The evidence of abiding faith as we yield to the manifestation of God’s Holiness within regeneration – in our belonging.
As I have meditated on each one in a personal way, I draw closer, listening, abiding indwelling – God’s very presence.
Knowing him intimately as my creator, Father; I lean in and trust.
Putting into words what each fruit means to me. I made it into poster form in my pages app, although I was unable to export it as a poster, probably due to size. So I made it into photos. I feel like a techno underachiever.
In abiding we manifest Christ.
Not abiding we either falter or we are not – the truth is revealed.
It is a struggle of two nature as Paul speaks of in Romans 7.
Galatians three challenges us to ABIDE.
Meditate and humbly receive – be STRENGTHENED from within
ABIDE.
Abide
Galatians 5:24-26 NLT [24] Those who belong to Christ Jesus have nailed the passions and desires of their sinful nature to his cross and crucified them there. [25] Since we are living by the Spirit, let us follow the Spirit’s leading in every part of our lives. [26] Let us not become conceited, or provoke one another, or be jealous of one another. …
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.
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.
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 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.
“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.”
“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”
“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.
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.
“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
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.
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 and also propranolol 10 mg twice daily, all of which are primary POT-supporting medications. 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)
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.
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.
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.
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.
(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.
“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.
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.
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.
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)
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(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.)
Mission statement;
“Leaning toward the relevancy of articulate details in each Individual’s experience preceding into Orthostatic Tremor, and relevant symptomatic details of endurance lending support towards further research and awareness to health care facilities and medical communities of un-awareness”
First, by way of a personal introduction;
For those reading this who do not live in my circle of life; I am a 65-year-old female (born in 1955), very blessed in a marriage of 42 years (1979), and I have 2 daughters who are blessed in marriage and have gifted us with 8 GRANDS. I am a pastor’s wife of the same church for 30 years (1991). My husband and I have been cross-country motorcyclists for the past 15 years, sharing our empty nest adventures. I have ridden all my life (since the age of 9 years old and got my street motorcycle license when I was 14). Although, I did not ride in my very blessed mothering years. Riding has been my, therapy, escape, freedom, adventure, and pleasure all my life and into my cross-country journeys with my beloved buddy/love. I started this blog site to log our journeys. My husband and I usually put 2500-3000 on our shorter cross country adventures and 5000 – 6000 miles on longer journeys. And also we have the pleasure of riding together throughout our beautiful Ozarks. Motorcycling is something I do not want an Orthostatic Tremor diagnosis to take from me. I am hoping the leg to leg resetting will help when stopping in traffic, or use my kickstand when stopped in standing still traffic. I will find a way. And if I don’t – it’s all good.
Orthostatic Tremor is a rare movement disorder characterized by a rapid tremor in the legs that occurs when standing. The tremor disappears partially or completely when an affected person is walking or sitting. Individuals with Orthostatic Tremor experience feelings of unsteadiness or imbalance.
Walking slowly in a small area or stalling within a shopping scenario is difficult. Standing in a line waiting, and standing conversations cause us to become anxious. Shifting our weight back and forth or stepping leg to leg helps push the tremor into control, as this action resets the leg tremors. Deep breathing helps with the anxieties in a public setting of standing in lines or a slow shopping pace, although after around 10-15 minutes, we simply have to sit down. Pushing past tolerance levels causes major fatigue and discomfort. Many with OT have much less tolerance in all the above described, using assistance devices; canes, walkers with a seat, rolling kitchen stool, and wheelchairs. We are all at various progressive levels. Explaining all this is not a possibility for people around us to understand.
Many chronic illnesses and disabilities are invisible to those around us.
From my own experience, I know that there is much to learn from patients themselves. Tests can verify and bring conclusions, but patients and their story of experiences, in chronological order leading up to OT hold pieces to this puzzling rare disorder. Physicians and researchers who understand this are advocates for our cause and interested in the details of each Orthostatic Tremor patient, I would assume. I would hope.
