESS.
Orthostatic Tremor is a very obscure disorder, our voices need to be profound within the support groups and in media.
Be heard. Advocate for awareness. Articulate details of your journey.
I want this blog to be beneficial to both those who share this condition and also for those who are or will be a part of OT medical research of which is minimal at this point because of its extreme rareness. The most recent being out of Mayo – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6886496/
Please feel free to share this blog and also encourage your friends, loved ones, and your health care team to share.
To share this blog simply touch the FB share button or hold down on the blog URL and chose copy, to copy the link below.
To move from blog to blog in this series you will find towards the bottom of each blog, just above the calendar, you can navigate from blog to blog.
Kim of: http://happytrails2u.blog
Blog Series for Orthostatic Tremor Awareness
2) Orthostatic Tremor; Essentials of Advocating
3) My story – Orthostatic Tremor
(Getting our Orthostatic Tremor stories out there. That’s the one I am sending out to medical research potentials.)
4) Send and informative letter to your health care team (because most of them have never heard of Orthostatic Tremor)
5) Managing mentally with Orthostatic Tremor
6) Managing and navigating physically with Orthostatic Tremor
7) Helping your family members and loved ones understand Orthostatic Tremor.
8) I collected all research and resources on Orthostatic Tremor along the way.
9) Orthostatic Tremor Encouragements and strength in Faith.
Please feel free to reply, your replies are valued and appreciated.
Be kind and helpful in your replies.
AWARENESS of Orthostatic Tremor is the goal.
Attention for research purposes is the BONUS.
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