Global Rare Disease Awarenes

February 28th is a day set aside for rare disease awareness 

A global organization partnering with NORD (National Organization for Rare Disorders)

 







My name is Kim Fowler and this is my focus story of rare disorder awareness. 

I have discovered personally what it is like to have a rare disorder, under the crisis of my medical team having no knowledge or awareness of it at all.

I have Primary Orthostatic Tremor. OT for short or POT – Primary Orthostatic Tremor, primary because classic OT does not have any other Neurological issues present. (Not to be confused with Postural Orthostatic Tachycardia Syndrome, which is a different disorder referred to as POTS)

It can be a very long journey to receive a diagnosis for rare disorders. Many times in creating awareness we can then create a path for others that live with the same disorder of symptom confusion and no medical direction. It has to start with medical facilities being informed; who can then refer patients into a specialized medical field for care. 

I write this for awareness. And also that my journey may help others with rare disorders or diseases.

For as far back as 6 years when standing engaged in a conversation standing still, I would feel weak, nauseous, and clammy; feeling like I could just melt to the floor. I would leave and go sit. As time passed I experienced it more frequently while cutting my husband’s hair while standing doing kitchen prep, and while showering. Turns out that showering is when most patients of OT first notice it, or they find themselves leaning for support on counters. My legs had begun to tremor, in church worship while standing.

Because I have had autoimmune diseases for many years, (Hashimoto’s and Sjogren’s) I attributed it to the very common autoimmune fatigue.

A little over a year ago it turned into very visible leg tremors while standing, causing me to feel unstable.

One evening last February 2021, standing doing kitchen prep for dinner, I pushed myself too hard while feeling that familiar weakness; later in the evening, I had a severe spike in my usually very normal blood pressure, which seemed to have brought on the leg tremors while standing to become more consistent. My physicians had no clue what to tell me. All tests came back normal. Standing leg tremors and feeling weak had become chronic and consistent.

My Endocrinologist, who is a brilliant doctor told me I needed to find a Movement Disorder Neurologist. He sent a referral request that failed as the only Movement Disorder Neurologist in our area is not taking new patients.

I went to my PCP (primary care physician) who informed me of the shortage of Neurologists in our area with a very long waiting list for available appointments.

I began to google my symptom of standing leg tremors, which ceased when walking or sitting down. It was a very simple search, telling me of Orthostatic Tremors and describing exactly what I was going through. This search revealed the knowledge of its extreme rarity. I googled it over and over, in my unbelief, as it was revealed to be a rare neurodegenerative and progressive disorder. Then I began to read all the research. The most current research comes from the Mayo Neurological Research Team of Rochester, MN.

I had repeatedly gone to my PCP, who may have been tired of trying to understand my standing leg tremors. He ask me if I drank alcohol – two different times he asks me. “No, not ever,” I replied both times smiling at the question. 

I ask him, “Have you ever heard of Orthostatic Tremor?” to which he replied, “No.”

I ask him to look it up. 

And also – I need a referral to Mayo Clinic of Rochester, MN. I came prepared with an informed referral plan. A good physician of any kind should present with clinical curiosity in leaning in to help you towards a specific health care direction.

This whole process took weeks with insurance denials trying to get pre-authorization to get outside my insurance network. Referrals were not processed through to Mayo Neurology Clinic or my insurance. The system was failing me. I appealed, repealed, and also did a fast re-appeal to my insurance. While referrals were falling short in delivering. I was advised to send the referrals myself. And also ask my PCP to write a letter to my insurance company explaining my need for a Movement Disorder Neurologist. I faxed the PCP referral and also faxed a personal letter to one of the Mayo research team leaders of Orthostatic Tremor. Finally, the timing all came together.

I had an incredibly compassionate caring insurance case manager who coached me and assisted my passage to Mayo Clinic and even advocated with each of the neurological rule-out tests in need of insurance pre-authorizations. To diagnose a rare disorder takes a lot of ruling out other factors. The main confirming OT test is a standing EMG, that was the test I was anticipating. I completed tests in April and then returned In May for a conclusive diagnosis. 

The Movement Disorder Neurologist at Mayo said, “you have Orthostatic Tremor.” I did not tell this physician that I had googled and read all the research papers. I just let him inform me of what direction we would take. My parting question – I told him I had ridden motorcycles since I was a kid and I ask him if I could continue. He said, “Sure, why not.” with his beautiful Italian accent.

What the Movement Disorder Neurologist’s tell OT patients – there is very little by way of help for this rare neurological disorder. I already knew that. I had read it. 

Being able to advocate is essential with the complex separate medical hurdles of navigating for a diagnosis, solid answers, and direction for excellence in health care treatments. And also navigating through the complexities of insurance. In preparation for health care navigations, if you are unable to advocate for yourself, bring a loved one or family member. It helps for support and it helps to have 2 sets of ears. Also, someone with you brings greater accountability to not be set aside. Keep a file of your Insurance information, test results, health history, and medications with scheduling; an organized up to date hard copy file, and also a medical file record on your phone and tablet that is printable and easily sent. I have printed notes for my husband to look at while I articulated verbally my symptoms and progression so he can make sure I cover it all with sufficiency. I believe physicians appreciate good preparation. It’s respectful of their schedules. 

