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 ….

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 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.

Use the share button.

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

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 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.

Use the share button.

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 5) Orthostatic Tremor – Managing Mentally

Blog 5) Managing mentally – Orthostatic Tremor

(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.)

On a good day, I could brag about my coping skills.
On a bad day not so much.
If I have a string of bad days……Eeyore, I am.

There is a popular “spoon theory” that is passed along with all autoimmune regarding fatigue. I won’t give reference to it, as it is very easy to google. It’s an illustration of knowing your threshold of endurance on any given day with chronic illness. The price we pay is to much…it’s too much too recover from when we go past what limited resources a body has with chronic illness.

I think through and measure out what I can and can not do in one day. I have often said to my husband if there were a pill for fatigue relief I would take it. Fatigue itself feeds into our infirmities as a stress factor. My Rheumatologist would suggest prednisone. And I have taken it for short periods in relief of Sjogren’s autoimmune flare or to get me through a vacation motorcycle cross-country adventure. It is my medication of superpower, though I don’t want it to be a common thing.

Many doctors do not understand autoimmune fatigue. I am thankful mine do, both my Rheumatologist and Endocrinologist.
With long-term fatigue comes depression and those two buddies like to cycle together.

If I were to define the worst of my autoimmune Sjogren’s it would be fatigue. Although at this point I am guessing that Orthostatic Tremor has been on my heels chasing me down for a few years, being an intermingling antagonist causing stress and flaring my auto immunes (Sjogren’s and Hashimoto’s). Or at the very least confusing me with very strange undefined health issues. Who knows.

At church when I helped my husband do a monthly breakfast for dinner before Wednesday evenings activities. Moving around the kitchen helping was no problem, but when we stood to serve I would begin to tremor in my hands. I have had essential hand tremors most of my life. I found this embarrassing, though most people don’t notice. Then later washing the dishes standing in place, my legs ached as I had maxed out my fatigue. I would leave early, distressed and sad at my limitations. Thinking that I appeared lazy or might even be judged as not participating comparatively by those who know nothing of what I am going through.

Enduring long-term chronic auto-immune illnesses and now Orthostatic Tremor. I processed through in the early weeks of knowing I was headed down the Orthostatic Tremor path. Thinking about what a burden I could become to my husband, who consistently said, “We are a team”. And in truth, we have always been a great team together. But he carries a lot of responsibility as a pastor and I did not want to be an anchor on him.
My church family was bringing food to us, but I also thought I don’t want to be a burden to them and they could not keep it up. I went very dark for about a month in my thinking.
I was navigating those grief stages.
Depressed, not wanting to tell, express or explain. I had a desire to present with only being vibrant, never wanting to appear weak, being in my nature an optimist to my very core, happy and positive, with great enthusiastic humor……in the depth of my depression, my optimism pushed through. I am a fighter with a power of faith in God and perseverance.
Though I was battling some infirmities that I did not understand. I feel expressing these personal aspects is very important. Knowing how we are affected on a personal level is very much a part of how physicians and researchers may develop an understanding of our mental state with chronic illness.

I am thinking of all the things that help me……wanting to articulate without the normal classic positivity Cliché’s.

Sometimes I have to give myself a good shake.
Stop spinning my negative thinkings and think about good things.
It is so important how we speak to ourselves.
Keep a thankful list every day. Being grateful is fuel for contentment.
Allow expression of your negativities briefly, because suppression of much can cause depression……but do not stay there.

All this brings me to one of my favorite Bible passages;

Philippians 4:6-9 NLT
[6] Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. [7] Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus. [8] And now, dear brothers and sisters, one final thing. Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise. [9] Keep putting into practice all you learned and received from me— everything you heard from me and saw me doing. Then the God of peace will be with you..…

There is a very good book called, ‘The Phillipians 4;8 Principal’, by Tommy Newberry. Check it out. Purchase it or download it, it is a book needed in your library.