I have sensed a bit of stigma in OT research, as an outsider and patient, I have seen a lack of acknowledgment within renowned health facilities even though it is easy to diagnose with a stethoscope and even more profoundly with standing EMG testing. My guess is, this happens because of the minimal treatment options in medication and also the DBS procedure having minimal success. There are no answers to the cause, there is no cure or solid classifications as of yet, and of course, because it is profoundly rare.
Orthostatic Tremor affects mobility and is progressive. This should bring about much concern as it not only affects the elderly, such as myself but many younger people, also. Research must continue.
My Orthostatic Tremor journey. I have debated telling the long story of it or the short condensed, which may be more compelling for a reader to invest time in. I have been stalled out on this internal debate for a few weeks. I know it will be hard to invest your time in the long story, though I lean toward the relevancy of articulate detail having important factors in research. We all know when we visit a specialist or any physician, they all have minimal time for the details. I believe that is a factor regarding to Orthostatic Tremor being suppressed from an expedient diagnosis, along with the fact that the majority of our care providers in our health fields…..have NEVER heard of OT. My major goal is to change that FACT into an acute AWARENESS
So here we go with the long details of it.
Because I have experienced years of fatigue that comes with Sjogren’s autoimmune, much of what I experienced in the past few years, I blame either on my existing Hashimotos or Sjogren’s autoimmune diseases. Thinking maybe I needed to adjust thyroid medications or maybe it was a Sjogren’s flare. Or maybe a mix of both.
On multiple occasions even as far back as five years ago, I would be with my husband in a hospital room visiting with families from our church, standing still for a while, I would begin to feel weak with slight nausea. Breaking a bit of a sweat, needing to sit, or just melt to the floor. I was embarrassed and also trying to stay focused on the discussion and engaged socially. I left the room to find a seat on one occasion. Sitting revived me. I expressed this to my husband and just passed it off to very familiar autoimmune fatigue. In more recent years, when showering for over 15 minutes or so, especially in the mornings, I would become so weak a couple of times I curled up in the bottom of the shower. Even though we have a built-in seat, I felt too weak to sit. I began to hurry my showers and also sit on the built-in seat to keep away from the overwhelming feeling of exhaustion. I adjusted the temperature to be not so hot. I would rest for a while after a shower. I brainstormed to try to figure it out. After having cut my husband’s hair for 42 years, I had to sit down after about 10-15 minutes, rest, and then finish. I would help my husband (Pastor) cook his famous breakfast at church on Wednesday evenings and helped serve. My husband who knew how weak I felt would offer for me to sit on a stool to help serve. But I refused, too embarrassed of my weaknesses. I would go home feeling overwhelmed with exhaustion. Disappointed in myself, failing at having the energy I needed to serve with my husband. Standing while doing a mammogram, I would feel sick and clammy, I ask to sit down a few minutes during it. Taking a rest helped. When shopping, walking slow, after around 30 minutes I was exhausted, with a necessity to sit down.
All those details of intolerances and weakness for standing were progressing. My limitations in the years before February 2021, I believe are relevant symptoms leading up to the standing leg tremors and my Orthostatic Tremor diagnosis, a rare neurological disorder.
Also, in the past 2-3 years, while I was having standing intolerances, every so often, in the evenings my spine would begin to feel hot; like it was on fire with a burning sensation. In the 3-4 months leading up to my February 4th, 2021 crisis, it was every evening. I used ice packs on my back to help it feel better. This burning made me feel ill with nausea, from late evening occurrences moving up into earlier evening occurrences of 6:30 pm to 10 or 11 pm and later into my nights, disturbing sleep. It was not something that bothered me throughout the day at all, just in the evenings. Those advancements led me into making an appointment with my rheumatologist because it had begun to feel intolerable. That appointment was on the 5th of February 2021.
Both of those symptoms seemed to move along together and were progressing. I had been ignoring them both and just trying to cope. I had fears in stating my symptoms to my physicians, that it may all be thought of as anxiety much like years earlier (2011) before I was diagnosed with Hashimoto’s autoimmune. I was placed on anti-depressants that did not help me. My autoimmune test for thyroid (by the time I was tested) would indicate me being 5 times off the charts. When I ask the Endocrinologist, “Is my thyroid working?” He said, “Your thyroid is dead.” That was my major lesson in advocating. A malfunctioning thyroid can be like a crazy roller coaster ride. When I was placed on thyroid replacement medication I began to feel normal, mentally and physically. Most doctors know the effects of a non functioning thyroid. Because of that experience, I am very apprehensive of having anxiety pinned to my medical record when there is a real physical condition to conclude. I was very much aware of the balance in communication to my physicians….as in, well you know – I am not a crazy person, just a desperate person. When physicians don’t know what’s going on, advocating to make sure we are not pushed aside is essential.