For clinical understanding these are 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 a 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.

My words;

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 as revealed in current research.

Before I was put on medication, my legs began to tremor within 1 minute. Now I have around 5 minutes. I can shift leg to leg as that resets the tremors somewhat like walking. Standing and leaning on a wall or counter for support or using the shifting leg strategy are coping strategies, even then it wears me out and causes great fatigue later.

The difficult part of a disease or disorder that I call –  “invisible”, is that no one knows how you feel, or the mental resistance it takes to fight the depression involved as a patient processing and thinking through it and on into knowing the fight that lies ahead. The first time you walk up to an electric mobile cart in a store you are pushing back tears and pride all at once. Not wanting to be seen by someone you know. Because hey…I can walk well, but I can not slow walk for long or stand for long when shopping. Pushing a shopping cart helps for a brief shopping trip.

Most importantly I can ride my motorcycle, as I am seated and supported. My husband and I have traveled many cross-country miles over the past 15 years together, all over America. So… I will be able to call it all good when I can no longer ride.

One research neurologist gives it a very good word picture as he says – it’s like riding a bicycle, as you slow down you become wobbly and at a stop, you have need to prop yourself up. This should help for excellent understanding.

Coping strategies; I use a rolling stool chair for kitchen prep. I sit to shower. I sit to brush my teeth. I simply sit down for any task that requires too much time standing still. I keep a small shoulder-strapped folding tripod stool in my car. I lean, sit or move leg to leg when holding a conversation. When I see a waiting line for anything I get an anxious feeling and do deep breathing and leg shifting, which can become exhausting as it does not work for very long. My husband does most of the quick trip grocery shopping. Stress is a factor in any neurological disorder. I mostly quit watching the news and for the most part limit social media. I isolate more than I should and I am hoping I move past that. I have my buddy/love husband of 42 years for support. I love to see our grandchildren. And come spring I will be on my motorcycle. 

The rarity of OT is astonishing just through my observations. When I searched for a support group within the ranks of Orthostatic Tremor disorder. The only sufficiently active group is based out of Australia with global representation. Their numbers, which includes concerned loved ones and relatives of OT patients is just under 1000.

I can not stress enough the importance of a support group within a rare disorder or disease. This group of Primary Orthostatic Tremor patients shares years of experience that leads to coping advice and the latest information of research studies. A very proactive group that bonds together with encouragement. Sharing their OT journeys, lending great support to the newer ones like myself. 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’s expertise with marginal knowledge given the limited resources of research and also limited treatment options to diagnose and give clinical support.

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. Testimony and documentation of how their OT journey began and has progressed over the years should be valued information for research. Orthostatic Tremor is yet in its infant stages of research.

Along the way, I have met fellow OT patients who are vigilantes in pursuit of further research. I signed consent for Mayo to use my records for research.

UAMS has asked if I would be interested in being a part of a long-term study.

I say yes, I want to be a part of moving this research along.

Increased Orthostatic Tremor knowledge and awareness in the medical field is a great benefit for OT diagnostics. My team of caregivers (PCP, endocrinologist, rheumatologist and, nurse practitioner) all of who I have great confidence in, had never heard of Orthostatic Tremor due to its rarity.

I know there are many physical unknowns and physicians can not be expected to know everything.

Awareness is essential for diagnostics with rare diseases and disorders.

Blog 9) Orthostatic Tremor and a Walk in Faith

9) Orthostatic Tremor and a Walk in Faith.

Oh my goodness.
Are you still here. 😂
I have depleted my mind.
Therapeutical writing……no it was brain exhausting.
Blog 9 in my Orthostatic Tremor series, ENDS here.

I am old, worn out with Chronic auto immunes and now OT ;
ORTHOSTATIC TREMOR AWARENESS BLOG – in my elder state, I apologize for repeating stuff.

I believe I included in blog 5, my encouragements with a couple of book recommendations and scriptures.
I am aware that some reading this may not join in with my Faith.
But that is what I have to offer.
I invite you to read what is personal to me.
Or you may want to not read of my faith.

It’s up to you.

This is an older blog of mine.
Go read it and come back as I try to finish WELL with this OT Awareness Blog) 9
https://happytrails2u.blog/2016/06/29/my-jesus-2/

Regarding my Orthostatic Tremor, in the words of Andrew Murray from his book, “Jesus Himself”.

“Oh! my Lord Jesus, though I do not understand it, though I cannot grasp it, though my struggles avail nothing, I am not going to let Thee go. If it is possible for a sinner on earth to have Jesus every day, every hour, and every moment in resurrection power dwelling in his heart, shining within him, filling him with love and joy,—if that is possible, I want it.”

(Many of Andrew Murray’s books are on Amazon for free kindle downloads and also utube has many, many of his books to listen to audibly for free.)

The above quote set my heart towards Jacob in Genesis 32:22-30
Read, study it and meditate on it and please take it personally.