I read Psalms 23 slowly in meditative personal praying. Sometimes I read it out loud slowly in prayer/meditation consuming God’s word to work its Holiness. 23rd Psalms is for life. Living in the comfort of knowing my Father’s presence.
There is also a book called, ‘Traveling Light’, by Max Lucado, on the 23rd Psalms. Another book worthy of your library.

A long full hug on my hubby/buddy/love.
Cuddle that puppy or kitty you have. (our Elroy and Gracie)
I have a Hammock and I call it, ‘ Hammock Therapy’.
Take a warm bath with music. Try, Julie True, her music is comforting and meditative.
A good balance of doable activities, a chore or two for accomplishment’s sake.
Exercise – walking….
Meditation of calmness with deep breathing (I pray throughout my day continuously).
Honestly this task I’ve taken on; to blog out to the world about Orthostatic Tremor has been therapeutic.
Close friends, the ones who listen and understand.
My dear sweet close friends might tell you about how I hide when I’m down…….

Lean in for this one, it’s one I share above all;
When no one is around, I have a therapist who listens as I wail out in tears, speaking out loud all my hurt, pain and sorrows. I empty myself soul and when I am empty, a gentle holy presence of peace holds my brokenness in his arms…..my Jesus.

Fear not child.
You are loved and
I understand your pain.
Please KNOW this.

To all physicians –
Clinical tests, lab tests, and physical examinations are functionally essential. But you are dealing with real people and mostly this is minimized in your process of care and research. Not always, but I do believe mostly.

https://clinicalmovementdisorders.biomedcentral.com/articles/10.1186/s40734-016-0048-5
Quote from the above article;
“Conclusions
We review the clinical signs of POT (Primary Orthostatic Tremor) that may help to increase the awareness of doctors and improve the diagnosis accuracy, based on the motor symptoms and description of the everyday life disability, as reported by the patient. Non-motor symptoms (including somatic concerns, anxiety, depression, and social phobia) should be better considered in POT as they have a major impact on quality of life. Pharmacological treatments (clonazepam, gabapentin) may be helpful but have a limited effect over the years as the patients experience a worsening of their condition. On the long term follow-up, there are still unmet needs in POT, and new therapeutic avenues may be based on the pathophysiology by modulating the cerebello-thalamo-cortical network.”
And also….
“What I have learned from this patient and many others is that the impact on daily life is under-estimated, as doctors often do not realize how many activities may become restricted or impossible with POT. As illustrated by this observation, the detailed description of limitations in everyday life activities, with special attention to those while standing, corresponds to the (mainly motor) key diagnosis features [1–4] of POT (Table 1) and may help non-neurologists to be aware of the diagnosis despite its rarity.”

I believe Orthostatic Tremor is getting passed over because most physicians have never heard of it.
Some lean away in the apprehension of what they don’t know.
We need a health care team who leans in with clinical curiosity intending to care and even research it out to know.
Much of our mental well-being is in actively making sure we have physicians who are willing to take care of us and be challenged into understanding OT.
Tell them about it.
Give them printouts.
Send them the internet links.
Point them to get on the support group sites and study our stories.
Tell them you need them to understand for well-being and for any other patients with Orthostatic Tremor symptoms. We need to fight for awareness together.
Share this blog.

If you sink into a mental depression seek clinical help.
Find someone to tell – that can help you navigate to a strong mental balance.
If you are not on a support group, seek them out. Search on Facebook, the most welcoming and encouraging one I have found is called – Primary Orthostatic Tremor group.

I so appreciate those who have formed groups of support.

And here is a very helpful site;

https://www.orthostatictremor.org/phpBB3/index.php?sid=64bd2705ea403e59dc895031bbe129d2

“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.” The above is a statement from Movement Disorder Neurologist, Diego Torres-Russotto, who is Director of the Nebraska Medicine Movement Disorders Clinic and has done much on behalf of Orthostatic Tremor.

