New to the forum? post a quick introduction

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

Moderator: gloria

Mark
Posts: 16
Joined: Mon May 22, 2017 5:41 pm

Re: New to the forum? post a quick introduction

Post by Mark »

Hi Adrian, Sorry to hear how bad you are now. How many people have you talked to about their. OT and it's progression? How many people get away with 'mild OT' and how many don't?
Hence my stupid straw poll idea! Good luck, I'll let you know if I find a cure! Yours, Mark
adrianoconnor
Posts: 32
Joined: Sat Oct 22, 2011 8:53 am
Location: Ireland

The steady march of OT

Post by adrianoconnor »

Hi Mark. I hope I didn't offend you with my direct remarks. I have been suffering with OT for more than 10 years and diagnosed about 7 years. That's when I found the OT web site.(which is fantastic, thanks to Gloria) When I was diagnosed the neurologist put me on Gabapentin which did nothing for my tremors and gave me a giddiness which has got worse and worse. So in some ways I might have been better not going to the neurologist at all.
When I say the site is " fantastic " I mean it because it is a great support for us poor folk with OT. As for finding more about the complaint I find that going through the numerous posts on the Forum you can get a great insight into the experience of our fellow sufferers. I know for a fact that the only people who understand OT are the ones who suffer from it. I find that when you meet people, and you're standing and saying hello and explaining that you are unable to stand, they continue the conversation as if you hadn't mentioned it. I think its because OT is not a common complaint, and people have not heard about it, they find it hard to comprehend. (this include a lot of doctors as well). Finally, I find you can get a good idea, from looking at the post, about effect of some of the medication dished out to other sufferers. Some people said the gabapentin affects the mind and the memory. Thats why I stopped taking it.
On that note. I'll wish you good luck. Adrian
Mark
Posts: 16
Joined: Mon May 22, 2017 5:41 pm

Re: New to the forum? post a quick introduction

Post by Mark »

Dear Adrian, Great to hear from you again so soon. Not at all offended, you neither I hope. Loved your comment 'they carry on talking as if I hadn't said anything I must sit down'.
So far I am very lucky but I can see yours has progressed over time.
I wonder if your experience is the OT normal and it's time frame.
Still hoping that not all OTers progress to a C zero but stabilise at C5' still wonder about timing, seems a lot of people have extremely mild symptoms and for a long time don't really notice?
Yes, many thanks to Gloria and all contributors. Yours, Mark
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: New to the forum? post a quick introduction

Post by gloria »

Mark: It is strange that I feel I've have heard from a Mark before stating the same queries about OT......my answer is the same with a beginning question of how you were diagnosed by your neurologist? With the diagnosing of OT an EMG is used to determine the Hz-Hertz frequency per second ........the common one and unique frequency for Orthostatic is in the range of 13-18 Hz and a second feature of OT is if there is a distant sound of a helicoper sound using a stethoscope. OT is progressive starting generally with standing time of 15 minutes and progressing in time to only seconds .....after 30 years I have no standing time at all. All this info is generally explained at the time you are diagnosed since this is the common determining description of OT. Living with OT and developing coping skills is the way we must live ........reading the website as you know you will learn of ways other OT'ers have used and shared and perhaps you in turn will share yours. Gloria
Marianne
Posts: 98
Joined: Thu May 19, 2005 7:59 pm
Location: New Jersey, USA

Re: New to the forum? post a quick introduction

Post by Marianne »

Good evening Gloria just wanted to say that not all of us are diagnosed by EMG. I was diagnosed by a movements specialist almost 23 years ago who is a clinician and a researcher. He was able to diagnose me by observation. I too have noticed my standing time has deteriorated. Although I have some “good days” most of the time if I’m not moving it’s seconds. Still on 8mg of Clonazepam daily. Two total knee replacements have not helped. Have you heard about the new non-invasive treatment being performed by Penn Medicine for ET with the use of an MRI? Hoping Dr Torres can give us OT’ers some hope. I will be speaking to my neurologist when I see him next month. - Marianne
LMP1
Posts: 42
Joined: Thu Sep 05, 2013 1:15 am
Location: Kaikoura, New Zealand

Re: New to the forum? post a quick introduction

Post by LMP1 »