I don’t like to say favorites in the Bible, although this passage would be a mark for me for all my life as God’s child, restoring me over and over – I go back to it when I audible pray fervently, pouring out and then receiving holy restoration in my walk.

And now it is fitting with my Orthostatic Tremor journey too.

After Jacob offered up to Esau a present of peace he entered into deep fervent prayer. I can’t tell it quite like my faithful study partner,
Mathew Henry, breaks this passage down so well in his Bible commentary;

Genesis 32:24-32
A great while before day, Jacob being alone, more fully spread his fears before God in prayer. While thus employed, One in the likeness of a man wrestled with him. When the spirit helpeth our infirmities, and our earnest and vast desires can scarcely find words to utter them, and we still mean more than we can express, then prayer is indeed wrestling with God. However tried or discouraged, we shall prevail; and prevailing with Him in prayer, we shall prevail against all enemies that strive with us. Nothing requires more vigour and unceasing exertion than wrestling. It is an emblem of the true spirit of faith and prayer. Jacob kept his ground; though the struggle continued long, this did not shake his faith, nor silence his prayer. He will have a blessing, and had rather have all his bone put out of joint than go away without one. Those who would have the blessing of Christ, must resolve to take no denial. The fervent prayer is the effectual prayer. The Angel puts a lasting mark of honour upon him, by changing his name. Jacob signifies a supplanter. From henceforth he shall be celebrated, not for craft and artful management, but for true valour. Thou shalt be called Israel, a prince with God, a name greater than those of the great men of the earth. He is a prince indeed that is a prince with God; those are truly honourable that are mighty in prayer. Having power with God, he shall have power with men too; he shall prevail, and gain Esau’s favour. Jacob gives a new name to the place. He calls it Peniel, the face of God, because there he had seen the appearance of God, and obtained the favour of God. It becomes those whom God honours, to admire his grace towards them. The Angel who wrestled with Jacob was the second Person in the sacred Trinity, who was afterwards God manifest in the flesh, and who, dwelling in human nature, is called Immanuel, Hosea 12:4, Hosea 12:5. Jacob halted on his thigh. It might serve to keep him from being lifted up with the abundance of the revelations. The sun rose on Jacob: it is sun-rise with that soul, which has had communion with God.

CHANGED HIS WALK
I like this story of Jacob because I know how broken I have felt at times and I know how broken each of us feels at times. We wrestle life. In those times, I have prayed fervently with sincerely needing to feel closer to my Father/Lord and wanting clarity. An intervention prayer such as Jacob’s wrestling and pleading for a blessing, should change his walk and cause him to rely on God for the great journeys he had ahead. OT has brought me closer in need and reliance on a close personal walk. My OT prayers were surrendering to a new change in my life. And it is okay. I seek the face of God.

Genesis 32:31 NLT
[31] The sun was rising as Jacob left Peniel, and he was limping because of the injury to his hip.

Orthostatic Tremor ….

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Blog 9)

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

Blog 1)

Blog 2)

Blog 3)

Blog 4)

Blog 5)

Blog 6)

Blog 7)

Blog 8)

Blog 9)

Blog to follow; 🤔

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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Blog 8) Relevant Research and Resources on Orthostatic Tremor

Blog 8)
Gee whiz when I began to realize the rarity and lack of clinical awareness,
I started loading every research article I could find, along with every OT support site and then began studying the people on the sites, their history, and stories.
While my physician said –
“Nope never heard of it.”

Why have I contributed so much effort to OT awareness?
Why have I invested so much time and energy towards OT awareness?
Why have I blogged so relentlessly with a whole series toward ORTHOSTATIC TREMOR AWARENESS?
Regardless of September being Orthostatic Tremor Awareness month…..
When I read the quotes regarding its rarity from leading researchers, I simply feel challenged. If I were to be analyzed with the “fight or flight” theory, presently – I am in fight mode. I feel like “unawareness” and “unknown” are walls to be kicked down.
Read the following quotes within the research articles.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5039949/

“Orthostatic tremor (OT) remains among the most intriguing and poorly understood of movement disorders. “

“Owing to its rarity, the current understanding of OT is limited and is mostly based on small case series or case reports.”

“Scientific understanding of OT is in its infancy.”

“OT is not widely recognized by physicians who are not movement disorders experts, which often results in misdiagnosis for the unfortunate patients, who then may be subjected to inappropriate or unnecessary tests and treatment.”

https://clinicalmovementdisorders.biomedcentral.com/articles/10.1186/s40734-016-0048-5

“Primary orthostatic tremor is a rare disorder that is still under-diagnosed or misdiagnosed”

“We review the clinical signs of POT that may help to increase the awareness of doctors and improve the diagnosis accuracy”

“Nevertheless, this condition is relatively easy to diagnose when you listen carefully to your patients, as they often report the main clinical features: lower body tremor activated upon standing (with feelings of unsteadiness and decreased time immobile in the upright position) which is improved by walking and absent when sitting or lying down”

https://www.nebraskamed.com/orthostatic-tremor-imagine-being-able-to-walk-but-not-stand

“Never heard of orthostatic tremor (OT)? Most physicians haven’t, let alone the general public.”