So….this is my February through May 2021 pivot into an Orthostatic Tremor diagnosis beginning;
Thursday, February 4th While standing too long in my kitchen doing dinner prep I became weak shaky and clammy. I felt determined to continue, feeling angry, frustrated, and sad at my weaknesses, I thought – I am not stopping till I’m through. Later that evening, sitting reclined beside my husband, relaxing, and trying to ignore my burning spine pain while watching TV I felt a strange feeling. Lightheaded, dizzy, blurred vision, and a rushed feeling in my head. I leaned forward and told my husband, “Something is not right.” We took my blood pressure. I am usually low to normal with my BP. It was 173/110. I had NEVER had high BP, I did not break into 3 digits until well into my 50s with some weight gain. This was alarming to us. A BP spike like this was something new that we were not familiar with. Do we call an ambulance? We took it again and it was 183/110. We loaded up in the car and was headed towards a nearby town, about 12 miles away, where the hospital was. We live in a smaller town near the bustling NW Arkansas. I felt like it was increasing still, with a feeling like I could pass out. We called an ambulance. It was then 207/110 and by the time we arrived at the hospital, 173/124. They did a few tests, gave me medication to bring it down and we went home.
(I believe, looking back, knowing more surrounding factors of my Orthostatic Tremor diagnosis, that pushing through earlier that evening, while standing to do kitchen prep caused my body unusual stress, along with the intense spinal pain being a contributing factor. Knowing more about OT, holding balance throughout the day my back is under the stress with balancing against standing leg tremors, maybe causing fatigue with fighting all day for balance. I have observed within the Orthostatic Tremor support groups that there are many others with back issues) I don’t believe it was something understandable medically in the ER on that evening.
Friday, February 5th I already had an appointment with my Rheumatologist. He ordered the appropriate tests since the spinal pain and using an ice pack every evening just did not seem normal.
Monday, February 8th I had a follow-up appointment with my PCP in regards to the BP spike and ER visit. I expressed to him my inability to stand for over 15 minutes and my back feeling like it’s on fire every evening around 6:30 pm. I felt the two problems were connected. He gave me an RX in case my BP spikes again.
Tuesday, February 9th I woke up in the morning when rolling over my whole body began to tremor and shudder. It felt like it generated from my spine and I broke into a sweat. I had never experienced anything like it. It lasted about 5-6 seconds. We felt it wasn’t something to ignore. My husband called the ER and told them what I had experienced and they told him to bring me to the ER. My legs were shaking as I got ready and I felt unsteady. (I would say this was the beginning, the first of my leg tremors.)
I have had essential hand tremors most of my life and I have been on medication since my early 50s to control them. (propranolol 10mg twice daily, I have also been on a regime of Gabapentin 300mg three times daily for many years for my Sjogren’s and migraine support) They did more testing and all was normal. The ER doctor advised me to reduce my propranolol to once a day. I was thinking (not out loud) – ARE YOU A DOCTOR!? I do not intend to marginalize any doctors or use names on these plubications, but it is essential to stress the use of common sense in our health care choices. In a bit of rebellion, I quit taking both doses of propranalol and the results in the few days ahead proved to be very shaky. A few months later the Movement Disorder Neurologist at Mayo Clinic informed us propranalol, is used by some surgeons for steady hands. Military snipers use it and it is illegal for use in competitive archery and billiards too. I had begun taking it when I was a dental assistant on days that I worked, as my hand tremors advanced with my age. This was under the care of my PCP. A migraine specialist increased my dosage to twice daily of 10mg Propranolol (Orthostatic Tremor and Essential hand tremor are different as various clinical research have concluded)
I would guess that the fact that I had been on propranalol and Gabapentin, both may have lent a measurable amount of support to the impeding Orthostatic Tremor. Both medications have a history with OT and are on the list for treatment. Neither showed evidence in solving my Orthostatic Tremor as it persisted. Though, perhaps without those medications, I may have presented with leg tremors much worse or maybe sooner without them.
