Blog 5) Orthostatic Tremor – Managing Mentally

Blog 5) Managing mentally – Orthostatic Tremor

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I so appreciate those who have formed groups of support.

And here is a very helpful site;

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

“After her diagnosis in 2000, Gloria Nelson MacWright created a website called http://www.orthostatictremor.org to see if there was anyone else out there. She began hearing from others worldwide, and now over 1,100 people have registered on the site to create the Orthostatic Tremor Community.” The above is a statement from Movement Disorder Neurologist, Diego Torres-Russotto, who is Director of the Nebraska Medicine Movement Disorders Clinic and has done much on behalf of Orthostatic Tremor.

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

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

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

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

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

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

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Blog 5)

https://happytrails2u.blog/2021/09/02/orthostatic-tremor-managing-mentally/

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

Kim of: http://happytrails2u.blog

Blog Series for Orthostatic Tremor Awareness

Blog 1)

https://happytrails2u.blog/2021/08/20/orthostatic-tremor-awareness/