New to the forum? post a quick introduction

[shep19uk]

Thanks for the invitation to the next meeting. I think I would have to give this one a miss bit if there is ever a meeting in the UK id like to be there.
I was 39 when diagnosed and think this is quite young. I play netball and like to go to the gym but always feel more shakey after exercise. Is this normal?

[gloria]

Sarah: You said in your first posting "Only been diagnosed with OT for 6 months and taking clonazepam for last 2 weeks" , however you did not say how long you had symptoms before going to a doctor. Also how did your doctor test you to determine your diagnosis? In answer to your question about exercise and feeling more shakey after..... although it is very important to exercise to keep our body muscles in shape it is normal after a good work out to be tired and therefore feel shakey. Do you do much walking , that is the best? Gloria

[shep19uk]

Hi Gloria. I felt my legs shaking mainly in the shower a long time before having it checked out. Probably 2 years before. I then had a lot of stress at work which made the shaking worse. This and other symptoms related to anxiety made me go to the GP. She didn't know why my legs shook when the anxiety passed so referred me to a neurologist. He watched me walk and tested my reflexes. Had me stand and saw the slight movement in my feet/ankles. I was quite relieved it wasn't multiple sclerosis as my father had suffered with it for a long time. I do a lot of walking and enjoy hiking/mountain climbing but may need to switch to more gentle walking. It is a strange condition and I'm still trying to get my head round it. At the moment I am coping ok, I tend to move my feet around when I feel my legs shaking. I'm not sure if this is a good remedy but works for now. I need to read more about your story Gloria. I will try and read it this week. It's good for me to hear how others cope. I find clonazepam works to lesson the shaking and have been told I can double the dose as I am on a really low dose at the moment so will see how I get on with that.
I am really happy to find this site too. Thank you.

[Susan Fonteyne]

Hi Everyone, I was happy to find this site for OT as I do not know anyone who has even heard of it before. I was diagnosed with OT about a year ago. I have probably had it for 4 or 5 years. I also have Essential Tremor (hereditary) in my hands and arms for which I see a neurologist yearly. I was given Propranalol which helps but caused me to gain 30lbs. I thought that the ET was in my legs as well, but when I talked to the neurologist about my legs he said that this was a different problem, not part of the ET. He prescribed clonozapam but I didn't see any improvement. I have been fairly depressed and reclusive in the last few years. Other than going to work I tried to avoid going anywhere, especially shopping. I finally realized that the reason I hated shopping was that by the time I got to the cash register to pay, I was worn out, aching, shaking and sweating. I owned my own business and fortunately my job was mostly sitting down doing office work. I recently sold my business and am temporarily retired. I am quite concerned about getting a new job because I am not sure what I am capable of doing. I know I cannot be on my feet for long periods of time. I realize that I am in poor condition from being so inactive for so long. I have just been to embarrassed to go anywhere. What exercises are other people able to do? I am not in the least athletic or agile. When sitting, I feel normal and think I can do this or that, but in fact even the most minor tasks such as cooking, cleaning, or even showering are exhausting. I am encouraged by reading some of the tips for coping with OT. I hope I can find ways to adjust and get on with my life although it feels like I will have to change my expectations of what I can do in the future. Thanks for being there.
Sue F.

[gloria]

Hello Sue: Welcome to the website and see that you are rather new to OT. Please do not let OT control you which is why you feel depressed and reclusive. You will find as you read more from the Forum that you are being restricted in doing everyday things the way all of us are challenged, you are not alone! I'm happy you have found coping skills from our OT Community that are helping you. You will learn your limitations and ways to work around them. OT is normally exhausting but being over weight exacerbates not only exhaustion but our balance and mobility. I know you want to work your way to a better level and you can because you know you are not alone. By the way you did not leave your LOCATION in your profile when you registered. I suggest that you do and perhaps you will find someone with OT that lives within reasonable distance to meet and exchange thoughts. Gloria

[snickers]

