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.

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Go Grandma
Posts: 1
Joined: Thu Aug 27, 2009 1:34 pm

Re: New to the forum? post a quick introduction

Post by Go Grandma »

As of yesterday I finally have an answer to why I was always feeling like a clutz when items I would be holding would suddenly fall from my shaking hands. I now have the knowledge that my hands and legs are being challenged by my friend "Primary Orthostatic Tremor". After doctoring for over 15 years and trying to explain my "shaking legs" when I stood for a short period of time I have finally been givien a name and that is why I call it my friend. Now I can take it with me and not feel so confused about what is going on. Yesterday was a surprise because I was not aware that it could affect the hands in such a way as mine. I was treated for EssentialTremor which didn't ever surprise me because many members of my family going back to my grandfather have been told they had this condition. As an avid gardner and busy grandma I am constantly on the "run". Just don't ask me to stand still.
ivan59
Posts: 1
Joined: Sun Aug 30, 2009 6:21 pm

Re: New to the forum? post a quick introduction

Post by ivan59 »

Hi,
My name is ivan, live in NL, Canada,i have OT and ET. thought i was the only person in the world who had this condition, till i found this site a couple of
years ago.what a relief, what a great site.
I`m a electrician so you can imagine what i`ve went through over the years, tremors in my legs & hands. I`ve had it for years
i cannot remember a time in my life when i was not looking around for somewhere to sit or lean.
Last edited by ivan59 on Wed Oct 07, 2009 6:15 pm, edited 2 times in total.
owen-lynettepickles
Posts: 54
Joined: Sat Jun 06, 2009 4:26 am
Location: Blenheim, New Zealand

Re: New to the forum? post a quick introduction

Post by owen-lynettepickles »

Hello everyone - My name is Lynetteand I am in my early 50's. I live in a very isolated part of New Zealand called the Chatham Islands, 800km east of the South Island of New Zealand, which means getting to Specialists is a journey and a half. I was diagnosed with OT (and a mild Essential Tremor in the head) in June this year and what a relief to finally have a name for my condition. Doctors were so sure that my balance problems were due to an inner ear condition, but as soon as I saw the Otolaryngologist he said "no way", especially when I almost knocked a piece of his expensive equipment over when he had me walk across the room and turn around and walk back. He suggested I see a Neurologist and after a wait of two months, which seemed forever as my lurching to the left became worse, I finally had a name. (Even my GP had become concerned at my deterioration.)

An hour with the Neurologist and he had diagnosed me. He told me how to walk to improve my gait - take longer steps, concentrate on putting my heel to the ground first so that I walked more upright, and walk faster. He said there is no medication suitable (I'm not keen on having to take anything, so that's fine with me) and that I should continue to walk as much as possible. Since then I've been heeding his advice, although when tired the lurching tends to come back, and I look for something to lean on. We have a beautiful beach to take long walks on and with Spring now here, I'm getting out more, rather than rely on the treadmill. I do find though on my return from walking that I cannot stand for long before needing a wall to lean on. I find I have to concentrate when going up and down steps, something I forget about at times, leading to some heartstopping moments. Living in such a small community (we only have a population of 600 over the two inhabited islands) has given me time and space to adjust, but my first trip to the Mainland on my own six weeks ago was a little daunting. However I managed which gave me a huge confidence boost as I know that I can't rely on my husband to be with me all the time for support. Walking down a city street amongst many people can be daunting for many Chatham Islanders at the best of times if they haven't been off-Island for a while, but when you are unsure what your legs are going to do, it makes it even more daunting.

We, my husband and I, our work colleagues, extended family and friends, have found the information on this site of huge benefit and I wish to thank Gloria and her son for their work in establishing the site. After leaving the Neurologist's room back in early June we immediately went back to our hotel and hooked up on-line to read more about the condition. This site was what we found and after reading the first paragraph, we knew I had been given the right diagnosis.

