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

Moderator: gloria

Hi! Golfnut: I like your spirit of not letting every "pitfall" that OT can throw at us have the last word. Challenging the situation and working around it has worked for me on many occassions. Thanks as always, Gloria
Dear Golfnut ....totally agree your posting about reminding us about giving it a go even when there has been a set back !!#!!, ........I too still saviour the moment I danced at a wedding after a big failure at a wedding a few months before :) ..... since then a baby has been born and now learning to walk!!...the wonders of magical memories ...

To just give up and put into the `too hard or can`t do` basket ...personally as long as I`m able ,I weigh it all up and find another way of doing things ...often turns out more interesting ...and certainlly enjoy the feeling of achievement .....
For some reason , and it may well be an age thing the things that REALLY are just too hard ...I am not missing at all , almost relieved to say sorry cant manage that .....always good to hear from you , and know you have not fallen off the radar ........................Didi nz
Dear friends,
this weekend I'm going on the second boat-trip to Finland and among the many pleasures of the journey is that I can stand! Let me explain:

Sweden and Norway are separated by the Baltic sea. Between our capitals Stockholm and Helsinki (as well as other harbours for example in the Baltic countries) HUGE ferries cross the sea with people, cars, lorries and even trains on board. Some more cargo oriented - some more cruising like. The big cruise ferries carry almost 3000 passengers and have almost 1000 cabins, 12 decks (including 3 car/lorry decks) several restaurants and a shopping galleria 140m long.. Just to give you an idea of the size. HUGE! The trip across takes about 16 hrs so you go on board late afternoon and wake up on the other side of the sea.

The ferry is of course driven forward by big diesel engines and here comes the amazing thing. When I travelled over last time, in March, the sea was quite calm - no big waves. Thus this huge ship was not being moved from side to side by waves - but ploughed steadily forward. However - not completely rock still of course. No, the engines create a steady vibration in the entire ship... and - I think you're guessing it now...

YES - the vibration in the ship basically counter my own tremors and almost completely eliminates them!!!!
I was stunned when I realised this and kept standing about here and there just to enjoy the feeling!

Now I'm going back to Finland over a long weekend, travelling Thursday and Sunday, visiting friends, playing some golf and also having a business meeting. I go by boat again and it'll be so interesting to see how it works this time. Perhaps the crossing will be more windy - meaning another kind of experience. We'll see and I'll tell you.

But the main thing is that vibrations in the "floor/deck" helped me a lot. :lol:

the nut
Hi! Golfnut: All I can say is WOW! to your experience, Quote: ["the vibration in the ship basically counter my own tremors and almost completely eliminates them!!!! I was stunned when I realised this and kept standing about here and there just to enjoy the feeling!"]

I feel your experience exhibits and could explain a theory I have had these many years that it is the sensors in our Feet need to feel a repetitive message like when we are walking and when we stop walking our legs tremor and there is the need to sit down or start walking again. In your case it was the repetitive vibration...... maybe this is one small possible piece in the OT puzzle. Thanks , Gloria
Hi again - regarding the vibrations (see my earlier post above) my feeling is that this is not about feet receptors, but a simpler physical situation where two waves meet and eminiates one another. Like on a beach where calm water might be found when two waves have crashed together. Or when a positive and a negative = 0.

The ships vibration is a steady hum, barely noticed by "anyone". But to me (or other OT'ers with the same tremor frequence) a big difference. The weather forecast indicate calm sea so I'll be standing about as much as possible for sure.

the nut
Hi golfnut
I am new to this forum and finding fellow OT patient's journies helpful to read about. I first noticed tremors in my legs in January 2009 triggered by a stressful incident at work. I was 40 years old. The tremors increased and in 2014 I travelled to London to see neurologist Dr Peter Bain. He diagnosed Primary Orthostatic Tremor and prescribed Clonazepam 0.5mg daily. This did not help the tremors but I found that walking, swimming and taking magnesium and vitamin D supplements reduce the tremor. I stopped taking Clonazepam because of the brain fog and nausea. I visited a different neurologist last week. He is sending me for a
Oops! I sent that too soon.....the neurologist is sending me for a brain scan on 9 th June. I was also prescribed Gabapentin....on 300mg to start and gradually increase to 900. It's too early to say if this medication is effective as I've only been taking it for a week.
How did your appointment with Dr Bain go? Are you taking any medication for the tremors? Hope you're still enjoying playing golf; being out in the fresh air is a great tonic! Good luck to all OT sufferers. Regards jh782
Hello jh,

I've seen Dr Bain twice now. I'm not on any medication as I've found help the "alternative way" (and I catually saw Dr Bain before and after that).
Not to rehash everything here I kindly suggest that you read what I've written earlier. Perhaps starting on page 6 in this thread and you'll find answers to your questions.

Best of luck,
the nut
Dear OT friends,
long time no writing - sorry. This has been a rather eventful summer on many levels. But let's just jump to the OT situation, yes? :)
Standing in line waiting or in close quarters or waiting to be seated or similar situations especially among un-known people and perhaps with a bit of stress in the air is still hard and painful and shaky and I try to avoid that as much as possible.
But if I may walk in my own pace, stand around as I please, relaxed and calm and comfortable, it works out much better. In such peace-of-mind situations I can manage standing for quite a little bit (meaning minutes not seconds - still not as "normal people" but a lot better than I'm used to for sure.) and my OT is then not really noticed as much.
I used to tell people at once "sorry - but I have OT, please excuse my odd behaviour!!". Now I try not to say anything, unless I really need to. This allows people to meet me, not OT - if you see what I mean. I am grateful that the OT is no longer THE MAIN ISSUE in my life.