Hello,
I am a soon to be 62 y.o.female ,living in British Columbia ,Canada. Semi-retired.
I am so relieved to find this place! It has validated my symptoms.
I have had tumorous legs when standing ,for the past 2 years or so and just thought that I had weak muscles in my quadriceps., so have been walking more and more , bike riding to no avail.
last week an event happened that was scary,but at the same time, forced me to look at what was going on....hence the research and finding this site.
i won't go into the details but suffice it to say, most everything I read on here,is the same symptoms that I have been experiencing.
I have learned to adapt in many instances(I always take a buggy into the grocery store,even if just buying a couple of items),just in case I meet someone I know,so that I can lean on it.
When neighbours come down the street ,and I am outside, doing yard work, I make sure I have a rake...,snow shovel(or a tree) that I can lean on!!
I went to my doctor today, he has heard of this, I am being referred for EMG's.
As another poster has said...this is an inconvenience, i don't want drugs, and I know there is no cure.
So...I am glad to be here,and thank you to Gloria( I heard the radio show on CBC radio and It was great)!
So...this is not a "quick" intro...but my story so far!

snickers.

[gloria]

Hello Snickers: So happy that you found us, now you are a member of the OT community that together is making a difference for those who suffer with this disability in our lives. Also this is a great place to communicate with people who really understand. Thanks for posting your story "so far" and look forward to your reporting more on how you are doing. Gloria

PS: I see you found Pat Whitney's OT Poem........ She is a very talented and helpful member.

[admin]

Orthostatic Tremor: Am I the Only One? by Jane Baker Conner

An OT book! Well this is a surprise. It looks to have been released earlier this Month, so this is hot off the press. At the bottom is a link to a sample of the book.

I have only read the sample pages but have ordered the book and hopefully will post a review at some point.

Here's a quick description from the Author:

"Do your legs tremble when you stand in place? Do you find yourself needing to sit down, so you won't fall? Then you have as many questions as I do. What is wrong with me? How do I cope with this? Is there medicine to help? What about physical therapy? What is this new brain surgery known as deep brain stimulation? Will it help me? Am I the only one to have this problem?

In my twenty-two-year trek with orthostatic tremor, I have found some of the answers. A rare neurological movement disorder, OT continues to baffle medical science. I am sharing my experiences in order to: 1) help identify orthostatic tremor symptoms , 2) explain the alternative of deep brain stimulation, 3) describe practical ways to manage the unique challenges of OT, 4) teach how to cope with an HMO's process of securing outside referral, and 5) offer hope for living with a disorder that currently has no cure."

Sample pages: http://bit.ly/18hQjCj

[jolarson]

I ordered the book through amazon. It is a paperback and the price is only $8.09! I also had no shipping changes using prime. Hope it tells our story so I can lend it to my family and friends.

[Dwight Kraai]

An early concern about this book and the author. One can download the first 3 or 4 chapters. In chapter 2, page 5 the author quotes her neurologist's diagnosis as "Orthostatic tremor, also known as shaky leg syndrome".
wrong, but, maybe this comparison is clarified later in the book
These are two different ailments.

Dwight Kraai

[admin]

Hi Dwight

Thanks for posting. Where did you find the link to download the first couple chapters? It would be great if you could you post a link.

The shaky leg term has been hanging around as another term for OT, here's a link to an article from the New England Journal of Medicine March 2000 titled "Shaky-Leg Syndrome and Vitamin B12 Deficiency". Although the term seems to be used much less frequently in newer papers.

Restless legs (RLS) is one that often gets tossed into the mix too, and this is definitely a different problem.

thanks again,

j

[Dwight Kraai]

Sample pages: http://bit.ly/18hQjCj

The source of my reference. It is also listed in an email 2 or 3 up

Dwight

[admin]

Hi Dwight

OK, thanks, I thought there might be more pages available elsewhere.

best regards

[Di Di]

I too have ordered a copy thru Amazon...and thrilled to have the opportunity to hold and own a book about OT written in layman's terms ...from the Authors point of view....her story ....
think it a shame it is already causing negative ripples ,before being fully read.

I plan to read it and lend out to friends who would like and need to have more of an understanding ....which will certainly make my life a whole lot easier ...
A BIG THANK YOU TO THE AUTHOR .......just having people logging into Amazon looking for the book has got to help OT being noticed ...............................Didi NZ

[jolarson]

Is the author of this book a member of this site?