In collecting articles and research studies, I discovered most of them to be outdated. Many are articles of opinions of research studies. There are articles of updates and republishing. Nothing new comparatively one to another. Cerebellum involvement studies. Classification opinions regarding hertz values. All very interesting articles and resources, just many are simply outdated.

Mayo Neurology research has delivered the most current conclusive research of 2019;
https://tremorjournal.org/article/10.5334/tohm.513/

Clonazepam has been the first-line drug of treatment used for many years and seems to present good results for many and not so good for many. The downside; our body builds up a resistance maybe as OT progresses. Many patients seem to have an intolerance to the side effects. The Mayo Movement Disorder Neurologist was careful to tell me that treatment is very limited, with sometimes minimal results.

It seems most patients who have had OT a long time, chose to not take medication, due to side effects, mainly drowsy with slower thought processing. We are all different. Gabapentin along with the Clonazepam seems to be a combo with many OT patients. Primodine is the second line in treatment.
In more recent years there has been a push for DBS (Deep brain stimulation). I have observed on the support boards of those who have had DBS; it’s invasive, expensive, and insurance does not pay for it. I have heard of successes and also not-so-successful stories with DBS procedures. I would believe it probably is a last resort for the more severe cases and patients with medication-refractory OT (term used when they are not responsive to medication.) DBS is a neurosurgical procedure that uses implanted electrodes and electrical stimulation to treat movement disorders. Maybe future improvements will come with DBS and insurance will be forced to consider the quality of life improvement.

One of the newer technologies in process for treatment
https://institutducerveau-icm.org/en/actualite/a-new-non-invasive-therapy-for-the-treatment-of-primary-orthostatic-tremor-pot-trans-spinal-electrical-stimulation/ a quote from the above article.
“A study led by Jean-Charles Lamy, member of the Mov’it team and operational manager of PANAM the platform for the exploration of movement at Paris Brain Institute has just shown, thanks to research, that trans-spinal electrical stimulation improves both the time in a standing position and reduces the amplitude as well as the frequency of tremor. This study is published in the journal “Movement Disorders”.

Below Dr. Karen D. Sullivan’s Orthostatic Tremor videos, she is very informative and gifted in speaking directly to OT patients. She is a strong advocate for patients with Orthostatic Tremor. Below are her utube videos that have helped so many patients better understand OT. She is a doctor of Neuropsychology.
Orthostatic Webinar preview https://youtu.be/ea6yHr4ssPw
Orthostatic Tremor https://youtu.be/i58rPitK5uw
Orthostatic Tremor and Gait https://youtu.be/iU3dOqBkoHA
She is also on Facebook called, I CARE FOR YOUR BRAIN

Below is a fairly current (2019) research on DBS (from Mayo Clinical research)
https://cp.neurology.org/content/10/4/324

I noticed one of the researchers, being Dr. Bryan Klassen, the Movement Disorder Neurologist who administered my EMG (electromyographic) analysis at Mayo. The classic test of determining and confirming OT.
Mayo is an impressive American medical legend, globally. Ken Burns produced a 2-hour video of its iconic history. It can be accessed on PBS.

https://www.pbs.org/video/the-mayo-clinic-faith-hope-science-czhdtb/

As I realized Mayo of Rochester was my hope for processing expedient diagnostics, I ask to be referred to Dr. Anhar Hassan, who had been involved in the most recent advanced research study completed in 2019.

My original appointment was with her. I was so disappointed when on the day we drove into Rochester, MN., I got a call informing me; she had something come up and was unavailable. My husband comforted me in that they were getting me in with another neurologist who would examine me and begin the process of diagnostics. We processed through in 4 days last mid-April 2021 and returned the second week in May for results and a confirmed Orthostatic Tremor diagnosis.

I am presently on Clonazepam 0.5 twice daily along with Gabapentin 300mg 4 times daily. I can stand still for around 5 min or so, though I feel uneasy as I stand. If I shift side to side, I can last around 15 minutes and then I sit. Sometimes if I push my limit, I get a weak ill-feeling, break a sweat, and feel nauseous. The onset of leg tremors upon standing began for me in February 2021 with 1-2 minutes induced leg tremors, consistently. Towards evenings tremors were immediately and present with slow walking as I got to bed very early trying to put them to rest. I could feel them advance upward with evening fatigue and spinal back burning after a day’s fight to be normal. This was after many years of being unable to stand still for over 15-20 minutes, before having, an overwhelming need to sit down. (My story is in blog 3 of this Orthostatic Tremor awareness series)

This is an article By Diego Torres-Russotto, M.D., Neurologist – he leads out in the Orthostatic fight with a wealth of knowledge – he is our advocator.
There are also a series of uTube videos to be found of OT conferences he has been presented in. (Search them out on UTube)

https://www.nebraskamed.com/orthostatic-tremor-imagine-being-able-to-walk-but-not-stand

With his opening quote-
“Never heard of orthostatic tremor (OT)? Most physicians haven’t, let alone the general public. But for the small number of adults who develop OT around midlife, it’s very real, very life-limiting, and very, very hard to explain to others.
Patients with OT can walk quite well at a brisk pace. But if they slow down or stand still they feel that their legs no longer hold them up! It has been compared to riding a bicycle: you’re fine when you’re riding along, wobbly when you slow down, and unable to stay upright when holding still.”
(The above word picture is true – you slow down on a bicycle and you fall over without propping.)