Some things I have picked up from reading the forum is that some people said their tremors kicked in after surgery. I had surgery in August 2008 and never felt right from then on, culminating in my first bad "stagger" three months later. I also was diagnosed with an underactive thyroid when my GP was trying to work out what was wrong with me so am now on medication for that. I did read on this site that some sufferers found that high blood pressure interfered with the condition too. I had been on blood pressure medication for 18 months before seeing the Neurologist, and when it was noted that it was continuing to rise, my GP increased the dosage which has brought it back to a normal level. We have no family history of tremors in our family, so this has been a huge learning curve for everyone.

Thank you to everyone who contributes to this site. It helps to know that there are others out there, albeit a long long way from where we live, so I don't feel so lonely. I do have my moments of frustration with this condition, but just tell myself there are plenty of people in this world far worse off than I am. I can still walk on the beach, can still smell the sea and can still watch the waves break on the sand, even on a stormy day.

Regards, Lynette
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: New to the forum? post a quick introduction

Post by Betty »

Hi Pamela,

My name is Betty and I read your post from earlier this year; see below:

"My name is Pamela, I am in my late 40's and live in New Hampshire. Recently, I was finally "officially" diagnosed with OT,"

I sent you a personal note; so you must access it by checking your messages after you have signed on to the site.

If you would like more information, please let me know. My email address is: bjlhi@yahoo.com

Betty in Florida
winiwhite
Posts: 7
Joined: Wed Oct 07, 2009 5:36 pm

Re: New to the forum? post a quick introduction

Post by winiwhite »

Just diagnosed yesterday. Nice to know I'm not alone, although I have talked to another person through a common friend. Glad this forum exists. I'm 70 (for another month) and live in Santa Barbara, CA. Wini White
joybel
Posts: 2
Joined: Wed Oct 21, 2009 7:19 pm

Re: New to the forum? post a quick introduction

Post by joybel »

Hi everyone I have just found this site and I am very excited to hear your stories and know that I am with like minded people. I have just turned 80 and with hindsight realise I have had ot for some 15 years. I was diagnosed with ET about 8 years ago and later saw a mobility disorder specialist who diagnosed OT. I find ET frustrating but something I can cope with but OT is much worse as I now cannot stand without support. I am fortunate to have had over 50 years or more of good health only seeing a doctor when I was having babies. So when I look around my friends as we all age I feel I am blessed as apart from tremor I am very fit.
Joybel
joybel
Posts: 2
Joined: Wed Oct 21, 2009 7:19 pm

Re: New to the forum? post a quick introduction

Post by joybel »

Thank you for your welcome Gloria. I was adopted but I believe my birth family came from south east England. I live in Australia now. I know an uncle, his son and a grandson all had ET but I don't think they had OT. So far none of my family are showing any symptoms.
Joybel
janet2QX
Posts: 6
Joined: Thu Nov 26, 2009 11:37 am

Re: New to the forum? post a quick introduction

Post by janet2QX »

I am a 76 year old female. I live in SD but also in AZ for winter. I was diagnosed with OT on Nov. 2, 2009 after dealing with this problem for 30 years. I have been told that I have "Ataxia, that I was depressed, live with it." I was elated to finally have a diagnosis. Just this month I finallly met a doctor at Mayo in Rochester who knew of this condition. I am now starting a new medication and am hoping for help. I made this discovery because a friend gave me an article from a magazine called "Tremor Talk" where there was an article that featured Gloria and her orthostatic internet address. I read the articles. I said. "That's me!" They are expressing how I am, how I feel. I have never met anyone who has the same symptoms as I do! What a relief to know that there are others out there like me. I am so thankful for Gloria, for Dr. Matsumatto in Rochester and all of the others who have written their stories.
I have been on various medications for years from doctors who are trying to help, but most do not know of this condition.
How do I find others in my area?
Janet
Abinadi
Posts: 53
Joined: Thu Feb 05, 2004 3:36 am
Location: Volcán, Chiriqui, Panama (Central America)

Re: New to the forum? post a quick introduction

Post by Abinadi »

[quote="janet2QX"]
I have been on various medications for years from doctors who are trying to help, but most do not know of this condition.
How do I find others in my area?
Janet[/quote]

Janet,
Aside from putting your geographical location in your profile so that others from your area(s) reading this forum will know where you are, you might try doing the same thing that led you to us. Put your story in the newspapers.

