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

gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Dear Betty: I must repeat to everyone again how you had been one of the first OT friends I met and have remained very good friends ever since. Right from the beginning and officially diagnosis by Dr. Seth Pullman you have OT, you have always had "feet and lower legs doing a different "twist" with walking so it is not to be questioned that they are now different wanting to be warm instead of cool. You have very independent legs my friend !!! Always look forward to your postings, Gloria
Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

Dear Gloria,

Yes, we have been friends for many, many years now, and you are correct, I seem to be different in many ways. My legs don't react as most with OT, and I know I have OT after being diagnosed by Dr. Pullman. He gave me all my records and charts. However, my legs seem to have a mind of their own. They never seem to want to do what my mind tells them to do.

But, I continue to try to do whatever I can at this point and let the past go ~ the things I used to do.

Betty
BobSweden
Posts: 4
Joined: Tue Feb 23, 2016 5:57 pm
Location: Sweden

Re: How is everyone?

Post by BobSweden »

Hello there veterans and newcomers !

An update from Sweden !

My wife is now 65 and have had OT for lets say visibly manifested for 10 years.

She was diagnosed some 3 years ago but that is very much it. I repetingly urge her to ask her doctor to again remitte her to a neurologist for examining the progress and also make the OT condition visible in Sweden. She is and has Always been a fighter but I realize now that this is really getting to her. As I said no cure, no interest - is'nt that strange ? And her problems are increasing by now also strong tremor by her hands especially then she is affected otherwise with the standing problem now Close to at the most 10 sec.

I have had Contact with 3-4 OT's here in Sweden and they can all relate to the total ignorance of OT patients such if it was some "fantasydisease" not to be studied by a serious neurlogist.

I asked the editors of the Swedish "Läkaratidningen" for a qoute for an advertisement i in the journal set up like an urge for any neurologist in Sweden to grip the chance to be number one specialist on OT in Sweden or Scandinavia. Unfortunately the price for the ad was to high and I then I asked the editor if they could put together a deacent article on OT, thus maybe stimulate some Young neurologist or several. He recommended me to Contact the neurologists own paper and this i have done. So, right now I am waiting for some kind of reaction from the editor of that publication.

To everybody out there - stay positive and fight for proper attention to OT !!!!!

Bob
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Hello Bob: Thank you for your update but I'm sorry to hear of the frustation the lack of interest in OT that faces your wife and others in Sweden. Is there any large medical hospital centers in Sweden that you can contact and ask about having neurological movement disorder centers? I'm sure you have tried to find them. However as I have read your wife seems to be following the normal expected progression of OT but understandably frustration too. We have a lady that lives in Sweden that posts as the Golfnut. I don't know if you have read any of her posts but suggest that you do and have your wife read them too and maybe she can be of help as she has a good approach to OT that might help your wife.
So sorry I cannot be of more help but please keep us updated, Gloria
admin
Site Admin
Posts: 544
Joined: Fri Jan 16, 2004 5:25 pm

Re: How is everyone?

Post by admin »

Interested in keeping up with the proceedings of the NORD clinical trial - "rTMS Therapy for Primary Orthostatic Tremor" at the University of Florida? read and contribute your thoughts and questions to this discussion - Link to discussion
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

If someone asked me now how I go thru my days with OT , I would answer I’m mentally and physically exhausted by it but I have been living with it for 30 years !!! Naturally the time cut in my standing time has gone from minutes to seconds so by the end of day I’m expected to be tired. It is called getting older with OT !!!!!!! Nonetheless I still can maneuver thru the days with all the coping skills I have learned thru time. My overall health is good and the only health issues are bone on bone knees and osteoporoses entering the base of my spinal cord. Don't have headaces or get colds...... Would like to hear updates from my OT friends. Gloria
Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

Hello Gloria,

I thought I would try to give an update on how I get through my days with OT. It is not easy, but life isn't always easy. We do what we can and try not to dwell on the things we are no longer able to do.

My standing time is seconds to nil. My legs are weak and I have great difficulty walking now. Mornings are best for me, but still not good. I don't go anywhere alone except to my hairdresser. She walks me to my car after my appointment. By late afternoon and evening, I must use my walker. I would use it more, but it is too heavy for me to lift, and if Paul is with me, I don't need my walker. However, when shopping I now use one of the motorized vehicles (which I only started using the last month), and it certainly does make shopping much easier.

My overall health is good too, and if I didn't have OT, I would be able to do all the things I did when I was in my 50's; but I DO have OT and those things are no longer an option for me.