In this article, he mentions Gloria Nelson MacWright he quoted in tribute to her this, “After her diagnosis in 2000, Gloria Nelson MacWright created a website called http://www.orthostatictremor.org to see if there was anyone else out there. She began hearing from others worldwide, and now over 1,100 people have registered on the site to create the Orthostatic Tremor Community.”

Below is her site that she contributed for awareness and help.

https://www.orthostatictremor.org

I appreciate that she logged her journey for us in this article below;

https://www.orthostatictremor.org/my-experience.html

And also join in with interactive support on Gloria’s resource of helpful support;

https://www.orthostatictremor.org/phpBB3/index.php?sid=8d6b685202e07d15e323c3a001458729

This U.K. National Tremor Foundation site is great to help to inform others with simple details;
https://tremor.org.uk/orthostatic-tremor

If you go on Facebook and search; Orthostatic Tremor groups, you will find several that have very random postings, from the U.S and the U.K., I found support in them all helpful, although Australia has the most volume in traffic postings and people involved, I appreciate their support and the work they put into helping encourage and inform their members, Primary Orthostatic Tremor on Facebook.

OT Being a marginalized community within research, support groups are essential. We learn from one another.
Hopefully, research may learn from us with observations into our groups.

Research you are welcome, we invite you.
Go to the support groups and study patients with their experiences.
Observe the ages, there are many young patients with OT.
Observe that many of us who are older, tell of an inability to stand for very long when we were younger.
Observe that we have spinal issues, include that in your research.
KNOW that our medical communities do not know of or have ever heard of Orthostatic Tremor.
Being very thankful for research, I pray for clinical curiosity to be a driving force among the many researchers and physicians who do care about Orthostatic Tremor. Please help us in making Orthostatic Tremor KNOWN, so that diagnostics have a path to us.

Below is our National source for calculating rare diseases
2021 Orthostatic Tremor has been documented with 390 cases in our nationwide. (US)
https://www.orpha.net/orphacom/cahiers/docs/GB/Prevalence_of_rare_diseases_by_alphabetical_list.pdf

Once again Mayo Clinic has completed the most current, conclusive article to date. It would be my go-to for valid information.
https://tremorjournal.org/article/10.5334/tohm.513/

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 at the bottom. Or hold down on the icon button below and chose to copy.

Blog 8)

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

Blog 1)

Blog 2)

Blog 3)

Blog 4)

Blog 5)

Blog 6)

Blog 7)

Blog 8)

Blog 9)

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.

Use the share button.

Blog 7) Helping your family members and loved ones understand Orthostatic Tremor.

7) Helping your family members and loved ones understand Orthostatic Tremor.

If you have been reading along throughout this Orthostatic Tremor blog series and missed out on a detailed description here is an explanation directly from a Handbook of Clinical Neurology, Vol. 100 (3rd series) Hyperkinetic Movement Disorders

W.J. Weiner and E. Tolosa, Editors

Fig. 35.1). Characteristically, the symptoms improve markedly on sitting or walking. The urge to sit down or to move can be so strong that patients often avoid situations where they have to stand still for a period of time, such as when queuing. When forced to stand still, some patients try to shift the weight from one leg to the other, walk on the spot, or lean against a wall. Patients are eventually forced to sit down or walk after a short time, ranging from seconds to several minutes, depending on the severity of the disease. As the disease progresses, tremor may encroach upon the stance phase of gait. Under these circumstances, patients have difficulty walking slowly and managing stairs. Although OT is frequently considered a benign disorder, inability to stand still affects activities of daily living and has a serious impact on the patient’s health-related quality of life. One study found that 11 of 20 OT patients were depressed as assessed by the Beck Depression Inventory (Gerschlager et al., 2003).

It is a progressive neurological disorder of the cerebellum.

The above is a clinical explanation. And very outdated (2003) in terms of current research. Though any information googled on current research is an example of stagnation for Orthostatic Tremor research – same information….

Research does not know what causes it, there is no real conclusive treatment option, no cure. Research has only figured out the most defined way to diagnose and classify it through EMG testing. The process of time has proved it to be progressive. Because of its rarity, it is not legitimized within most major medical facilities. It is yet unknown and unheard of by almost all the medical community except for Movement Disorder Neurologist. The medical world does not understand. We who have it do not understand. How can the people of our lives understand? 

Being recently diagnosed with OT I am fresh for observations. I have read all the research. I have joined all the support groups. I have blogged my journey well and am diligently leaving a path for all those who may find themselves in this rare unknown neurological disorder of Orthostatic Tremor. I am yet in the processing stages and will be for a while.

This blog 7 is for those who have loved ones, relatives, or a friend with OT.