What I mean by that, is contact your local news outlets and ask for their medical reporter or medical desk. Offer to tell that person about the condition and this website. Tell them what a blessing it would be to their readers who might be similarly afflicted to find out, as you did, about this rare and poorly understood condition. Perhaps that effort will bless someone else's life in your area.

Rich
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 and Welcome Janet: I'm glad that you found our forum. We are all basically "in the same boat" except that we are all on different meds and in different stages of this condition. We share our experiences with many things, our meds, assistance devices which help (or hinder) us, physicians we have been to, etc.,etc. I hope that you will continue to come back and comment on your progress. I myself would be interested in knowing the medication you have been prescribed. You may be interested in knowing that a few of our members had a meeting not too long ago with Dr. Matsumoto in Rochester, MN. Unfortunately, I was unable to attend, but there is a video on the forum that you can view of the meeting between some of our forum members and Dr. Matsumoto. His explanation of OT was put into layman terms so that everyone was able to understand exactly what happens to those of us with this condition. I am sure that if you were seen by Dr. Matsumoto, that he probably gave you the same information. I look forward to hearing from you.

Be Well,
Kaylie
MaureenB
Posts: 59
Joined: Mon Mar 22, 2010 4:24 am
Location: Southport UK

Re: New to the forum? post a quick introduction

Post by MaureenB »

Hello Gloria and fellow OT Wobblers.
April 1st 2010........... I wish O T was an Aprils Fools Day Joke...,,, However ...........

Congratulation Gloria and Mike for the excellent broadcast and to Jeff for getting the site up and running again.
Neurosupport at the Walton centre in Liverpool informed me of your helpful web site.
My name is Maureen I live in Southport England I have struggled with Orthostatic Tremor for aprox 16years. I remember the first time I had a tremor ,we were attending a funeral of a neighbour, my husband noticed something was wrong and asked me if I was o k , however after sitting for a while it passed and I thought nothing of it..A few hours later I was standing and the feeling returned..........and we all know the story from there.
Over the years I did the usual rounds of medics to no avail; however by the time we had moved to a new home and Doctor, I had reached the stage were my slow walking was beginning to be affected.
One particular day about 6years ago I was feeling quite down and decided to consult my new Doctor ,I asked if I needed the help of a psychologist or a neurologist, as I could not stand without an overwhelming need to sit down even on the floor if necessary. He immediately said it sounds like Primary Orthostatic Tremor, he had recently been reading an article on the subject. It was such a relief to put a name to it, as I know the reader will fully understand. .....I was referred to Dr Weishman a Neurologist at the Walton Centre in Liverpool, who confirmed the diagnoses. I visit him on a regular basis. My husband and I feel he fully understands the life changing and unrelenting struggle O T brings .and is doing his best to help me, however as yet we have not found the answer,
Let us hope we hear good news from Mikes Neurologist. 
I have yet to meet another person with this challenge (I feel we would all recognise the symptoms) my standing time is now nonexistent ,and the strain is mentally and physically exhausting ,slow movement and just getting going is also becoming a nightmare and exhausting,.
I smiled at the Taluses Lautrec impersonation by another member on the site .I do that all the time in the garden (when my knees permit) or I just bum around, however when on holiday in Europe a few years ago coming out of the sea on hands and knees was not a pretty sight, especially as I had been a life guard in the past, how life changes!! ha.ha.
My husband is a wonderful help and we laugh .when I am on the move he knows to stand back or get pushed about to let me through. We have stools and chairs in abundance especially in the garden I now collect different types of chairs instead of shoes.
Last year I found a shopping trolley on the internet ,it’s called ....shop a seat ...very sturdy for panic moments it has two wheels the pull along type...Its manufactured by....J&CR Wood of Yorkshire .www.shopaseat.co.uk .....I purchased it from Amazon...... I have found it a great help, I have to say not the most glamorous but I feel we all fall between two stools, not wheelchair bound but need more help other than a folding walking (standing) stick. ,,,
However probably not the type of thing I would recommend for the guys.

