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

Moderator: gloria

By LMP1
#4201
Hello Golfnut
It was great to read your post about meeting up with another Swedish OTer. I'm sure that you could offer her a lot of advice since you have been able to get on top of the trials and tribulations of OT and it would have been very heartening for you to realise how far that you have come. Long may it continue for you.
Cheers from a freezing cold top of the south, New Zealand.
Lynette
#4202
Hello Golfnut: It is always good to read an update from you and how OT is not in control of your days. I wonder if our new Swedish member that you have met will be able to follow your means of treating OT and then we will have a second persons response to compare . My best wishes to you always , Gloria
#4203
Dear Gloria,
I will try to assist her in getting in touch with a local neurologist that knows about OT - that is a first step. She has been given my "full story" and contacts and links. But which way she will move forward, only time will tell.

I'm on vacation - sitting at a golfclub writing this awaiting my friends to first have lunch and then golf. I'm using a buggy as I have not brought my electric cart on this trip.
The summer swim in a lake this week proved difficult - balancing on a stony beach while trying to cope with rather cold water became impossible. Tremors set in and I just had to back up and stay warm and sweaty.. But yesterday a ladder from wooden structure made it possible to swim in the sea. Absolutely wonderful!!

Wishing you all a nice summertime,
the nutty one
#4209
golfnut, please tell me how you arrived at a place where you recollect the awfulness of OT? and no longer live without it being the over riding element in your life?

I am searching your posts

Thanks

Moira
#4218
Hello Moira "down under" - greetings from "up here" on the other side of the globe.
:)

My best, but rather shamefaced, answer would be to start reading at the very beginning of my thread... So much has happened since I was diagnosed 2010. I am on a journey so to speak where many factors have helped along the way; some more than others.

If I recall correctly I posted about the major change during spring 2013 or so - to jump to page 6 and start there might be an idea.. :)

The bottom line is that it is true that I had a standing time of 4-5 seconds when tremors were at their worst, quite awful.
Now I'm rarely bothered by them, on no meds and most of the day I do not think about OT at all..

It's Amazing.

sunny summer greetings,
the nut
#4220
Dear Nut.....just had to share your frustration of not been able to manage walking into and out of the sea or lake, that I think for me is one of my few `poor me ` moments .
There seems to be no way of doing it , what do you do with you stick once you are up to your thighs and able to then float out .. :) :(.... great when there is a low jetty and steps....still a mission,but at least gives you a better chance to swim.
Im still avoiding small boats , no way I can programe my brain into stepping over that gap from jetty to boat even with strong arms to help ..................OT has a mind of it`s own .....love reading your thread as does others xx.......Didi NZ..
#4245
So....
I've taken a huge bite out of the humble pie (hope this is the right expression!) and asked for assistance on my flight to USA. I've travelled in Europe without assistance at airports and it works very well, I just ask to pass the line/queue or travel with SAS plus that includes priority boarding = less waiting to get to the seat.
But the idea of US immigration is so scary I've asked for assistance. I hope it will be ok.. but I'm dreading it a bit. Not visiting the OT meeding, going to San Francisco and Chicago, part work, part leisure. The trip by train from SF to Chicago will be fun!

I'm doing better again. I think that my Mother going into a home with her alzheimer released a lot of stress and worry = the tremors are better. Being boring and repetitive :) - but still no medication and no major problems.. but I'm asking my neighbors for help with hanging the new curtains - no standing on ladders.

Take care everyone,
the golfnut ( who just bought a new Titelist driver - Boooom! :) )
#4250
Golfnut: Sorry that we will not see at our OT meeting but understand why that will not be doable. It is also understandable that your mother being in a home for the care of her Alzheimer has reduced your your stress. Any kind of stress is one of the biggest triggers of our tremors. However I'm very jealous that you have purchased a new Titleist driver.............. it has been many years now that I have had one in my hands. Have you ever had a hole-in-one ? I had one in my golf history.

Hope your trip and golfing is great....keep us posted, Gloria
By Nin
#4251
I've gone through Customs with assistance both going to and coming from Europe and can't recommend it enough! Not only do you get to skip impossibly long lines, but the people who push the wheel chair know exactly what is needed at each stop, would tell me exactly what to have ready and would then take it up to whomever needed it. If you're flying into Chicago, you'll be especially happy with it because it's a long walk from where you land to Customs. I hated it even when I wasn't shaking with OT. Hope you enjoy your stay!