I hope to help you understand…..how to comfort, love, and support your OT loved one, relative, or friend.

We can’t stand in a line. How do you explain that to strangers, when you walk up looking normal? Even registering, standing in line in a medical setting. 

We feel ill at ease where we once felt confident going in and out of public places. It’s not because we are old. It’s not because we are “lazy”. The battle we fight is to stay connected and valid. One of the things we need most is for the people who surround us in our lives to understand these things. Please google Orthostatic Tremor, study it, and place yourself inside the battle with your loved one.

Empathy is the one thing you can contribute.

Even when you know it well, you will forget. My husband knows it well, he has moved through this past year with me when neither of us understood what was going on. We both now know fully all there is to know about OT. And still ……I have to say to him – “I have to sit down.” We may walk out into the yard and we stop to talk and I say – I have to sit down or walk. He may grab the grocery cart to push it for me as he has for 42 years and I say, give me that cart. 😊 He may stall out doing something as we move together and I keep walking. When we go into a store together I’m like Flash Gordon, unless I have a cart to lean on. And many times when we get to a checkout line, I just walk on out to the car. I have to understand that my husband is also processing, adjusting, and thinking of the progression of where it may lead.

I like to think positively.

My husband has had a few cooking lessons and I laughed as he slowly realized mid-way through chicken pot pie…..it was not as easy as he thought it would be. When we got my rolling kitchen stool that helped.

This whole year has been a transition.

I was very emotional in the beginning, with fear and so sad that I would become a burden on my husband. Not be fully me. I thought I was losing myself. I was on a passage of grief. My husband convinced me – We are a team. I found peace and also strength as we found a path to Mayo Neurology Clinic of Rochester; a diagnosis, answers, and direction. Though it is not an easy direction. OT is now a part of our lives.

To you who are loved ones and family members; 

Ask your OT person – how are you doing? Speak concern. Be concerned. Be understanding.

Otherwise, we may think you don’t care. When we are emotionally dealing with what is so evident to be a transition into a progressive impairing state in our lives. 

Be present.

Show you care.

Feeling loved is a healing power, mentally and physically.

Depression comes with Orthostatic Tremor.

Strife and stress is a physical agitator. I will confess; I defriended a couple of FaceBook hostiles, as I reduced stress in several areas. Turned off the news too.

I have been adjusting my life accordingly without any apologies.

We present well. It’s an invisible disorder for the most part.

I like to be upbeat – I am an optimist, but all the above applies.

I love to visit with people, but if I am standing; (in my mind) I am fighting a battle you can not see. I sport a great sense of humor and a mind full of Kim input, but my stander upper is broken.

I went to church the other day after a very hard week and many people ask, “how are you doing”? I said, “fine”. I made it through church services. But missed a couple of other later church activities – please understand. I am the pastor’s wife, so I have thoughts of – what are people thinking? My husband will say, “It does not matter what people think”. I now agree.

I am good in the 1st half of a day, my decline in energy is around 2-3 pm with major fatigue of auto immunes and Orthostatic Tremor.

We who have OT;

“We are fighting a battle you can not see.”

It concerns me when I cruise through the support groups and see those with broken hearts because their families and friends do not understand and say or imply cruel unsupportive things.

I read all the answers of support with thankfulness to those who give encouragement and wise advice. But I think, how sad that encouragements come from so far away, from people who are strangers and not from those of their surrounding lives. This angers my rebel heart that while someone is fighting a physical battle the worst of their battle comes from those who should be holding them up with love and support, joining them in their battle.

– Have printouts of information to give for written understanding.

– Share this blog site with them.

– Ask your family members to join your OT support group; within that support group, they will discern from others with OT and recognize ways to support and understand you.

– Value the ones who come along beside you. Express your appreciation.

– Let go of those who do not.

– Husband or wives, daughters and/or sons, you are the front line. Study Orthostatic Tremor, show your love with big hugs, authentic connections, and conversation to give them value. 

I believe we are living in a world that has forgotten how to love one another.

It’s like we are in a loop of life with no real caring contact, eye to eye, heart to heart.

Our devices have replaced relationships – We all say that, but we don’t set them down.

We speak about love and kindness with no actual execution.

I am so sorry if you are fighting this battle alone. Stay tight with the support groups. Find community somewhere, a strong church family is the best or a community group of some kind.

For you younger OTer’s who work a job – in all this…..you have my heart.

Take printout information to your management and co-workers, ask for understanding.

You are not alone.

by Lauren Daigle’s – Hold on to Me

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Blog 7

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

Blog 1) 

Blog 2) 

Blog 3) 

Blog 4)

Blog 5) 

Blog 6)

Blog 7)

Blog 8)

Blog 9)

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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Blog 6) Managing and navigating physically with Orthostatic Tremor. 

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.)

Blog 6)

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.

StudyMyTremor

Kim of
http://happytrails2u.blog

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 at the bottom. Or hold down on icon button below and chose to copy.

To move from blog to blog in this series you will find towards the bottom of each blog, just above the calender, you can navigate from blog to blog.