Another helpful site.
https://www.orthostatictremor.org

This is why one of the 1st directions I took was in finding an OT support group. My testimony regarding how essential a support group is;
I was diagnosed with Sjogren’s in 2007. I had never heard of it and my physician did little by way of explaining it to me. I had never even been in a situation that I needed a support group medically.
We fear what we don’t know, it’s our very nature. I was motivated in the night sitting in my living room in that fear and despair, I found a group called SJW – Sjogren’s World. That night as I posted on it about my fears and inquiries, what I found was comfort from some very compassionate women who were moderators. There was within that special group, different individuals who provided a fellowship of kindreds in a journey of Sjogren’s, with encouragements along with a couple of excellent nurses who had a history of Sjogren’s diagnosis for decades and knew more than most doctors about it and cared to share.
They had on-site all the research and helpful information. There was a neurologist from John Hopkins who was involved in researching the neurological aspects of Sjogren’s as he asked questions and studied within our group.
Find a support group, if you have not already.
Find your kindred.
I am a sjoggy, with sjoggy sisters.
And now I am an OTer.
And I will be okay.

By the way, my motorcycle is my dose of good mental health…..
And I am NOT giving up on it. (after all…I sit on it….I don’t stand on it 😊)
I proved to that Mayo Movement Disorder Neurologist that I was at the top baseline in balance, for a 65-year-old lady.
I ask him, ”so can I ride?, I’ve ridden all my life”.
In his exquisite Italian accent, he replied (BTW – it was an Italian physician who discovered OT and was the original kick-off in research) “sure, why not”, he replied.
I know there will come a time when I cannot.

I am NOT a person who might say –
best wishes, luck to you or I am sending good thoughts your way…..

I pray for peace, comfort, and strength, I want a Godly power in your life.

For we who Tremble – listen to this:
https://youtu.be/pI2sYS3ov0w

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.

Blog 5)

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 4) Inform your Health Care Team – Orthostatic Tremor Awareness

Blog 4) Send an informative letter to your health care team.
(because most of them have never heard of Orthostatic Tremor)

(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.)

I did.
And they replied with appreciation, all saying they would take the information and put it to practice in future observation. (Not in those exact words, but close enough.) They felt it relevant and interesting.

This is one of the ways you as a patient may advocate for yourself and future Orthostatic Tremor patients. I believe a good physician and all medical caregivers should have clinical curiosity. If all Orthostatic Tremor patients do this, it is another dynamic way of achieving AWARENESS.

I will publish here below my letter, as an example.
Of course, change yours accordingly for your specifications. You may kindly ask your care team members – Do you have clinical curiosity about this rare neurological disorder of Orthostatic Tremor? If so here is an informative document regarding my diagnosis.
As my caregiver, I assume you want to know.
Spur them into AWARENESS – your whole care team should know.

Parts of this letter will be repetitive of prior blog writings;

To my health care providers:

For information, I am sending the most current research on Orthostatic Tremors that came from Mayo Clinic of Rochester.
There is very little research as it is very rare.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6886496/

Below is a great site for an explanation, as it is very difficult to express for understanding.

https://tremor.org.uk/orthostatic-tremor

If I were a physician I would be interested in the details of OT because of its rarity. And I want my physicians to have an understanding for me and also in the event of possible future patients exhibiting standing leg tremors.

Before being accepted as a patient at Mayo I had already read all the resources of research and pursued the one active support group of only 900 people globally out of Australia with details of their journey in this neurological disorder.
I was diagnosed at Mayo of Rochester in May, after multiple testings from my April visit and neurologist appointments as seen in my records that you have access to.
I am thankful for this as I have become aware that a diagnosis such as this can take as long as 7 years and even more.
Thank you.
The google search of symptoms – “standing leg tremors”, they cease when I walk, they cease when I sit down – Orthostatic Tremor was where google landed me. I am an advocate of patients researching for themselves.

