Blog 3) My story – 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.)

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.

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.

Please feel free to share this blog and also encourage your friends, loved ones, and your health care team to share.

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Blog 3)

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

Kim of:

Blog Series for Orthostatic Tremor Awareness

Blog 1)

Blog 2)

Blog 3)

Blog 4)

Blog 5)

Blog 6)

Blog 7)

Blog 8)

Blog 9)

Please feel free to reply, your replies are valued and appreciated.
Be kind and helpful in your replies.

AWARENESS of Orthostatic Tremor is the goal.
Attention for research purposes is the BONUS.

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Blog 2) Orthostatic Tremor – Essentials of Advocating

(Orthostatic Tremor is a rare neurological disorder of the cerebellum, causing the inability to stand without leg tremors, feelings of instability, and imbalance with gait freezing, tremors cease when walking, sitting, or laying down.)

Blog 2) Advocating

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

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

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

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

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

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

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

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

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

2) Navigating through the complexities of your insurance.

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

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

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

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

Please feel free to share this blog and also encourage your friends, loved ones and your health care team to share.

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Blog 2)

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

Kim of:

Blog Series for Orthostatic Tremor Awareness

Please feel free to reply, your replies are valued and appreciated.
Be kind and helpful in your replies.

AWARENESS of Orthostatic Tremor is the goal.
Attention for research purposes is the BONUS.

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Blog 1) Introduction to Orthostatic Tremor for Awareness

(Orthostatic Tremor is a neurological disorder of the cerebellum, causing the inability to stand without leg tremors, feelings of instability, and imbalance with gait freezing, tremors cease when walking, sitting, or laying down.)

Dedicated to my fellow Orthostatic Tremor warriors in need to be heard.

I hope for researchers, neurologists, physicians, and all health care providers to lean in for a better understanding of this very rare mostly unheard-of neurological disorder we call OT for short or POT for Primary Orthostatic Tremor.

Blog #1) Introduction to Orthostatic Tremor

For understanding this is the characteristics of OT as described by (NORD)The National Organization of Rare Disorders;
The main symptom of primary orthostatic tremor is the occurrence of a rapid tremor affecting both legs while standing. A tremor is involuntary, rhythmic contractions of various muscles. Orthostatic tremor causes feelings of “vibration”, unsteadiness or imbalance in the legs. The tremor associated with primary orthostatic tremor has such high frequency that it may not visible to the naked eye but can be palpated by touching the thighs or calves, by listening to these muscles with a stethoscope, or by electromyography. The tremor is position-specific (standing) and disappears partially or completely when an affected individual walks, sits or lies down. In many cases, the tremor becomes progressively more severe and feelings of unsteadiness become more intense. Some affected individuals can stand for several minutes before the tremor begins; others can only stand momentarily. Eventually, affected individuals may experience stiffness, weakness and, in rare cases, pain in the legs. Orthostatic tremor, despite usually becoming progressively more pronounced, does not develop into other conditions or affect other systems of the body.

Some affected individuals may also have a tremor affecting the arms. In one case reported in the medical literature, overgrowth of the affected muscles (muscular hypertrophy) occurred in association with Primary Orthostatic Tremor.

My words;
In short – we can’t stand or we are very limited in standing for any length of time. It causes a very anxious feeling in public settings and we are at an absolute loss for a logical way to express for understanding. It affects elders as well as the young, but primarily elders (60s and over) This neurological disorder of Orthostatic Tremor is progressive.

The rarity is astonishing just through my observations, by way of support groups being few. If I look for support groups within my autoimmune Sjogren’s community, there is a massive amount of support groups and in those support groups, there are 1000s within each group. When an inquest post is made there can be 100 responses or so within an hour. I thought Sjogren’s was somewhat rare with an estimate of around 4 million in America. When I searched for a support group within the ranks of Orthostatic Tremor disorder, I found only a couple of groups in America of around 200 – 300 in numbers with infrequent activity. I am now active on a global one out of Australia called Primary Orthostatic Tremor that has around 900 or so in number. This includes relatives who keep up with interest in their loved ones. They are a very proactive group that bonds together with encouragement. Sharing their stories that lend great help to the newer ones like myself. These support groups, because they have members who have had Orthostatic Tremor for many years can serve with more information than most physicians who know absolutely nothing about it. My team of caregivers (PCP, endocrinologist, rheumatologist and, nurse practitioner) all of who I have great confidence in, had never heard of Orthostatic Tremor.
Within the OT support groups, some OT patients express that their neurologists have told them; in a lifetime within clinical practicing, they might only have one or two OT patients, if any at all. It takes a Movement Disorder Neurologist to have marginal knowledge given the limited resources of research and also limited treatment options.

