Orthostatic Tremor & My Blog Posts

Posted by heariam @heariam, Aug 25, 2021

Orthostatic Tremor Awareness month of September

I am Kim, diagnosed at Mayo of Rochester this past May 2021 with Orthostatic Tremor

Most PCP and health care providers have never heard of OT - let’s change that fact. This is a worthy fight. Please feel free to share this blog series of September with all your health care team, loved ones and friends - let’s lead out with AWARENESS

To define it by its classic symptoms - when an OT patient stands their legs begin to tremor, causing feelings of instability only when standing still. No tremor when sitting, or walking at a pace with momentum. Walking slowly in a small area or stalling with shopping is difficult. Standing at a line waiting causes us to be anxious, shifting our weight back and forth rhythmic helps push the tremor into control, or stepping leg to leg, 5-10 minutes in limit for patients with a moderate case, (no time of standing duration for many as we progress in severity). Deep breathing helps with the anxieties in a public settings of standing in lines or a slow shopping pace of difficulty. Many use walkers with seats. Shopping carts or anything to hold our weight helps.
It has researched as a progressive neurological is effecting many younger people as well as the elders of 60 and over.
We need to be heard.

In short - we can’t stand or we are very limited in standing for any length of time. It causes a very anxious feelings in public settings and we are at an absolute loss for a logical way to express for understanding.

September being Orthostatic Tremor awareness month.
I am starting early at joining the charge for continued research and awareness, using my blog site with the intent to provide encouragement, support and information - inviting anyone who wishes to share these blogs to help.

This is the 1st blog in a very informative series of 9 blogs

Hoping to be able to share with others who feel the despair of so little, by way of support and awareness with my 9 series blog as I publish it.
September is Orthostatic Tremor awareness month.

Blog 1) Orthostatic Tremor Awareness
https://happytrails2u.blog/2021/08/20/orthostatic-tremor-awareness/

Blog 2) Orthostatic Tremor Essentials of Advocating
https://happytrails2u.blog/2021/08/23/blog-2-orthostatic-tremor-essentials-of-advocating/

Blog 3) My Story of Orthostatic Tremor
https://happytrails2u.blog/2021/08/28/3-my-story-orthostatic-tremor/

Blog 4) Inform Your Healthcare Team - Orthostatic Tremor Awareness Month
https://happytrails2u.blog/2021/09/01/blog-4-inform-your-health-care-team-orthostatic-tremor-awareness/

Blog 5) Managing mentally – Orthostatic Tremor
https://happytrails2u.blog/2021/09/02/orthostatic-tremor-managing-mentally/

Blog 6) Managing and navigating physically with Orthostatic Tremor
http://happytrails2u.blog/2021/09/14/6-managing-and-navigating-physically-with-orthostatic-tremor/

Blog 7) Helping your family members and loved ones understand Orthostatic Tremor.
https://happytrails2u.blog/2021/09/20/7-helping-your-family-members-and-loved-ones-understand-orthostatic-tremor/

Blog 8) Relevant Research and Resources on Orthostatic Tremor
https://happytrails2u.blog/2021/09/23/8-relevant-research-and-resources-on-orthostatic-tremor/

9) Orthostatic Tremor Encouragements and strength in Faith.
https://happytrails2u.blog/2021/09/24/9-orthostatic-tremor-and-a-walk-in-faith/

More to follow...

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

helenstamas | @helenstamas | Aug 26, 2021

I have Orthostatic Tremor. It began several years ago. I do not know anyone with it. To be able to share notes with someone who has it would be so helpful.

heariam | @heariam | Aug 28, 2021

My Orthostatic Tremor story is overwhelming for me - to write it and reread it both. It felt relentless when it was happening and relentless in writing it out.
I pray for it to be an example for awareness and research.
I hope for it to be guiding path to all those who find themselves on the path of diagnostic direction.
It is LONG and DETAILED. Of all my bloggings in this series it has been the hardest to travel through and I feel carries the most weight of responsibility for awareness.
I challenge you all to recall and document.
Our stories are valid.

Please feel free to share any and all, as I keep on task with this series of 9 blogs honoring Orthostatic Awareness month of September.

https://happytrails2u.blog/2021/08/28/3-my-story-orthostatic-tremor/

helenstamas | @helenstamas | Aug 29, 2021

Please tell me if you have any medicine that helps you. I do strong exercises every day, hoping that is helping me.

heariam | @heariam | Sep 1, 2021

Below is the 4th in my blog series bringing AWARENESS to Orthostatic Tremor honoring - September Orthostatic Tremor awareness month

Informing our Health Care Team of Orthostatic Tremor in the evidence of many health care providers having no knowledge of OT.
Providing them research and web sites of advocacy explaining for clarity and understanding. I sent my personal documentation to my PCP, Endocrinologist, Rheumatologist and Nurse Practitioner. They all expressed gratitude. They ALL had never heard of Orthostatic Tremor.
Advocate.

https://happytrails2u.blog/2021/09/01/blog-4-inform-your-health-care-team-orthostatic-tremor-awareness/

heariam | @heariam | Sep 1, 2021

In reply to @helenstamas "Please tell me if you have any medicine that helps you. I do strong exercises every..." + (show)

I take 0.5 Clonazepam X 3 daily and it has helped, it makes most people drowsy. It has helped me stand longer. My leg tremors set in with 1-2 minutes before. I still am limited, I use a rolling kitchen stool. Lean on carts. I do all task sitting down. I carry a compact tripod fold up stool with a shoulder strap.
Although I have an exercise routine with 5lbs hand weights and a recumbent stationary bike, I have not had strength lately to exercise routinely. I do on days I can.