When the dust had settled after the 1st 2 weeks of my February medical crisis this year (2021), two ER visits and multiple doctor’s appointments with all the diagnostic tests – standing leg tremors was what was apparent. I believe my burning spinal pain at the end of every day was my body physically fighting for balance – I may be wrong, although with my present status on medication that spinal burning back pain has gone and I take note of that with great thankfulness. I think it’s a study to consider.

When all this started;
I became immediately aware that most physicians never encounter Orthostatic Tremors. I was denied by the only Movement disorder Neurologist in our area as he was overbooked.

I pursued a referral from my PCP to assist my acceptance at Mayo.
I had read the most recent research that came from Mayo of Rochester, MN.
I faxed a personal letter to the main researcher of that study when I sent in the referral.
I fought insurance for out-of-network expedited pre-authorization.
I was relentlessly advocating for a solid diagnosis and direction.

In all this I felt exhaustion, explaining symptoms over and over with the fear of being a misunderstood patient and knowing I was dealing with leg tremors that were persistent, burning spinal pain every evening that seemed to correlate sleepless nights, and the inability to stand longer than 2 minutes.
I was processing for myself an understanding while feeling I might be trapped with the inability to pursue relief. And also knowing I was entering a lifelong new struggle in simply standing.

I found a global support group out of Australia, where others have had OT for many years and provide great support, understanding, and encouragement. I have found ways to adapt, such as; I use a rolling stool in my kitchen. I sit while showering, I sit while brushing my teeth. I lean on counters. I move my weight from foot to foot; this resets the leg tremors.
Slow walking as in shopping, causes distress and shifting from foot to foot only works for about 15 minutes before I can feel the leg tremors catching up and I become weak and have to sit down, feeling unstable.
Every evening around 8 pm leg tremors advance to immediately upon standing and climb upward.
I stress once again. I am writing this to all my caregivers for their understandings. And in support of future OT patients.

Mornings – sleep is recovery for me, I wake feeling normal.
The Clonazepam has taken the edge off of the tremors.
Leg tremors advance as the day passes, evenings can be bad if I overdo it.
My burning spine was always in the evenings and I believe it had to do with holding balance causing fatigue at the end of each day. But with the Clonazepam and increased dose of Gabapentin, there has been a bit of relief.
When I was at Mayo for my final appointment, I proved to have great balance, as I informed them that I do have a strong base of balance for women of 65 years, having road motorcycles since the age of nine and roller skate backwards as well as foreword….I laugh to myself at my re-telling these skills…..but hey I believe it is to my advantage. Many people with OT have balance issues. I am preparing mentally for that progression.

I am fighting with exercise on my Schwinn 270 recumbent stationary bike around 20-30 minutes per day, 15 minutes with moderate resistance and 10-15 lazy resistance equating to around 4 miles and also with 5lbs hand weights, 9 different moves, 20 reps each. When I am off with fatigue and weaker, I don’t do my exercises. I am finding those days more often than I like.


I am sleeping well with the Clonazepam. Sleep seems to be very important to this battle. I am feeling closer to normal, though the tremors are present, I now have a bit longer standing time. I am aware this is a drug that reduces effectiveness in time and needs to be stepped up. But it does have the best results with OT patients. (Primidone is the next line for OT treatment.) I felt inner tremors at bedtime, before being on Clonazepam. Those inner tremors and the nighttime burning back caused valuable sleep loss.
There are, of course, days of depression, because it is consistent and progressive.

The rareness of Orthostatic Tremor may be due to a lack of knowledge in its regard and need for AWARENESS.

(Currently 08/31/21) I am on 2-3 times daily 0.5mg Clonazepam, – this document was sent to my care team this past 05/21. My burning back has returned, though not as profoundly. The tremors are better on most days, I have around 5 minutes of standing still time, though I feel uneasy, I lean, prop and shift back and forth or sit down. At the same time, I feel a bit of progression with balance issues and a couple of hard falls. Some bad days, but many good days too. I am coping)

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 4)

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.