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 And very outdated (2003) in terms of current research.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.
Show you care.
Feeling loved is a healing power, mentally and physically.
Depression comes with Orthostatic Tremor.
Strife and stress is a physical agitator. I will confess; I defriended a couple of FaceBook hostiles, as I reduced stress in several areas. Turned off the news too.
I have been adjusting my life accordingly without any apologies.
We present well. It’s an invisible disorder for the most part.
I like to be upbeat – I am an optimist, but all the above applies.
I love to visit with people, but if I am standing; (in my mind) I am fighting a battle you can not see. I sport a great sense of humor and a mind full of Kim input, but my stander upper is broken.
I went to church the other day after a very hard week and many people ask, “how are you doing”? I said, “fine”. I made it through church services. But missed a couple of other later church activities – please understand. I am the pastor’s wife, so I have thoughts of – what are people thinking? My husband will say, “It does not matter what people think”. I now agree.
I am good in the 1st half of a day, my decline in energy is around 2-3 pm with major fatigue of auto immunes and Orthostatic Tremor.
We who have OT;
“We are fighting a battle you can not see.”
It concerns me when I cruise through the support groups and see those with broken hearts because their families and friends do not understand and say or imply cruel unsupportive things.
I read all the answers of support with thankfulness to those who give encouragement and wise advice. But I think, how sad that encouragements come from so far away, from people who are strangers and not from those of their surrounding lives. This angers my rebel heart that while someone is fighting a physical battle the worst of their battle comes from those who should be holding them up with love and support, joining them in their battle.
– Have printouts of information to give for written understanding.
– Share this blog site with them.
– Ask your family members to join your OT support group; within that support group, they will discern from others with OT and recognize ways to support and understand you.
– Value the ones who come along beside you. Express your appreciation.
– Let go of those who do not.
– Husband or wives, daughters and/or sons, you are the front line. Study Orthostatic Tremor, show your love with big hugs, authentic connections, and conversation to give them value.
I believe we are living in a world that has forgotten how to love one another.
It’s like we are in a loop of life with no real caring contact, eye to eye, heart to heart.
Our devices have replaced relationships – We all say that, but we don’t set them down.
We speak about love and kindness with no actual execution.
I am so sorry if you are fighting this battle alone. Stay tight with the support groups. Find community somewhere, a strong church family is the best or a community group of some kind.
For you younger OTer’s who work a job – in all this…..you have my heart.
Take printout information to your management and co-workers, ask for understanding.
You are not alone.
by Lauren Daigle’s – Hold on to Me
Please feel free to share this blog and also encourage your friends, loved ones, and your health care team to share.
To share this blog simply touch the FB share button at the bottom. Or hold down on the icon button below and chose to copy.
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
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.
9 thoughts on “Blog 7) Helping your family members and loved ones understand Orthostatic Tremor.”
Really enjoyed your post and I want to pass it on to my children , they all live in different states and l live alone but have wonderful friends and neighbors .. I can’t stand more than a second and love reading everyone comments hoping we find help.. just started primidone but at a low dose and no help at this point .. was at 50 mg and doctor today put me up to 75 , guess you have to work your way up slowly.. I do have a appt next month in Gainsville, Florida which is probably about three hours from me. The doctor I am seeing has headed Trials on orthostatic tremors .. I will let you know what I find out .. I would like to exchange phone numbers as it’s hard to put everything in writing If you agree to that..