I have gotten to the point my tremors are so severe when trying to walk, I do look like someone with Parkinson's Disease. Example: Last week I was in a crowd, trying to pick up tickets for a function and someone stopped me to talk (we all know how difficult that is), he had a drink in his hand and trying to give a quick "hello", I hit his arm, his drink went all over the floor, a table and a chair, as well as me. I could have cried! :cry: I quickly sat in a chair and apologized over and over. Several people came over, got paper towels and cleaned up the mess. This gentleman said he would get my tickets, I thanked him and left. That's the first time that has happened and I hope it doesn't happen again....life goes on, and we continue to try to live as normal a life as we can.

The main thing is to keep a positive attitude and think.....it could be worse! :)

Betty
Alibaba
Posts: 5
Joined: Mon Aug 11, 2014 6:10 am
Location: Antwerp/Belgium

Re: How is everyone?

Post by Alibaba »

Hello Betty,

Same with my OT I have the same problem as you. I also can not walk any more.
My Neurologist has measured my brains, nerves, blood, vessels and muscles but could not find anything.

Walking was about the only thing I still could do.
INow I need some time to mental handle this. :roll:

Wish you all the best and a lot of courage

Alibaba
Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

Hello Alibaba,

So nice to hear from you, but sorry to hear you are in the same position as I; very difficult to walk now. I can get around in the house, using walls for stability (wall walking as I say), and using furniture for balance as well.

How long have you had OT? I have had it for about 24 years. I have had all the tests and know, as most of us learn, it is a progressive disease and when we accept that fact, it makes things a little easier to handle. Sometimes it takes a while, especially if one has always been active. I was! It is difficult to realize we are unable to do so many things we did before OT. Now I reference things as BEFORE OT and AFTER OT.

I know I am very stubborn and not one to easily give up, so when things get tough ~ I get tougher! We must all stick together, try to encourage one another as much as possible and continue to be hopeful ~ I am ALWAYS hopeful.

Remember, you are not alone, you have friends here willing to help however we can. Stay strong and stay positive!

Keep us informed as to how you are doing....we all care!

Betty
Tressa
Posts: 8
Joined: Wed Feb 15, 2017 9:38 am

Re: How is everyone?

Post by Tressa »

Hi Everyone

Not sure if I'm posting this in the right place but I'm sure someone will give me some helpful advice if not! Just wanted to say how pleased I am to have found this place full of helpful advice and encouragement. It's great to read everyone's stories and coping strategies. I've recently been diagnosed with OT and am on my second week of clonazepam 1mg once daily. However I've had no effect at all. Is it early days or should it work almost immediately? Would increasing the dosage help or is it just a case of if a small dose doesn't work a higher one won't either? I've got an appointment with my GP on 13 March and will be asking all this but just wondered if anyone out there could help in the meantime. I'm still working and still trying to hide my condition from everyone and I know I should be upfront and open about it but I feel so bad - and that's probably making the tremors worse! I admire you all for just getting on with things, everyone sounds so positive. Hopefully I'll get there soon. Best wishes to you all.
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Hello my OT Friends: I have been a miss in reporting one part of my early OT experience before I was diagnosed with OT between 11/24/93- 9/16/98 aside of the symptoms of undiagnosed OT I was sufferering from much back pain with degenerative scoliosis and degenerative listhesis and had surgery for both conditions that included instrumentation for the listhesis. I remember the morning after the second surgery I got out of my hospital bed and walked to the window and yes I did not have any pain in my back but after a few minutes my OT symptoms remained. I have not had any back pain since but of course my OT standing time continued and now for only seconds. I have noticed there are a few OT friends who have reported back pain and wonder if they know the cause of their back pain? Gloria
MaureenB
Posts: 59
Joined: Mon Mar 22, 2010 4:24 am
Location: Southport UK

: How is everyone?

Post by MaureenB »

just been back to the Neurologist as I was struggling to walk slowly, just as bad a standing.
He diagnosis othostatic tremor. signs of peripheral large calibre fibre sensory neuropathy, and restless limb syndrome..
I only have pain in one shin bone and burning in the same leg.
He has given me 3 lines of treatment , the first is Pregabalin increase dose over a period..
I have been and still on Clonazepam
Has anybody out there been on Pregabalin (Lyrica)?