Researchers and physicians both may benefit to enter into these support groups for observation of patients informing one another of their individual stories. They present great clues for researchers who are pursuing causes, treatment, prevention, care, and cures. Documentation of how it began, what brought it to the forefront, how each patient has progressed, responses to the limited drugs of treatment in their own words can lead to answers. Those that have had it for many years have the wisdom of management. As researchers and physicians, there is information to pass along to patients new to OT such as myself.

I know as a patient of auto immunes I have learned more from those who have journeyed for decades with a particular disorder. There are nurses within support groups who have provided more knowledge than my own very knowledgeable physician and Rheumatologist for my Sjogren’s autoimmune. I advocate for anyone with a chronic illness to find a support group.

If you have Orthostatic Tremor;
Get very invested in telling every detail to help move Orthostatic Tremor disorder to the forefront by detailing with clarity the pathway of your OT battle. I want to know more as a patient. Researchers need relevant details of information, from our journaling. Leave it to the profound knowledge of researchers to do the analyzing by our documentations. We are pieces to a puzzle. Our detailed stories have the potential to bring about answers in RESEARCH and AWARENESS.
Orthostatic Tremor is a very obscure disorder, our voices need to be profound within the support groups and in media.
Be heard. Advocate for awareness. Articulate details of your journey.

I want this blog to be beneficial to both those who share this condition and also for those who are or will be a part of OT medical research of which is minimal at this point because of its extreme rareness. The most recent being out of Mayo –

Please feel free to share this blog and also encourage your friends, loved ones, and your health care team to share.

To share this blog simply touch the FB share button or hold down on the blog URL and chose copy, to copy the link below.

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

Kim of:

Blog Series for Orthostatic Tremor Awareness

Blog 7)

Blog 8)

Blog 9)

Blogs Coming

2) Orthostatic Tremor; Essentials of Advocating
3) My story – Orthostatic Tremor
(Getting our Orthostatic Tremor stories out there. That’s the one I am sending out to medical research potentials.)
4) Send and informative letter to your health care team (because most of them have never heard of Orthostatic Tremor)
5) Managing mentally with Orthostatic Tremor
6) Managing and navigating physically with Orthostatic Tremor
7) Helping your family members and loved ones understand Orthostatic Tremor.
8) I collected all research and resources on Orthostatic Tremor along the way.
9) Orthostatic Tremor Encouragements and strength in Faith.

Please feel free to reply, your replies are valued and appreciated.
Be kind and helpful in your replies.

AWARENESS of Orthostatic Tremor is the goal.
Attention for research purposes is the BONUS.

Use the share button.


A cheesy substitute for motorcycle, but still an adventure

Checking out at IKEA while we were in San Antonio, me driving an electric buggy. (late June 2021)

Well I had not ridden since last December so…..

The legendary Dragon at deals gap near Robinsville, NC., has 318 curves in 11 miles.
We have slayed that dragon many times on our motorcycles, my buddy/love and me, I try to talk myself down from not scraping pegs on the curves and not tacking out my gears so tight –
I love riding……curves, for some odd reasoning it ignites an
aggressive fire in soul. I NEVER slay that dragon passively.

This year has certainly been our off year, with Al having rotator cuff surgery and needing lots of rehab and me trying to navigate something very rare and new to me, a neurological disorder called Orthostatic Tremors.
Though it’s been challenging, I always hold on to a faith-thinking,
It may have been God protecting us in this particular time – no riding for us both.