I hope you all have had a nice summer (or winter down under),
take care you all,

the golfnut (oh yes, still playing, and with an improved swing as well!)
Finding it harder and harder to get my daily cleaning done in my home and do not have the funds to hire someone on a regular basis to help and family all live out of town, does anyone have any suggestions? Is there anything out there that there are services to help, I myself do not know of any and would appreciate any feedback from someone. Wishing there would be some new things out there , I am not on any pills I think I tried most of them earlier on but nothing helped . I keep myself as busy as possible have tried accupunture many years ago also did try Physical Therapy with no improvement.
Dear OT friends,
thanks to Gloria for putting another Swedish OT member in touch.

I am seldom on this website now so I apologize for not keeping my diary updated. What's happened? Hmmmm....
After a trip to India last fall (amazing trip!! of course with assistance on the flight) I got very inspired about ayurveda. So I have become more vegetarian and I'm trying new spices and recepies as well as getting treatments. It will be interesting to see if the ayurvedic treatments will help with the OT. I'll tell you of course!

I'm actually quite well now as long as I do things I CAN do, which is most things.. apart from any kind of meeting/greeting/standing about chatting. Or being in crowds.. or any of the other stuff we all know so well.
I am still off all meds, have a standing time of around 20-25 sek the first time - then rapidly getting shorter of course. Balance is not so good, seems that is a bit worse after the years of tremors.

But I live with OT without thinking about it very much - just living and adapting. Not giving OT the front page in every situation, it's really not on top of my mind at all. A blessing for sure.

So I can only say that I hope others will also find a way to cope, perhaps find some relief too.

With my very best regards
the nut
Dear Golfnut: Once again I enjoy the spirit that you manage to sustain as a friend with OT..... to quote you...... "just living & adapting" that is the best we all can do! You have a good mental approach to our everyday! Please keep us posted how you are doing with your ayurvedic treatments from your trip to India. I have been going for Chair Yoga sessions for 8 years which is also a gift from ancient India. Yoga does not heal my OT but it does help to reduce stress. Are you still able to play golf? .... Stay in control of your OT as you do and keep us posted. Thanks, Gloria
Dear OT friends,
It’s been an extremely long silence – nothing written here for many moons. The main reason is probably that I do not think so much about OT anymore. It sounds silly perhaps, but after getting used to the problem, managing it, accepting it – I’m not at all as focused on OT as I once was. I’m into my 8th year (or is it 9th?) with OT and I think it’s been fairly stable the last few years.
No longer do I first of all think; Can I do this with my OT – or even worse, as I automatically thought the first years; No use to even consider it, I cannot do anything ‘cause I’ve got OT! Now I think; do I want to do this, do I have time and money and whatever considerations any person might have. And then, sometimes too late, I realise that oooops – not a good idea, this will be a bit problematic due to the tremors. But I cope, or leave, or manage with help. But I rarely consider OT first.

Does this mean all is sunshine and happy days? OF COURSE NOT! But OT is not on my front page every minute of every day.
What do I do then? I travel without assistance most times. I just use my letter from Dr Bain saying I should be helped so that do not have to stand in line and ask if I can board first or use the fast track. Most of the time that works fine, especially within Europe. Transatlantic I use assistance as passport lines can be more difficult then. But I do not step onto a ladder, I do not try to balance (that’s gone), I say no to stand-around-have-a-drink-and-a-chat situations. But most other things I do.
Do I still play golf, oh yes! I use a buggy when I play abroad and at home I have an electric cart with a little stool to sit on when I wait for someone to hit their shot. Works fine for me.
Do I use medicine? No – nothing.

Have the OT worsened or become better? I think that it’s a bit better – probably because I’m used to manage most situations and do not really fuss so much about it. But I also know from experience last summer that intense joy, euphoria, soul-overturning happiness – a proper overdose of endorphins – can reduce my tremors to almost nil and it stayed amazingly well until reality come back – say 2-3 weeks perhaps.
Ah – now you’re curious…. Let’s just say that one of my childhood’s deep emotional traumas got kicked out of my system for a while. Then it’s sort of sneaked back a bit, and tremors also came back.(so my personal view that my tremors are trauma based, got stronger. - read previous notes from me to learn more)
For many this may seem like mumbo-jumbo. Happiness reducing tremors – stupid and fake and lies. And you must think whatever you want. But I know where I am, I know what works for ME, and I strongly believe that we are all different.
I believe some can be cured, some might not be, some might be helped with a new diet, or trauma therapy - others by medication, meditation, surgery … Let’s agree that there is not one single cure, but many things that might be worth trying. OK?

For those that have not read my story from the start - do, I think it may help, give another perspektive, give food for thought. I'm not saying my journey is "THE" one to follow, but I think it's a bit different perhaps, and therefore can inspire in a good way.

With my warmest wishes for a happy, healthy and positive 2018. May OT never dominate or take over our lives.
Take care,
the nut.
  • 1
  • 9
  • 10
  • 11
  • 12
  • 13

> Would this messaging system not be the same a[…]