Kim of: http://happytrails2u.blog

Blog Series for Orthostatic Tremor Awareness


Blog 7)

Blog 8)

Blog 9)

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.

Use the share button.


Blog 2) Orthostatic Tremor – Essentials of Advocating

(Orthostatic Tremor is a rare 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.)

Blog 2) Advocating

1) Navigating for a diagnosis, solid answers, and direction for excellence in health care treatments.
2) Navigating through the complexities of your insurance.

Advocating is important towards medical care not only with Orthostatic Tremor but also for the multitudes of people who suffer from many complex disorders and chronic illnesses. I hope this particular blog will give you guidance in your path to excellent health care.
My experience with auto immunes, degenerative disc disease, and now Orthostatic Tremor have motivated me towards the necessity of being prepared and ready to advocate two separate medical hurdles;
1) Navigating for a diagnosis, solid answers, and direction for excellence in health care treatments.

Doctors are very busy, this gives us limited time to speak. A good doctor understands our time value as we understand his time value. It’s a small investment of time at great medical cost for the patient. I think we all experience pre-appointment anxiety in knowing the short time space of verbal expression for understanding. They are on a schedule. Be prepared with your symptoms and questions, write it all down.
I use my iPhone and iPad synced with a special writing app that holds all my records, test and labs results, a summary history with dates of diagnosis and treatment, all my insurance information, phone numbers for insurance support, phone numbers and addresses of my physicians and of course my medications and the scheduling of them. I separate these into files in my medical app. This purposeful organization keeps me from feeling frustrated when filling out medical forms and questionnaires, just knowing I have it all at my fingertips in preparation for an appointment. Thankful for smart devices. But I also keep hard copy files too…..just in case technology fails.

I have experienced that good doctors appreciate the quick information. Although if you are in a good medical facility in your area they have access to all your records. In recent years it is very easy for all medical facilities to link in and see your physical histories and that’s a good thing. Although I have seen things overlooked and not passed on correctly. There is a personal error and it is important to catch it and get it corrected.
I keep a screenshot photo album of my tests and letters of results on my phone and iPad even though I have access to my medical site, it gives reliable easy access. I keep printouts filed, for taking-along copies. I have an Orthostatic Tremor research file loaded on my iPad and I have printouts of the most valid current ones in a folder for myself and the many doctors who have never heard of OT.
I have all my information and thoughts fairly well gathered by the time I enter into that room with the doctor I feel competent and know what I will say and ask.
On my Mayo neurological appointments, I gave my list to my husband, asking him to track while I spoke, so he could remind me if I left anything out. On my 1st Neurological evaluation, the Movement Disorder Neurologist took my printout and had it transcribed to my records at Mayo.
I am concerned for people who lack confidence/the more elderly with less mental competency to advocate for themselves – bring someone with you.
I bring my husband along and I know for a fact that my husband’s presence changes the dynamics for me as a woman. Not only to help hear and convey support but there brings about a higher accountability in the room for you when you bring someone with you. I know it is sad to note these things but there is validity to the advocating process of not being pushed aside repeatedly when chronic illness is in pursuit of your normal life or the closest it can be to normal.
I don’t want to paint all doctors poorly in this area because many understand the urgency when we advocate for ourselves just as they would for a loved one of their own.
A PCP (primary care physician) is limited to the most common health care elements of their medical field. Specialists have become essential, providing care outside what your family practitioner has limited knowledge, recognizing this is also part of advocating. A good PCP will know when to refer you to a specialist, although I have had to advocate and ask for a referral. It’s important to research specialists to have an informed opinion and influence your PCP in the direction you want to go with a specific referral.
Sometimes health care facilities ask their physicians to support towards clientele of newly employed fellow specialized physicians, this may not always work out for your best health care.
I once was in a position to decline one specialist within the same health care facility, asking for a specific other (gastroenterologist). I was informed they did not prefer for me to change. I kindly told the lady on the phone, “I understand you are doing your job in telling me that they do not prefer…..but, I know if you were personally in my shoes and you had a preference, you would do as I am, so I am telling you what matters is what I prefer”.
I had an experience with the previous gastroenterologist in a medical setting indicating a list of logistical reasons to change.
They told me I could not do this change over the phone, that I had to come in and fill out a form to transfer. I did and when the form ask for my reasoning I did not inform them of the bad experience. I did state that I wanted the appointment with the gastroenterologist that I was originally referred to by my referring physician (Whom I had great confidence in his guidance in his original referral).
I did not inform them of my skeptical experience because I did not want it put into the record, as being a critical patient.
This was my experience with the one they placed me with for a “sooner appointment.”:
He entered my curtained cubicle where I was scheduled for an out patient procedure he had ordered and scheduled and ask me what I was there for, what was my problem? I had already been through one outpatient procedure that he had ordered, his assistants processed that one and had established that I had an allergy to nickel, the information needed because they were going to insert a mechanism through my nose into my stomach. It was necessary to know not to use the one containing nickel, his assistant entered and informed him of this. It was obvious he had not reviewed my records before entering. He asked who ordered this procedure? I said you ordered it, just like you ordered the last one. As he began looking on my records with the computer beside me, I watched with my diminishing confidence, knowing he did no pre-prep in studying my past tests (2 of them) and why I was referred to him. We can contribute all the excuses for this situation; he was in a hurry, human error, he was confirming my symptoms, but it was all very obvious that he indicated a possible habit of patient neglect.
We as patients invest in good care, we deserve it and we should expect it especially in the medical field. Avoiding situations such as the above requires being proactive. Advocating means doing our research and standing firm with kindness.