Keeping positive, Regards MaureenB. Southport uk
golfnut
Posts: 192
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: New to the forum? post a quick introduction

Post by golfnut »

How nice to see the forum up and running again - and how sad that all the (of course extremely wise and witty) postings made during a period of time, has been lost in space! :)

A quick introduction is that I, a female of almost 50 years old, am intensely interested in golf, fairly recent OT-sufferer and now on a medication that helps me! Instead of telling you the full story here, I will restart the "progress-thread" that is now floating in space. I found it very valuable to be able to gather the "time-lines" as they give important information for newly diagnosed.

I live in Sweden and I hope to find OT-friends in (Northern) Europe - perhaps a meeting on this side of the pond in the future?

Warmest greetings to all,
Anne/ the golfnut
MaureenB
Posts: 59
Joined: Mon Mar 22, 2010 4:24 am
Location: Southport UK

Re: New to the forum? post a quick introduction

Post by MaureenB »

Hi Anne (the golfnut)
so pleased to hear you have found some medication to keep to steady and you are still able to enjoy golf....happy days
Kindest regards Maureen Uk.
Cara
Posts: 2
Joined: Tue Apr 20, 2010 11:32 pm

Re: New to the forum? post a quick introduction

Post by Cara »

Hi everyone. I have had OT for about 5 years now. I actually did join the forum a long time ago but didn't have much time to be online and there didn't seem to be many new posts. I have been getting by on just ibuprofen until the past few months when I got worse. I tried gabapentin first. very low dose. it helped a little but was making me gain weight and I have been trying to lose so now I am trying clonazepam. .5mg twice a day. that was making me way too sleepy and afraid to drive. taking one a day is helping. I can function and feel a little better so I think I will stick with this. on days when I don't have to drive I will take 2 if I need to. I live alone and sometimes get so frustrated at the limitations. I used to do all my own yardwork and now I have to pay someone to do it for me and I can't really afford to. stuff like that. it gets to me but I am grateful that I can walk and it is good to have people to talk to about it. no one but a fellow sufferer could ever understand what living with this is really like. I need to read the topic about helpful things but right now I am too tired.. if you don't mind I will ask a question here for now. I was wondering if those stick chairs that fold up fit under an airplane seat or in the overhead. I have not flown in over 10 years and I am possibly going to Florida this summer. I live in Arkansas. I am afraid of flying to begin with but I need to see my elderly parents. anyway I'd sure like to know. thanks
Cara
MaureenB
Posts: 59
Joined: Mon Mar 22, 2010 4:24 am
Location: Southport UK

Re: New to the forum? post a quick introduction

Post by MaureenB »

Hi Cara
my consultant supplied me with a letter, to inform airlines I was fit to fly, but requred help,
The Airline was wonderful, supplied me with a wheelchair and boarded me first on last off. my husband was able to retreive my luggage however the airline would also have done that for me . We all understand you feel fellow passengers are wondering what is going on when you just get up and walk away ,ha ha. My consultand implied that's their proplem, you have Primary orthostatic Tremor.
"Get everybody involved ", having said that I have not been overseas for a few years I am find things such an effort at present, I must be more like Mike in Spain, who seems to live life to the full .I think this is where the forum helps us to keep positive.
Kindest regards Maureen
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