- Primary Orthostatic Tremor
- Interviews
Kim's interview
How did all start?
Inability to stand still past 15-20 min. in all standing still situations for several years advancing into a crisis on an occasion when I exceeded that time limit in anger and frustration while standing preparing dinner. I spiked an abnormally high BP that sent me to the ER. A few days later went to the ER again as I woke with tremors and shaking severely while standing. Those leg tremors became consistent upon standing still with an onset of 1-2 min., not when walking or sitting.
My doctors were mystified, as all test revealed nothing.
Do you already have a diagnosis? How long did it take you to get it?
If I include the years of inability to stand over 15 min in standing still situations for 5 years or so; blaming it on my Sjogren’s auto immune. Though it was this February 2021, that it became a critical situation and quickly evolved into almost immediate leg tremor’s.
I pushed exceptionally hard on my PCP to get me a referral to Mayo of Rochester, after doing my own google research, I was fairly certain of OT. My PCP had not heard of it and the most current research came from there at Mayo. I knew I would run around in circles in my area. I used the word expedient excessively. So… confused early Feb to early May diagnosed at Mayo. 4 months - auto immunes taught me to advocate well.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Sjogren’s and Hashimotos - Rheumatologist and Endocrinologist and now Movement Disorder Neurologist all are equally useful. Sjogren’s is limited by underdeveloped research. Hashimotos if well regulated is without issue, however I have a great endocrinologist who understands that some patients need T3 in addition to T4, there are very few really good endocrinologist. I have great endocrinologist and also Rhuemy. I am experiencing neurology research to be under developed. Grossly falling short. I noticed they like to use the word gross as a medical term…..so
What has been the most useful thing for you so far?
I am new. Clonazepam 0.5mg twice daily works well, I am in the preliminary months with it and I understand that I will build a resistance, as I already am, but I will hold where I am at as long as I can. My back spinal burning ceased in the first couple months, but is now burning as it does only in the evening as I stated in my OT story, I believe it is evening back fatigue from working hard supporting my balance for OT, as mornings I have recovered. I have around 5 min in standing still time presently, before leg tremors onset.
What have been your biggest difficulties?
Fatigue - it’s a hard fight. I feel very limited in energy dispersement throughout my days. By early afternoon I am depleting. I feel ill most evenings around 7:30pm with un easiness in my body feeling tremors worse at evening time and my back burns every evening, probably an issue that may be un answerable.
How has your social and family environment reacted? Have your social or family relationships changed?
I have explicitly explained it with my social element of Facebook. I am a pastor’s wife with to many people to explain it to. I posted web sites of explanation as I have collected all research and support sites into a file. Though I believe it is a very difficult thing for people to understand. Over the interim years of dealing with these un explained issues, I have felt delinquent. I had an initial fear of being a burden to my husband. Many people ask how I’m doing and some say nothing. Most people do not know how to respond. It’s disappointing as, I myself have had to pass through grief process and my husband also. Our adult daughter’s and GRANDS remain among those not speaking of it. I have been a pastors wife for 30 years and I know people need my presence and interactions in crisis. Be PRESENT for people. You may not understand, but compassion and love has healing power.
What things have you stopped doing?
Oddly I am a 65 year old MeMaw motorcyclist. Since the age of 9 and motorcycle license at 14 - I love riding. My husband and I both have bikes and have indulged in the past 15 years of many miles cross country riding. I should be happy with that. And I am. I am hoping it is not over, If I can ride my motorcycle like kitchen stool…..maybe it’s not over.
I have been on my bike a couple of times recently.
I love to roller skate. I may try.
I don’t like to go shopping at all any more. My husband has supported that area. I did show IKEA what a motorcyclist can do with their assistant electric mobile cars. Rearrange their furniture, my husband did some quick saves catching stuff. I have been reluctant to use those helps. I did use my walker some at Mayo.
What do you think about the future?
I don’t know.
God knows and I will trust in that.
I am aware there is a slow progression and I will accommodate.
I don’t like that I feel ill in the evenings.
I have busied myself with writing a 9 blog series honoring September OT awareness that covers essentials of advocating and processing with encouragements, supports and information of all available resources.
https://happytrails2u.blog/2021/08/20/orthostatic-tremor-awareness/
So far, which years have been the best years in your life? What have you done during them?
I have loved watching 8 GRANDS develop through their growing.
I have enjoying loving my buddy/Love (42 years) and have blogged many of our cross country motorcycling adventures; pacific coastal ride from AR and back close to 6000mi., our Great Lakes, Niagara Falls, Candada, Smokies tour, Glacier park from AR and back 4000mi or more, the Rockies, Santa Fe mountain ranges and many many Smokies riding trips. 15 years worth, it’s all been good with no accident, breakdowns and no speeding tickets, which we deserved.
God has protected us well in all our adventures.
What would you like to do if you didn’t have your condition?
Be PRESENT for my GRANDS with the energy needed.
Ride ALWAYS. Love my husband with greater energy.
If you had to describe your life in a sentence, what would it be?
Redeemed, fully blessed and secure for eternity in Christ my lord, savior and FATHER.
Finally, what advice would you give to a person in a similar situation?
Research all there is, knowledge is power. Advocate with firm kindness. Do not settle with being set aside, research for the best OT care possible. Be careful with the direction of your mind, a downward spiral of negative thinking can easily steer into stress and depression, and cause undo physical decline. Rolling kitchen stool, shower seat. Shoulder strap folding tripod stool. Get your chores done early in the day. Find a relaxing hobby you enjoy. Find a social community. Keep moving. Connect to a good OT support group. Be present in loving others.