Some of these diagnostic journeys can take years.
My Sjogren’s diagnosis which was 14 years ago, at the time was estimated to take 7-8 years to be diagnosed. I was one of the fortunate ones even though I did not present with the classic SJS symptoms; dry eyes and dry mouth. I had chronic swollen tender neck lymph nodes for many months with extreme fatigue when my PCP ordered an RA blood test that revealed a positive outcome. He referred me to a rheumatologist, who processed me through the necessary labs. I was diagnosed in a record time of about 5 months. Though the experience with that rheumatologist was a lesson for me in how a patient should respectfully be informed. I received a letter in the mail telling me I tested strongly positive for SSA, SSB, and ANA, complete with the numerical values (an autoimmune lab test). This letter never even had the word Sjogren’s on it. I called the office for clarification, they said the nurse would call me.
There seems to be a serious problem with most medical offices in the area of actually having ‘call back integrity’, when they say, “Someone will call you.” This problem has caused me to say, “How good is your office at calling patients back when you say you will?”. (Advocating for responsible callbacks) 😉 I did eventually get a nurse on the phone, although not without my pursuit. She said you have Sjogren’s. I did not have a clue what Sjogren’s was.

I call this a medical fail when a patient has to call about an unknown-to-them-auto immune diagnosis. We need explanations. We need information. We spend for insurance, we spend for labs, we spend for office visits hoping to be heard and respectfully informed. In the medical world, if you read this, I am advocating for patient respect and accountability, which you are paid well for.

I have the very best physicians on my health care team currently and I intend to always keep it that way; being an advocate for good health care is a win for everyone it’s a healthy reciprocal of respect and balance.

I am coming now from a place in writing and expressing this whole blog series as I have been newly diagnosed with Orthostatic Tremor. I have read so many stories of patients in the OT support groups globally, who were shunned and set aside for many years with this very rare neurological disorder. Primary care physicians have absolutely no knowledge of OT. My health care team had never heard of it and I understand that fact. Though it left me feeling a bit lost in my weakness of standing leg tremors, feeling vulnerable and unstable with no answers. Many neurologists seem to have minimal awareness of OT. There is a shortage of movement disorder neurologist, who have limited awareness because of limited resources of research that delivers minimal treatment options. This all brings with it what seems to be a weird stigma of isolation for OT patients. Orthostatic Tremor is scarcely mentioned within major medical facilities, therefore it is understandable why minor medical facilities do not know of Orthostatic Tremor. Even within Neurological Movement Disorder Tremor sites of medical research study, information is minimal.

I admire that one clinical practitioner put it like this – Look for a doctor who has clinical curiosity. That statement puts such validation in listening to the patient. I hope for future physicians and researchers of this Orthostatic Tremor neurological disorder to possess clinical curiosity. Lean in with interest, as OT may not be as rare as they think. We are under-diagnosed due to a lack awareness. I am ADVOCATING for Orthostatic Tremor AWARENESS.

2) Navigating through the complexities of your insurance.

Advocating with Insurance obstacles – Yeah! That too.
Insurance seems to be orchestrated with complexities.

Sometimes you need pre-authorization for treatment from your insurance for out-of-network permission to get better health care. The ball won’t roll without it. I learned that it takes relentless pursuit from the already exhausted patient.
Appeal. Appeal. Appeal. And do a fast appeal if necessary.
My case manager was an incredible asset. She checked on me and responded to my messages, returned my calls, and came alongside me every step of the way. It was not easy, as I was coming out of the network from my Arkansas area to Mayo of Rochester. When she said we will expedite this pre-authorization. I thought; I like that word it went well with expedient. I told my PCP I needed expediency to help get a referral going. My case manager was an angel. I believe she was a blessing from God in the middle of some serious infirmities. My leg tremors seemed to be progressing and I felt weaker every day. It was scary, as I could not stand still past 1-2 minutes. So expedient was my new word.

I will expand on this when I tell of – The February 2021 health crisis with Orthostatic Tremor, my story in my next blog (3) of this series.

Be heard. Respect and be respected. Do not settle on being set aside, kindly advocate.

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.

Blog 2)

To move from blog to blog in this series you will find towards the bottom of each blog, just above the calender, you can navigate from blog to blog.

Kim of: http://happytrails2u.blog


Blog Series for Orthostatic Tremor Awareness

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.

Use the share button.

Blog 1) Introduction to Orthostatic Tremor for Awareness

(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.

My words;
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


Blog 7)

Blog 8)

Blog 9)

Blogs Coming

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.

Use the share button.