If it does not work Plan 2 will keep you informed
Trust you are all getting out....P S My doctor ordered a walker for me felt very very old but find it a boon its a 4 wheeler with a seat.....but wish I could still ride my bicycle...hey ho...regards maureen
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Maureen : Interesting report, whenever someone has OT Plus disorders it naturally complicates treatment of OT so please keep us posted how you are doing !!!!!!!! Hope to hear more updates from other OT friends too....... learning from each other is very important as well as helping the medical community to understand the challenges we are enduring ! Gloria
LMP1
Posts: 42
Joined: Thu Sep 05, 2013 1:15 am
Location: Kaikoura, New Zealand

Re: How is everyone?

Post by LMP1 »

Hello everyone. Thought it was about time I gave an update after the horrific 7.8 Kaikoura earthquake of November last year. Life is slowly getting back to normal in our town, but access to the north is still totally cut off because of the massive slips which have blocked the roads and rail. We do have daylight hour access south of the town on State Highway One but aftershocks or heavy rain still close that road too. Alternative access south is through an inland road and roading authorities are working furiously to get it up to a good standard before winter because the road is susceptible to ice and snow, and it also suffered severe earthquake damage. It is hoped the State Highway One coastal route will be fully open by June, but the road north is not expected to be open until the end of the year. All this has impacted severely on businesses in town. They rely on tourism and with access so limited, the numbers of visitors is way down. The Government has given some financial support to those businesses, and it is paying for the huge costs involved to get the roads and rail open, but until that happens, businesses are struggling. The Government is also paying for the cost to dredge the harbour. We had an uplift to the sea of about 2 metres, meaning the whale watch boats and fishermen struggle to get out to sea at low tide.

Just an example of how the blocked roads have disrupted every day life, last Thursday I had to drive to my former home town of Blenheim (north of Kaikoura) where our daughter and grandchildren live. I wanted to see them before flying to Wellington the next day to meet up with my husband to begin our holiday - flying to Adelaide, Australia for ten days. The road trip to Blenheim normally takes one and a half hours - Thursday it took seven and a half hours. I had to drive south for two hours before I began my journey north. With the alternative "State Highway One" not having been built to cope with so much traffic, the authorities are having to spend millions upgrading it. So much road works equals many delays, hence my long journey. I will have to do it all again at the end of next week when I drive back to Kaikoura.

Now to me!! I am learning to cope with the continual aftershocks, but admit that my heart rate still goes up when we get one, especially at night when I seem to notice them more. I still don't sleep very well - but I've never been a good sleeper. The whole "adrenaline thing" caused by the stress of the quakes has definitely affected the OT. It's hard to say if it's just a natural progression of the disease or if it is all stress related - I think a bit of both. I know I am more unstable when standing still and the shaking to other parts of my body is more noticeable, especially my head. (I was diagnosed with Essential Tremor of the head at the same time as I was diagnosed with OT.) I still do not take any medication for OT, apart from twice daily magnesium supplements to help with the leg pain. I walk the dog every day and feel my legs have strengthened because of the hills I have to contend with in Kaikoura, but it has resulted in more leg pain. Since arriving in Adelaide two day ago, we've been out walking quite a bit. It's been so long since I've had to walk amongst many people, I had forgotten how badly it affects the OT. Yesterday I felt myself getting very panicky when I had to negotiate the rush of people crossing at the traffic lights.

To summarise, I know my OT has progressed but my stubborn nature won't allow me to give in to it. I don't want to take any medication for it and I'm resisting having to get some aids like a walker to assist me. The only thing I have given in to, is to get a cleaner once a week to vacuum the house and wash the floor for me.

Regards to all
Lynette (Kaikoura, New Zealand) currently sunning it in Adelaide, Australia!!
gardenlily
Posts: 18
Joined: Tue Apr 12, 2016 12:51 pm

Re: How is everyone?

Post by gardenlily »

Hello, everyone,
Just read the article on "lessons learned from my patients" and have bookmarked it so I might share it with my neurologist and my family doctor as well. It really pinpointed so many of the difficulties one encounters dealing with OT. My husband and I just returned from a wonderful 3 week "trip of a lifetime" to Oahu and Maui, and although airports make me much more anxious than before, I have found that booking a wheelchair definitely limits some of the anxiety. Interestingly, I still feel as though I should not be using a wheelchair but my husband always explains my situation to people around and he is there to make sure I can deal with things more easily. Thank goodness for him and his care. My family and friends now know what to expect when they are with me, and are always "on the look-out" for a place for me to sit down if need be. I have found many ways to deal with the day to day frustrations caused by OT and this forum always helps brighten my day(just knowing there are others who share the problems with OT and are willing to discuss how they cope on a daily basis).
Thanks again for sharing and I hope everyone keeps well.
Rae(Kingston, ON, Canada)
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