How is everyone?

This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

admin
Site Admin
Posts: 548
Joined: Fri Jan 16, 2004 5:25 pm

Re: How is everyone?

Post by admin »

>Just heard from Dr at University of Florida

Glad to hear that it is progressing. The amount of paperwork, approvals, equipment etc must be a daunting task for researchers (for anybody). I'm sure that the researchers would rather move ahead and get their work done, but that's not possible. So, delays are to be expected until every piece is in place.
gloria
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Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Everyday of my OT life I think of all of you who are sharing this same neurological disorder that has changed us from living a normal day. My gathering thoughts and information of how OT changes our lives is a patterned one of OT thanks to the input from many with the continuing reporting and inquiries on this Forum. OT is progressive with time as our standing time lessens. Please think of things you have had to adjust as OT takes more of your time trying do the chores of living thru a day! This sharing, comparing and ways of managing these cycles of changes can help each other..... Thanks Gloria
irish4411
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Joined: Wed Jul 30, 2008 10:46 am
Location: Cape May, NJ
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Re: How is everyone?

Post by irish4411 »

Hi, it's been awhile since I posted.

I have now moved from Las Vegas to Cape May, NJ. Don't know why but it seems my symptoms have really become more difficult than ever.

I will be looking for a neurologist within a reasonable distance from my area. Any suggestions?
gloria
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Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Welcome back to NJ Irish: Moving is a little stressful in it's self and it only takes a little to off set those of us that have OT however OT is progressive too so maybe that is what you are feeling. I spoke to my sister-in-law who lives in Cape May and there are no medical resourses available there but suggested that you look for some in Philidelpha, PA that is only a little over on hour from Cape May and call some of the larger medical facillities there and ask them about neurological departments and neurologists ....Gloria, here in NJ too !
irish4411
Posts: 22
Joined: Wed Jul 30, 2008 10:46 am
Location: Cape May, NJ
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Re: How is everyone?

Post by irish4411 »

Thanks Gloria for the input.

My daughter used to work for the University of Penn. I see there are a few neurologists that specialize in movement disorders. I think I will wait util the fall and give one of them a try.

You are right about the progression of symptoms, even a trip to the grocery store is my limit for the day.
Looking forward to some cooler weather, walking on the beach would be nice. I find I can walk fast like most of us but not for very long. And of course standing is not an option which is why I'm reluctant to walk around my new neighborhood. it's not that I'm not friendly, I just dread the idea of someone stopping me to chat. I just don't want to go through a long explanation of my condition.

Thanks for checking out the doctor situation for me.
Frankie
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Location: Cross Plains, Tn
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Re: How is everyone?

Post by Frankie »

Hi everyone, Frankie here
It makes me excited to know there are friends out there that I can talk with & learn more about Orthostatic Tremors. I was just diagnosed on Oct. 16, 2016. I was hospitalized in April & May with a nervous breakdown. They administered some heavy duty drugs. Everyone noticed some shaking in my legs when I got home, but we just laid it to the medications. I refused to take the meds & whined myself off of them. The shaking became very visible to everyone after a short period of time. I have an awesome doctor who immediately sent me to a neurologist. She in turn, diagnosed me first thing after examining me, with Orthostatic Tremors. I was already taking Ropinirole for my restless leg syndrome, which I have suffered with for many years. The Neurologist just upped my dosage, saying she felt the Clonazapam was not good for me @ my age of 69.
I have been reading a lot about the tremors, since I was diagnosed & have many questions that only others suffering with this disorder can give me insight into. I read on the forum that Mike is now in a wheelchair & I'd like to know just how long he suffered with the tremors before he had to resort to a wheelchair? This scares me, as I live alone & would definitely have to move if that happened to me. :cry: I already can only stand for a few minutes before the tremors start. Right now I find it embarrassing & want to find a place to sit.
Frankie in Cross Plains, Tn
MikeS
Posts: 110
Joined: Wed Mar 19, 2008 2:51 pm
Location: Marbella Spain

Re: How is everyone?