I have told Al – it’s been a great ride and he says – it’s not over yet ❤️

So many great memories. We laugh and groan with the aches and pains of riding fatigue.
As we have aged more and in respect to health issues our riding changed over the years with starting early in the mornings and discovering about how easy it is to ask for early check in with only around 300-400 miles a day.
In every cross country though there is at least one or two days of hard long riding, never over 750 miles though I think only once or twice.
I have declared no more temperatures below 50 degrees, though I have a heated jacket. 85 is too hot. So we have modified some as I have declined in endurance.

Many times we start out cold and then enter warm temperatures. I remember one time we were leaving the Red woods camp ground early in the cold, we were coated up in our warm gear, navigating our way to see that big tree that we could drive through; Chandelier Tree in the Humboldt Forrest of California, the traffic comes to a stop, with road work, we were rolling along and stopping where there was shade, kicking our bike stands down to shed another layer of our warm gear every time we stoped in the shade, traffic being patient with us as we prepare for warmer temperatures.
May 2020 we logged over 2000 miles to the Smokies and back, then in June around 5000 miles to Glacier park and back.

In this season of time I have no specific journey to tell about, just this little summary of memories.
There have been many prayers of protections from our loved ones and I do believe we have been protected. We have had no major break downs, accidents or mishaps, which I believe is miraculous and the power of prayer.

We did it. ❤️ and as my husband says – it ain’t over.

I believe IKEA has more than 318 curves and I showed them how a motorcyclist does it on one of their electric buggy’s. Rearranged their furniture a bit and Al was quick to catch a few mishaps from hitting the ground, over all we left the place in pretty fare condition, Al said I was a little over confident.

With the help of medication I have standing still time of about 10-15 minutes. In shopping situations when moving slow, it can set the Orthostatic Tremor off and then I feel unstable. So I have had to get past my embarrassment and pride, resolving to use the mobility chairs when they are available. Shopping carts provide support in most cases. I have a couple of tripod chairs that I can carry easily. I use a rolling stool in my kitchen.
Bracing or leaning on a counter or chair next to me while standing; any kind of support helps. All these things are a part of modifying to this new style of living. But I can….walk fast. ☺️ I have always been a fan of momentum.

I have been in contact with a lady in Australia who is in my global Orthostatic Tremor support group, she is a rider. She informed me what I already knew through the Mayo Clinic movement disorder lab, though I told them I have been shifting back and forth in showering for the past few years. Moving foot to foot can reset/pushback on the leg tremors. It works for a while in church worship with moving leg to leg.
She said it works on a motorcycle.
This lady rider has cross country ridden in many different countries and continues to ride, she is a bit younger then I – though I believe in this present stage, God has sent me many encouragements, sharing a bond with a women rider in Australia is one of the many.

I am presently preparing a blog series to bring awareness to Orthostatic Tremor patients and also those living with auto immunes and chronic illnesses, loved ones and friends for a deeper understanding. Also lessons learned in advocating and navigating insurance. I hope for researchers and physicians to lean in and listen.

I plan on sending the blog in particular that tells the details leading up to the actual standing leg tremors to all potential research medical facilities. Orthostatic Tremor is minimally researched because of it being very rare.

I have minimal writing skills. So any one finding errors, feel free to correct me. I am grammatically challenged.

Orthostatic Tremor Awareness
This is a battle worth fighting……

Please feel free to share this blog and also encourage your friends, loved ones and your health care team to share.

To share this blog simply touch the FB share button or hold down on the blog URL and chose copy, to copy the link below.

Blog 1)

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

Kim of:

Blog Series for Orthostatic Tremor Awareness

Blog 1) Introduction to Orthostatic Tremor for Awarenes

Blog 2) Orthostatic Tremor – The Esesentials of Advovcating –

Blog 3) My Orthostatic Tremor Story

Blog 4) Inform Your Health Care Team

Blog 5) Orthostatic Tremor Managing Mentally

Blogs Coming:
6) Managing and navigating physically with Orthostatic Tremor
7) Helping your family members and loved ones understand Orthostatic Tremor.
8) I collected all research and resources on Orthostatic Tremor along the way.
9) Orthostatic Tremor Encouragements and strength in Faith.
And more………

Please feel free to reply, your replies are valued and appreciated.
Be kind and helpful in your replies.

AWARENESS of Orthostatic Tremor is the goal.
Attention for research purposes is the BONUS.

Use the share button.