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

Moderator: gloria

How wonderful to hear from you really has been a long time ...I like you, have not visited the forum for an age ...and after your writing , realize and will do so too ..
Totally understand when you say OT is not at the front of your mind all the time , you just manage it and work round or with it as you live through each day ....Good on you , getting to that place the early days I found you very inspiring ...we bounced off each other and kept in close touch ...was always hoping you would come to NZ for a visit [good golf here] ...its so good to know alls well with you , and I still thank the forum , lovely Gloria , you `the nut` and many others for getting me where I am at ....well revisit my thread ASP ...take care and thank you all ....x DiDi NZ
Di Di wrote: Wed Feb 07, 2018 9:43 pm How wonderful to hear from you ..... ...was always hoping you would come to NZ for a visit [good golf here] ...
x DiDi NZ
Dear Didi - lovely to "hear your voice" too! I might actually travel to HongKong this fall - but that's not even half way! But if I ever come near your part of the world, I promise I'll reach out! :-)

I was thinking this morning, as I shakily made my way to the bathroom (it's always a bit extra hard those first steps out of bed you know) that my post perhaps was too positive and up-beat. But, even though its shaky and unstable it's still manageable somehow, perhaps as I am not afraid of the tremors anymore. I swear at them at times yes, but that doesn't really help!
So as you say Didi - we move around the tremors, adapt and manage and look at what we CAN do, rather than what we cannot.

take care everyone,
the nutty golfer in the north
Yes Golfnut ...I believe we both are where we are because in the early day`s after being diagnose , we asked all the questions , nagged everybody , tried all the suguestions ...worked thru the grief to acceptance ...finally getting to a place where OT fitted into our life , not the other way round ...not trying to sound smug , but after reading your post I realised OT isnt formost in my day anymore .....totally accept there are lots I cant do but happy to accept that ...cause there is lots I still can ...and as I age there`s somethings quite happy to waiver and just enjoy the memories ........Best Wishes all ...take care ...Didi NZ
Update - fall 2018

A few weeks ago I was super brave; I decided to cancel the wheel-chair and manage on my own when flying home from Hong Kong. I had wheelchair assistance on arrival, but felt so silly. The only place I really need it is in security, else I can walk. So I decided to try without going home. My departure was super early in the morning, not a crowded airport and all went well - I managed.

I think that with 8 years experience with OT I'm more relaxed about OT and not so scared anymore, and that helps. It's still difficult at times, horrible at some moments, but 85% of the time I sail by not even thinking about it as I'm so used to adapting. I lean here, sit there, walk over there, wait until there is no one in line aso. Generally it works. And yes, I still play golf!

For those that's read my entire blog, you know I subscribe to the idea that OT in my case is the symptom of somethin else, of emotional trauma. I do not think I can cure my tremors with surgery, I have decided not to dampen them with drugs - but instead work on the underlying trauma to try and reduce the tremors. I've been off medication for years and I do not think I'm much worse. I cope, acept, manage and try to live as best I can.

So for those with a new diagnosis, when life with OT seems hopeless and dark. Know that every OT story looks different, you too might find a way forward, to an almost normal life, it all depends on how severe it is, how you find ways to cope.

So here's a ray of sunlight from a happy golfnut,
not cured, still only 20 sec standing time - but with a good shaky life. :)
Hi Golfnut
Great to hear your positive outlook yet again.
Unfortunately in my case I have not been so lucky and it has progressed quite a lot but i still like to hear positive stories like yours and feel there may be a future after all!
So - time for another update - late spring 2019.
And there isn't much news to tell.... Still no meds, still shaking along, still golfing, still mostly travelling without assistance. I think I'm a little worse now, but I have decided not to think too much about that, just continuing with life and not focusing too much on the issues and problems with OT. I do not want to empower the bad things in my life - but focus on the good.
I have brought my folding chair to a guided city tour - a blessing I remembered it. I have decided not to go to parties where I know everyone will be standing about chatting. I'm reluctant to museums and exhibitions. But that's the main issues actually. At home I just manage - one learns to! So mostly I think life is pretty normal, up's and downs like for us all.
The most dangerous thing is probably when I need to care for my clematis that grows too wide, and instead of asking a friend or a neighbour I brave the ladder.... :o So far so good, haven't fallen yet, but I know I shouldn't and it is stupid to do it.
A very positive thing is a new Facebook group for OT sufferers in Sweden. Search for Orthostatisk Tremor Sverige in Facebook and ask to join, if you are living here in Sweden.

So I end by repeating from my last post. If you are new to OT, I know life seems rather hopeless - but know that with time, you'll have learned to cope. And if you decide not to let OT rule your life - then it'll be quite ok or at least manageable.

Take care,
the nut
I was happy to read your post, BUT - I know for sure climbing a ladder is NOT the thing to do. (Don't be afraid to ask for help!!! Wouldn't you be happy to help someone if they needed it?) Taking such chances is truly a risk to life and limb. I was diagnosed with OT at least two years ago. I am learning slowly but surely what my limitations are. I refuse to get discouraged. For me, the most difficult symptom has become tremors in my arms and hands. Gardening is now out of the question for me, except for planting in hanging flower pots on my rear veranda. (I have the best husband in the world who helps me greatly with everything.) I have to use a Rollator (a four-wheeled walker with brakes and a seat.). I have to have the seat just in case. What I have experienced is that, since I cannot always stay standing because of the tremors, I try to raise one knee and place it on the rollator seat - it helps sometimes, sometimes not. But the seat is always available. (My silly 16-year old cat decided that the seat is for HIM and he is my passenger around the house until I absolutely need to sit down.) I have decided that, in public, I am not the least bit embarrassed to use the rollator and to sit on the seat when necessary. It is certainly NOTHING to be embarrassed about. If you had foot surgery or a fractured leg and had to use crutches or walker, it wouldn't be embarrassing, so it should not be embarrassing to use a rollator. I do believe it takes courage to maintain as much normalcy as possible. DO NOT HESITATE to go to museums and exhibitions. Good luck.
Hi all, a little update from me.
I'm just back from a trip to Italy. No assistance in the airport (I seldom use that when travelling within Europe) but I also booked a more expensive ticket with acccess to the fast-lane track. :-) That's a perfect way for me, as I still have the freedom to move, that the assistance does limit to some extent.

I'm still not using any meds, and everyday life is ok as I've learned to manage most situations.
But I was recently at a function with a cocktail-welcome reception and that was NOT funny. My friends come by me where I sit and I get company but I cannot be where most people are; standing about chatting.
These are the situations where I hotly hate the OT!! (and yes I know about hich chairs and barstools and all other ideas, no such helpful suggestions needed, thanks.) OT does limit life in some situations and it takes a toll.

Else I managed a brief line to enter a museum and most other situations. Sometimes with some discomfort, but not too bad. And frankly, most of the time I even do not think about OT and I'm grateful to have reached that point in life.

Now a friend suggested medical cannabis oil (pls see separate thread) and I wonder if that could be a way forward.

best regards
the nutty golfer
  • 1
  • 9
  • 10
  • 11
  • 12
  • 13
OT Exercises

Hello Jim, So happy you have found a gym/therapy g[…]

"Participate in a support group"

Hi Betty. Glad to hear you are still managing to g[…]