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.)
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.
Below is a great site for an explanation, as it is very difficult to express for understanding.
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.
The google search of symptoms – “standing leg tremors”, they cease when I walk, they cease when I sit down – Orthostatic Tremor was where google landed me. I am an advocate of patients researching for themselves.
When the dust had settled after the 1st 2 weeks of my February medical crisis this year (2021), two ER visits and multiple doctor’s appointments with all the diagnostic tests – standing leg tremors was what was apparent. I believe my burning spinal pain at the end of every day was my body physically fighting for balance – I may be wrong, although with my present status on medication that spinal burning back pain has gone and I take note of that with great thankfulness. I think it’s a study to consider.
When all this started;
I became immediately aware that most physicians never encounter Orthostatic Tremors. I was denied by the only Movement disorder Neurologist in our area as he was overbooked.
I pursued a referral from my PCP to assist my acceptance at Mayo.
I had read the most recent research that came from Mayo of Rochester, MN.
I faxed a personal letter to the main researcher of that study when I sent in the referral.
I fought insurance for out-of-network expedited pre-authorization.
I was relentlessly advocating for a solid diagnosis and direction.
In all this I felt exhaustion, explaining symptoms over and over with the fear of being a misunderstood patient and knowing I was dealing with leg tremors that were persistent, burning spinal pain every evening that seemed to correlate sleepless nights, and the inability to stand longer than 2 minutes.
I was processing for myself an understanding while feeling I might be trapped with the inability to pursue relief. And also knowing I was entering a lifelong new struggle in simply standing.
I found a global support group out of Australia, where others have had OT for many years and provide great support, understanding, and encouragement. I have found ways to adapt, such as; I use a rolling stool in my kitchen. I sit while showering, I sit while brushing my teeth. I lean on counters. I move my weight from foot to foot; this resets the leg tremors.
Slow walking as in shopping, causes distress and shifting from foot to foot only works for about 15 minutes before I can feel the leg tremors catching up and I become weak and have to sit down, feeling unstable.
Every evening around 8 pm leg tremors advance to immediately upon standing and climb upward.
I stress once again. I am writing this to all my caregivers for their understandings. And in support of future OT patients.
Mornings – sleep is recovery for me, I wake feeling normal.
The Clonazepam has taken the edge off of the tremors.
Leg tremors advance as the day passes, evenings can be bad if I overdo it.
My burning spine was always in the evenings and I believe it had to do with holding balance causing fatigue at the end of each day. But with the Clonazepam and increased dose of Gabapentin, there has been a bit of relief.
When I was at Mayo for my final appointment, I proved to have great balance, as I informed them that I do have a strong base of balance for women of 65 years, having road motorcycles since the age of nine and roller skate backwards as well as foreword….I laugh to myself at my re-telling these skills…..but hey I believe it is to my advantage. Many people with OT have balance issues. I am preparing mentally for that progression.
I am fighting with exercise on my Schwinn 270 recumbent stationary bike around 20-30 minutes per day, 15 minutes with moderate resistance and 10-15 lazy resistance equating to around 4 miles and also with 5lbs hand weights, 9 different moves, 20 reps each. When I am off with fatigue and weaker, I don’t do my exercises. I am finding those days more often than I like.
I am sleeping well with the Clonazepam. Sleep seems to be very important to this battle. I am feeling closer to normal, though the tremors are present, I now have a bit longer standing time. I am aware this is a drug that reduces effectiveness in time and needs to be stepped up. But it does have the best results with OT patients. (Primidone is the next line for OT treatment.) I felt inner tremors at bedtime, before being on Clonazepam. Those inner tremors and the nighttime burning back caused valuable sleep loss.
There are, of course, days of depression, because it is consistent and progressive.
The rareness of Orthostatic Tremor may be due to a lack of knowledge in its regard and need for AWARENESS.
(Currently 08/31/21) I am on 2-3 times daily 0.5mg Clonazepam, – this document was sent to my care team this past 05/21. My burning back has returned, though not as profoundly. The tremors are better on most days, I have around 5 minutes of standing still time, though I feel uneasy, I lean, prop and shift back and forth or sit down. At the same time, I feel a bit of progression with balance issues and a couple of hard falls. Some bad days, but many good days too. I am coping)
Please feel free to share this blog and also encourage your friends, loved ones, and your health care team to share.
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Kim of: http://happytrails2u.blog
Blog Series for Orthostatic Tremor Awareness
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AWARENESS of Orthostatic Tremor is the goal.
Attention for research purposes is the BONUS.
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