Ah, I see you're flying INTO San Francisco, not Chicago. I'm sure it will still work well. :)
#4335
Dear friends,
two weeks in US are over and I'm back at my desk in Stockholm and it's time for a small report.

Regarding travels:
I had assistance booked and used it in airports, but will try to manage on my own next time. I know it will be hard, but waiting nervously for the assistance to come along (was almost forgotten twice on this trip), not being able to shop or have a look at things... No - I'll use my cane (for show) and wave my medical assistance paper and politely ask to be allowed to use any available express or speedy lanes and see how that works. As I'm fairly ok now, I think it's worth a try also in places where security can be difficult. The advantages will, I think, measure up to the disadvantage.

I managed mostly very well during the conference and festivities. But some lessons learned:
Making a presentation; next time I do need a high chair to sit on. I expected to manage by holding on to the stand as I just had to speak for 5-10 minutes but that didn't work. Very shaky and painful.. :cry:
Cocktail receptions. I hate them. Everyone standing around chatting, people hugging and saying hi - and I have to run away to sit down all the time.. well - it just has to be endured. many people know about the situation now as well - but it is, indeed, the nightmare of these occasions.
And Dancing. I finally tried and yes, quick things are ok, but slow dancing is a no no... And I love to dance. Very sad.

But apart from this all went fine; sightseeing, seminars and meetings (re-elected to the Board, very proud). Also a great train trip from San Francisco to Chicago; 2.5 days of sitting by the window, admiring the view, with a sleeping compartment and good food. This is truly OT manageable and highly recommended!

Take care everyone!
your nut, playing golf tomorrow...
#4337
Hello Golfnut

Thanks for the "run down" on your trip to the States. Like you, I decided not to use wheelchair assistance after a 'trial run' during our last trip to that country. I was grateful for the assistance when we first arrived in San Francisco after a 12 hour flight, but once at the hotel and I could get my legs moving again, I never used assistance again, despite several flights before our return home.

Cocktail functions are also a trial. As you say standing talking, people moving round you, hugging etc really pushes all the wrong buttons for us and, like you, all I want to do is hide away in a corner on a chair. I stayed away from the dance floor (we were at a wedding), although the groom's father did get me up for a dance in the dining area, away from everyone else!!

Train travel is certainly a relaxing way to go (we did it in Canada), but have to remember not to eat too much of the very tempting food on offer.

Congratulations on your re-election and enjoy your golf.
Regards, Lynette
#4500
Dear OT friends,
best wishes to all for a happy and healthy 2015.

I've been off the forum for a bit, many other things has happened and I have simply "not had time for OT". I've travelled to London, met with clients, went to a Christmas party and then things have happened in my family that has meant a lot of changes. Anyway - the OT is still here, kicking in now and then, but very manageable. As long as I am not too tired or stressed, I rarely think about it. It seems to be part of life, and not too much a nuisance.

I have decided to change my diet for a period of time and I'll be walking the paleo-road for some weeks and see what this might do for me and my body. Basically I'm stopping all grains and grain related products as well as peas, beans and lentils and instead leaning on roots, vegetables and nuts for the carbs instead. This diet has been mentioned here on the forum over a year ago I think when someone had a lot of improvement from a diet change. I will keep you posted and let you know what I experience.

best wishes to all,
the nut
#4570
Dear all,

in September 2014 I wrote among "lessons learned" that dancing was a problem. Behind those words is a rather sad story where I basically had to scramble off the floor after an embarrassinlgy tremorous and hopeless dance. The person I danced with was not a dancer at all, and just swaying to and fro without movement was gruesome.
Im sure you understand my distress at the moment , and the sadness and also the reluctance to try again.

But a week ago I was invited to a huge party with dancing. And I decided to give it another try. And this time I was lucky - I found myself in the arms of a DANCER and we turned and twirled around the floor! I had so much fun, it was truly a very happy moment!! I managed two dances and I'm smiling just writing about it.

I think that we too often do not give things a second try. If we fail once, we put it on the "impossible"-list at once. But that is often a mistake. If we try again, we might have a better chance! I think our "cannot-lists" are growing too quickly...

So - give yourselves another chance at something you have felt is impossible. Who knows, that day - at that new moment - it might work!

Your golfnut.
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