Post by MikeS »

Hi Everyone
Hi Frankie Just to let you know Im not actually in a wheelchair all the time I just use it to go shopping as it allows me time to sit and look at stuff .In fact I have also just purchased a mobilty scooter that is even better because it doesnt make my arms ache as well as my legs ,Ive had OT for best part of 20 yrs now I still walk 2 or 3 km every day and find that keeps my legs stronger I do not tale any meds for OT .At home I have stools with wheells on in the bathroom and kitchen and Gloria uses a stroller with a seat on .Dont get embarrased you will find on here some little cards that you can print out carry them with you at all time and just show them whenever there isnt anywhere easily to sit and if you are in a store ask for a chair They will get you one . Hope that helps .
Ill give a longer update soon
Keep Smilimg
Mike
:)
Frankie
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Joined: Wed Oct 19, 2016 1:31 pm
Location: Cross Plains, Tn
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Re: How is everyone?

Post by Frankie »

Thanks Mike for your reply. I do fear having to use a wheelchair & am pleased to know that I probably have a while before that happens. Everyone thinks my meds should already be working, I tell them they're not a miracle drug.
When I stand for any length of time, I start bouncing like a ping pong ball. Is this unusual? Have you heard of others that have experienced this?
My kitchen is so small, that there's no way to use a stool :cry:
Where do I find the cards you mentioned, that I can print?

Take care
Frankie :)
admin
Site Admin
Posts: 548
Joined: Fri Jan 16, 2004 5:25 pm

Re: How is everyone?

Post by admin »

Hi Frankie

Below is a link to find more information about the OT cards, different sizes, how to download & print, different languages etc:

https://www.orthostatictremor.org/ot-travel-card.html

Image
gloria
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Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Hello Frankie: I'm happy you have found us and hope we can be of help and understanding. I have a few questions that I'm trying to put in the right place to understand the on going sequence of a few things. You mentioned you have had restless leg syndrome of shaky legs for many years. When did you first feel the symptoms of OT too, before or after you were in the hospital? Did you have an EMG when you were diagnosed with OT ? All the best, Gloria
Nin
Posts: 36
Joined: Fri May 03, 2013 12:09 pm
Location: Milwaukee, Wisconsin

Re: How is everyone?

Post by Nin »

Hi Frankie - I'm also 69 an take a small dose Clonazapam. I find it helps me a lot. Don't be afraid to try it if your current drugs don't work. Just don't go up too fast as it's addicting and hard to come off of if you've been on it for a long time.
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Hi! Frankie: In your introductory to the site you said that you were hospitalized with a" nervous breakdown". I would guess that you were suffering with a lot of "stress" in your life. We have had other OT people who feel the stress in their lives was possibly the cause of their OT. However maybe stress just helps to exacerbate the onset of the real cause of OT. We will not know the answer until there is more research of this OT Movement Disorder in our lives ???????????
All the best ,Gloria
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Hoping all our friends in New Zealand are safe from the storm.

Take care and wishing you all the best,

Gloria, Beth & Jeff
Frankie
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Joined: Wed Oct 19, 2016 1:31 pm
Location: Cross Plains, Tn
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Re: How is everyone?

Post by Frankie »

Thanks Gloria for responding to my post. I know I didn't have my tremors until I was hospitalized & they had me on some pretty strong meds. :? When I came home from the hospital, is when me & everyone else started noticing the tremors. I no longer take any of those meds, but the tremors are still there. I go bag to the Neurologist again on the 17th. I'm going to ask her all about the meds & why the tremors only started after I came home. There has to be a link there somewhere. :wink:

Take care & God bless
Frankie
Frankie
Posts: 11
Joined: Wed Oct 19, 2016 1:31 pm
Location: Cross Plains, Tn
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Re: How is everyone?

Post by Frankie »

Frankie wrote:Thanks Gloria for responding to my post. I know I didn't have my tremors until I was hospitalized & they had me on some pretty strong meds. :? When I came home from the hospital, is when me & everyone else started noticing the tremors. I no longer take any of those meds, but the tremors are still there. I go bag to the Neurologist again on the 17th. I'm going to ask her all about the meds & why the tremors only started after I came home. There has to be a link there somewhere. :wink:

Take care & God bless
Frankie
PS. I forgot to mention, that yes I was under a lot of stress is why I had my nervous breakdown & had to be hospitalized. :oops:
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