Marianne, My Neurologist diagnosed my OT without an EMG. I spent an hour with him while he had me perform different movements, including trying to walk down a hallway without heading towards a wall for support - which I couldn't do!! To counteract that, he advised me to walk with longer strides. He told me that there was a test he could order for me (an EMG) but did not believe it was necessary as he was certain I had OT. He also diagnosed ET of the head at the same time. 14 weeks ago I had a total replacement of my right knee and while my recovery went very well and I had a straight leg within four weeks and a 115 degree bend (now at 120 degrees), I seem to have hit a bit of a wall. After my usual 45 minute daily walk, my knee becomes very stiff and swells up. It is also very painful to walk up steps and to do my squat exercises. I've been back to my physiotherapist who is very pleased with the movement in my knee. She stated that while she does not know much about OT, she believes it probably is having an impact on the swelling/stiffness in my knee, especially because I told her that I always had to sit down and rest after my daily walk prior to my operation. I know my OT has been "playing up" lately - probably because I've been trying to do too much on my feet - but would be interested to know if you had similar problems with your recovery from knee surgery.
Kind regards, Lynette (Kaikoura, New Zealand)
Marianne
Posts: 98
Joined: Thu May 19, 2005 7:59 pm
Location: New Jersey, USA

Re: New to the forum? post a quick introduction

Post by Marianne »

Hello Lynette I read your post and I really did not have much of a problem vis a vis my OT and knee replacement. I had my surgery on 10/3 and PT until the end of December. The stiffness in my knee has dissipated and my knee feels almost normal. However, I can only walk a very short distance before immediately finding somewhere to sit. I keep stools in strategic locations in my home in case I need to sit. I cannot cook at the stove unless I am sitting. I use an electric scooter if I’m going somewhere that requires walking. I use a recumbent stationary bike to exercise since I cannot take walks. My standing time has shortened drastically over the years and many of the plans I had to travel to Europe during my retirement have had to be put off. I hope that my standing time doesn’t deteriorate any further. I wish you the best - Marianne
LMP1
Posts: 42
Joined: Thu Sep 05, 2013 1:15 am
Location: Kaikoura, New Zealand

Re: New to the forum? post a quick introduction

Post by LMP1 »

Hello Marianne. Thank you for your reply. Your OT is obviously far more advanced than mine, because I continue to take daily walks of about 45 minutes with our dog. I don't use a stool in the kitchen but do lean against the bench the whole time I'm in that area. I also can hardly operate at all in the kitchen if there is someone else working alongside me. I do have an exercycle too which I can ride without any pain, but still need to walk the dog or she becomes restless. I go back to my Surgeon in early March, so will see what he says about my knee. I do accept that if it is the OT interrupting the healing, there won't be anything he can do to help me. My best wishes to you. Lynette
Nin
Posts: 36
Joined: Fri May 03, 2013 12:09 pm
Location: Milwaukee, Wisconsin

Re: New to the forum? post a quick introduction

Post by Nin »

Hi Lynette - I'm looking at a possible knee replacement too and am concerned about how much of my symptoms are knee related and how much is OT. My right Achilles tendon has been a problem for over a year, and my PT who I trust a lot, has said that she thinks that the reason it won't heal is partly because of my OT and partly because of my knee problem. The OT component is that when I stand all of my muscles in the lower leg tighten up which puts pressure on the Achilles. And then with a bad knee, she said the front leg muscles shut down to protect the knee which makes the back leg muscles work harder. And not being able to walk is cutting down on exercise and I'm loosing stamina. This is all very frustrating as it constantly seems like one step forward and one step back.
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: New to the forum? post a quick introduction

Post by gloria »

Nin: Perhaps you should consult with your neurologist that diagnosed your OT for a opinion of
the situation you are faced with at the present . Perhaps that will help calm the anxiety you are feeling . All the best, Gloria
Nin
Posts: 36
Joined: Fri May 03, 2013 12:09 pm
Location: Milwaukee, Wisconsin

Re: New to the forum? post a quick introduction

Post by Nin »

Good idea Gloria - I hadn't thought about her. I haven't seen her in awhile as there wasn't much more she could do since I wasn't willing to take some of the meds she thought might help.
Joy Michele
Posts: 2
Joined: Thu Feb 15, 2018 12:31 pm
Location: California, USA

Re: New to the forum? post a quick introduction

Post by Joy Michele »

Introduction:
So happy to find you all! My name is Joy, I’m 66, and I have just recently been able to diagnose myself because of this site!
Having being told I had Parkinson’s, and never feeling like that was correct, I began searching. After years, I finally found you all! I typed in “can’t stand but can walk “ lol. Forget all the medical terms that lead me nowhere.
My neurologist has relocated, so I will have to travel to find a new one.
This is my first forum, learning how to navigate and get around will be a new challenge.
I’m excited to learn and share, as I no longer feel alone.
Thank you to all :)
Mark
Posts: 16
Joined: Mon May 22, 2017 5:41 pm

Hi Gloria, you have a good memory! 5940 was my reply that time.