Wednesday, February 10th I had leg tremors within standing 1-2 minutes. This had progressed over the previous week, following the spiked BP incident caused by pushing past my standing tolerance and the continued burning spinal pain of the evenings.
February 9-17th Frequently, as I rolled over in the night, I woke with shuddering from spinal tremors. I went to bed every night with an ice pack on my burning spine. I was having hands spasms when I woke to reach for my bedside water. They only lasted a few seconds. Mostly, my right hand, but also my left. Just briefly and then they would stop.
(I often wonder if the evening burning pain was spinal inflammation causing the spinal tremors and shuddering throughout my body in my movements during my sleeping hours. I also wonder if OT affects our spines more than research has revealed. A night’s rest always brought recovery, except with the standing leg tremors. Orthostatic Tremor, being rare, has minimal research, so I continue to stress the importance of details).
Thursday, February 18th I had labs tests and MRI (cervical, thoracic and lumbar) I wasn’t able to stand up long enough to register for the appointments. Thankfully, my husband was valuable support, while we are both mystified and overwhelmed.
Sunday, February 21st I applied to the Mayo Clinic online and had a phone interview the following Thursday. I was beginning to realize my physicians were all mystified. (As it turns out, it takes a strategic sequence of hurdles to get excepted into Mayo.)
Monday, February 22nd. I woke at 1:30 am with a right leg episode in the night, like an electrical current, (right leg seems to tremor more than left and this was also held evident in my Mayo EMG) I woke from a sound sleep with spinal/tremors, my right leg felt like a jolt shot down my leg and into my foot with an ache and some brief numbness. At 1 pm I met with my Endocrinologist for a routine Hashimoto’s (autoimmune thyroid) check-up. I consulted with him on current tremor issues. I showed him how long I stand stationary before leg tremors begin. (about 1-2 minutes) My endocrinologist is one I value because of his deeper medical knowledge. He examined my tremors, legs, and hands, and advised me that I needed a Movement Disorder Neurologist. I told him I was pursuing admittance to Mayo Clinic of Rochester, MN. He advocated on the pursuing of Mayo for expediency as he concurred the neurological wait in our area was too long. He recommended the only Movement Disorder Neurologist in our area and sent a referral on my behalf. I was denied, as he was not taking new patients.
Tuesday, February 23rd At an appointment with my PCP, I expressed my need for direction to a movement disorder Neurologist with referrals as advised by my Endocrinologist. My tremors off propranalol made this issue very apparent as I exhibited standing tremors and hand tremors. All testing so far revealed no help towards a diagnosis and direction. My PCP advised returning to propranalol 10mg twice daily.
I began to explore, google and research for myself.
Thursday, February 25th I had my Mayo phone interview and filled out a neurological questionnaire. (The Mayo neurological evaluation form I filled out, may not be fitting regarding Orthostatic Tremor) The status continues in all physical areas.
My Insurance case manager expedited a pre-authorization if I was to be excepted into Mayo Clinic care.
Wednesday, March 10th I had an appointment with PCP. He ordered some labs and stated it looked like my Rheumatologist covered everything thoroughly. I ask him if he had ever heard of Orthostatic Tremor. He said, “no”. I told him to look it up. At this point I had googled, “leg tremors when standing, stopping when I walk, sit or lay down”. No matter how many ways I re-formed the wording of that particular description on google…..Orthostatic Tremor was the ONLY thing to pop up. (Since I noted it’s a rarity, I thought, surely it was not that)
I collected every article of research on OT and began logging into all the support groups of Orthostatic Tremor all causing me to realize I was at a dead end within my local options for medical direction. Very few regular neurologist have knowledge of OT and movement disorders neurologists themselves, have limited research resources to pull from with minimal treatment options. I did not expand on all this to my PCP. But I did inform my PCP that day I was not going to stay here in my area and go door to door, appointment to appointment, test to test, and more testing for the next few years with what I am dealing with. I watched his overwhelmed face at my desperation for answers and told him it was expedient that he give me a referral. I handed him the name of Dr. Anhar Hassan, who had completed the most recent research on Orthostatic Tremor. And told him I wanted a referral to this movement disorder Neurologist at Mayo.
