New to the forum? post a quick introduction

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Roseann21
Posts: 1
Joined: Thu Aug 12, 2021 2:58 pm

Re: New to the forum? post a quick introduction

Post by Roseann21 »

Hello, I’m Rose and I’m from North Yorkshire in the UK. I’ve been having problems with shakiness in my legs for a long time, I can’t even tell you how long as it’s sort of crept up on me! I know it’s many months, probably years as it’s got slowly worse. I’m 63 and very active, slim, still work full time as a veterinary nurse and don’t have any other conditions that I know of although I suspect I am somewhat arthritic as I have joint pain and it runs in the family. I also get a lot of palpitations but have had a 24 hour ecg which came back normal, so maybe that’s just stress. I can’t stand still for more than about 20 seconds before I feel like my legs are going to give way from under me but I can walk a long way. However if I overdo it I do get exhausted so I have to be careful. I can manage to do everything I need to by leaning on whatever happens to be to hand! Walls, tables, my son, random strangers (only joking) but I’m divorced so don’t have a husband or partner to assist me. My son is 19 - I was a late starter - so he’s still at home at the moment and is a great help, although I really don’t feel like I need much help currently. I was diagnosed with primary orthostatic tremor a few weeks ago and my consultant actually said he doesn’t think I’ll get much worse, which goes against everything I’ve read elsewhere. He’s prescribed clonazepam which I haven’t taken because I think the effects will outweigh the potential benefits, and he told me to take it on a day I’m not doing anything, there are no such days! I’m speaking to my consultant again on the 4th of October and will have lots of questions now I’ve researched the condition more. I’m glad I’ve found this site and forum and hope others are optimistic and want to live independent lives, I’ve had to mute Facebook pages and avoid other sites which often seem to be very negative and I’m trying to come to terms with my diagnosis but remain as positive as I can. I hope this isn’t unrealistic.
DonnaJean
Posts: 6
Joined: Tue Apr 13, 2021 8:06 am
Location: Montgomery, IL

Re: New to the forum? post a quick introduction

Post by DonnaJean »

Hi Rose, it has been almost a year since I was diagnosed and I learned there is a lot of misinformation and misunderstanding with this rare disease. However, I found a neuropsychologist in North Carolina, USA who provided a ton of information in a webinar that she presented on this disease. Her name is Dr Karen Sullivan. Here is the webinar link:

https://www.icfyb.com/otwebinar/

It helped validate what was going on with me. Hope you find some help and information that is validating for you as well.

I have had to learn to manage and change my lifestyle this past year. I work full time but sit at a computer. I feel without moving all day, I get weaker. It has been difficult but I know God is with me and giving me the care and support that I need. I just signed up for a customized exercise class for 8 weeks so I can build some strength back. Exercise is challenging with the fatigue I experience, but I don’t want to stop moving so I can remain independent as I continue to age.

Thank you for joining!
Donna Jean
KimAR
Posts: 8
Joined: Tue Aug 17, 2021 11:41 pm

Hi, I am KimAR

Post by KimAR »

I am Kim,
Married 42 years, to my beloved. (I am 65 years old) We have two daughters, both married to their beloved’s, they have blessed us with 8 GRANDS. My husband is a pastor at the same church for 30 years. We live in NW AR. We are both motorcyclist and have enjoyed cross country riding with many miles together and many great adventures. I have been a life long rider and I fear I am now looking at giving up my motorcycle, this will break my heart, as it has been my freedom therapy since my young teens.
Having been recently diagnosed at Mayo Clinic of Rochester this past May 2021 with Orthostatic Tremor, I have since been compelled to use my blog to help my fellow OTer’s with encouragements and information and also generate awareness, as I began to realize my own physicians had never heard of Orthostatic Tremor.
Research is really very limited, with much of it outdated. Support groups are sparse by way of staying relevant in this battle for awareness. My goal is to give energy towards building better awareness and support.

I am just beginning a blog series of 9 blogs in honor of Orthostatic awareness month of September.

Please feel free to share these blogs, as the more they are shared the more research attraction and awareness we gain in ADVANCEMENTS.

Kim of
Blog 1)
https://happytrails2u.blog/2021/08/20/o ... awareness/

Blog 2)
https://happytrails2u.blog/2021/08/23/b ... dvocating/

Blogs to follow;
3) My story – Orthostatic Tremor
(Getting our Orthostatic Tremor stories out there. That’s the one I am sending out to medical research potentials.)
4) Send and informative letter to your health care team (because most of them have never heard of Orthostatic Tremor)
5) Managing mentally with Orthostatic Tremor
6) Managing and navigating physically with Orthostatic Tremor
7) Helping your family members and loved ones understand Orthostatic Tremor.
8) I collected all research and resources on Orthostatic Tremor along the way.
9) Orthostatic Tremor Encouragements and strength in Faith.
And more………
vickiholmes@att.net
Posts: 1
Joined: Sat Sep 25, 2021 11:01 pm

Re: New to the forum? post a quick introduction

Post by vickiholmes@att.net »

I was diagnosed Feb 2020 by Neurology ordering an EMG. My Internal medicine and Orthopedic surgeon did not know of POT. Due to the pandemic, I stayed home until recently. I am trying to discover what I can do. I joined an aerobics class in the pool. I can do most if I stay by the side of the pool for support. I still do not like shopping for fear of standing in lines. Amazon has been my best friend. I have tried a couple of meds that just made me sleep. Now I take one Clonazepam at night. Tried to get Fycompa but insurance would not cover it. I cut my hours at work and work only at home. It is difficult to explain to family and friends why I am tired or why I can’t do certain things when they see me walking. If I am waiting to register at the dr’s office or at a restaurant, I have to pace back and forth, their perception is that I am being impatient. How much of my medical history do I have to provide to strangers? My hardest thing to deal with having POT is people not understanding. I have learned that this is something I will just have to cope with and figure it out as it progresses. I do wonder how much will this progress. I am fortunate to have a husband and three daughters to help me.
Vicki
Anthonie
Posts: 1
Joined: Wed Oct 13, 2021 8:47 am

Pleased to join this community

Post by Anthonie »

Let me introduce myself:
I am a Dutch citizen (83 yrs) having lived in Canada, Switzerland, Germany and the Netherlands.
In 1996 I was diagnosed OT at which time it was minor in comparison with the gravity of today.
I am an professional engineer (mechanical and industrial engineering).
Sometimes i wonder whether my mainly sitting profession/behavior has caused a reduction of the functionality of that part of my nerves, brain and muscles that controls the standing balance. Neglected use may have caused a deterioration of these organs?
Does any other "OTer" have a similar lifestyle and thoughts?
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