Post by Mark »

gloria wrote: Sun Feb 04, 2018 6:04 pm
gloria wrote:Mark: It is strange that I feel I've have heard from a Mark before stating the same queries about OT......my answer is the same with a beginning question of how you were diagnosed by your neurologist? With the diagnosing of OT an EMG is used to determine the Hz-Hertz frequency per second ........the common one and unique frequency for Orthostatic is in the range of 13-18 Hz and a second feature of OT is if there is a distant sound of a helicoper sound using a stethoscope. OT is progressive starting generally with standing time of 15 minutes and progressing in time to only seconds .....after 30 years I have no standing time at all. All this info is generally explained at the time you are diagnosed since this is the common determining description of OT. Living with OT and developing coping skills is the way we must live ........reading the website as you know you will learn of ways other OT'ers have used and shared and perhaps you in turn will share yours. Gloria
Mark: It is strange that I feel I've have heard from a Mark before stating the same queries about OT......my answer is the same with a beginning question of how you were diagnosed by your neurologist? With the diagnosing of OT an EMG is used to determine the Hz-Hertz frequency per second ........the common one and unique frequency for Orthostatic is in the range of 13-18 Hz and a second feature of OT is if there is a distant sound of a helicoper sound using a stethoscope. OT is progressive starting generally with standing time of 15 minutes and progressing in time to only seconds .....after 30 years I have no standing time at all. All this info is generally explained at the time you are diagnosed since this is the common determining description of OT. Living with OT and developing coping skills is the way we must live ........reading the website as you know you will learn of ways other OT'ers have used and shared and perhaps you in turn will share yours. Gloria
Mark
Posts: 16
Joined: Mon May 22, 2017 5:41 pm

My straw pole!

Post by Mark »

Dear Gloria,
You are quite right; I did write before and you wanted chapter and verse regarding my diagnosis etc. I replied on 5940.
What I really want to know is whether OT is always progressive, leading inevitably to zero standing time in the end. Are some OTers luckier than others?
My simptoms are fairly mild, I may have had OT for many years but it only became an issue two years ago during a depressive episode which is now resolved thanks to Proxac. Others who have posted have clearly reached a much worse place than me so far.
Will I end up with zero standing time (and rely on a scooter)? How long will it take to reach that stage?
All the best to you Gloria and your OT flock! Yours, Mark
LMP1
Posts: 42
Joined: Thu Sep 05, 2013 1:15 am
Location: Kaikoura, New Zealand

Re: New to the forum? post a quick introduction

Post by LMP1 »

Nin, sorry I've been a bit slow in replying to you about your possible knee replacement. I'm unsure if the OT itself did the damage to my knee - all I know is that I need to continue to walk for exercise and my knee was giving me pain and giving way on me, especially when walking downhill. I did have arthroscopic treatment in the middle of last year for a meniscus tear and while the Surgeon was doing that he did find Grade 2 and 3 damage to other parts of my knee. The arthroscopy only lasted four weeks before my knee gave way on me again, hence the total replacement. You mention problems with your achilles and the possibility that the OT is the cause because of the extra pressures put on it from trying to stand and keep your balance. I believe that to be true because I have very tight calf muscles which I blame on standing too much and my muscles over-compensating. I have also had plantar plate tear surgery on both my feet in the last four years, and believe that the damage was done because of curling my toes to grip the ground. OT certainly has a lot to answer for, but I don't want to spend my days sitting on my backside and letting my legs seize up, so just grit my teeth and carry on.

I can definitely recommend knee replacement if you are desperately in need of the operation, despite the stiffness and pain I'm having at the moment at the end of my walks. I have noticed that in the past couple of days this has begun to ease, so fingers crossed I'm through the other side. Best wishes, Lynette
Post Reply