Mid-March I had moved from the couch back to bed, (my husband had followed me bed to couch and couch to bed). I had liked the couch because back-pressure gives me a bit of relief. I would press a cylinder memory foam pillow down my spine. My back continued with burning sensations every day. It was always worse in the evenings. I continued to use a towel-wrapped ice pack to distract from the intense burning sensation (below shoulder blade level to waistline). My BP spiked with the pain occasionally. I continued to wake up, as I would roll over or reposition in my sleep, to all-over body spinal tremors/shuddering. Standing leg tremors continued.
Within my research on Orthostatic Tremor, I was making some mental adjustments, slowly realizing I need to process some grief in the changes this could mean to me personally. There were days that my husband would come home to me mourning in my uncertainty. I didn’t want to lose my normal physicality. I didn’t want to be a burden on him or anyone, in the progression of OT. I was fighting insurance dead ends, doctors with dead ends, and Mayo admittance failure. I had no direction. With the length of time in those months of feeling helpless, uncertain, and ill, my mental state was beginning to fall. Expressing the details of despair revolving around this OT battle is as important as medical details for understanding. We are human and our emotions come with us. I am not complaining, I am simply verbalizing realities for anyone who processes through any dark tunnel of despair. Even in my deep faith, I can lament just as David did in the Psalms, in the very heart of the Bible, well placed in the center. We cry out. So, I include this for the understanding of our physicians, specialist, researchers, and anyone who needs to know the depression aspects are included in this writing.
I had been feeling weak in waiting for each new test appointment, results, and subsequent cycling of each appointment. I was weak with each appointment, it depleted me just to get in the building and while standing to check in my legs began to shake. Thinking my way through repeating everything over and over was overwhelming. The push for medical help was draining my body. I had lost 10lbs since it all began. I had days that I charge on at the gates toward help. And other days I had not one ounce of energy.
As I meditate on this journaling of my medical crisis, I can not help but think about people/patients who wouldn’t be able to mentally process this medical WEB. Those who do not know how to advocate and those who do not have a husband or loved one for support. That is heartbreaking to me. People who deal with much more than OT. We need to be heard….our stories matter.
Tips and advice I pass on to you
I learned the word expedite as an insurance passage to pre-authorization and appeal, re-appeal, and when all else fails do a fast appeal. I was pursuing “out of network” medical care. A good insurance case manager is also an advocate when she understands the cause. She was my angel from God.
Letters of Referral to get to an expedient diagnosis need to be sent to the referred doctor and your Insurance company. Timing is essential.
There were failures in the sending/faxing process. When that happened, I got advised to obtain the referral letters from my PCP personally and Fax them myself.
The system fails us. It just does. Advocate calmly and relentlessly.
I called Mayo Neurology Department in the afternoon after faxing them in the morning.
I sent my PCP referral to the Mayo Neurology Clinic of Rochester, MN., and also a letter to that particular Movement Disorder Neurologist of the most recent OT research, a brief account of my tremors on standing, but not walking or sitting, I FAXED it personally to her. And then at the end of that day, I called the neurology department to make sure she got my FAXed letter……and I got my appointment. 😊
I was relentless in my pursuit of advocating. I got an appointment in mid-April for all the rule-out testing and the standard standing EMG that verifies Orthostatic Tremor. I returned for the concluding diagnosis with the Movement Disorder Neurologist who confirmed OT in mid-May. I was diagnosed with Orthostatic Tremor. Nobody wants this diagnosis but it gives me a direction. It gives me an explanation for understanding. For me and those in my surroundings of life.
I am fueled for a fight of AWARENESS, in support for my fellow OTer’s, who suffer in very intense ways. The young ones with Orthostatic Tremor, who will have a very long battle.
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(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.
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