OT - Experienced over time; the Golfnut story

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Di Di
Posts: 149
Joined: Tue Jan 24, 2012 5:03 am
Location: Wellington, New Zealand

Re: OT - Experienced over time; the Golfnut story

Post by Di Di »

How wonderful to hear from you .....it 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 ...in 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
golfnut
Posts: 192
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time; the Golfnut story

Post by golfnut »

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
Di Di
Posts: 149
Joined: Tue Jan 24, 2012 5:03 am
Location: Wellington, New Zealand

Re: OT - Experienced over time; the Golfnut story

Post by Di Di »

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
golfnut
Posts: 192
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time; the Golfnut story

Post by golfnut »

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. :)
Catherine
Posts: 30
Joined: Mon Nov 17, 2008 3:22 pm
Location: Ireland

Re: OT - Experienced over time; the Golfnut story

Post by Catherine »

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!
golfnut
Posts: 192
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time; the Golfnut story

Post by golfnut »

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
Theresaann
Posts: 68
Joined: Sun Jun 24, 2018 6:43 pm

Re: OT - Experienced over time; the Golfnut story

Post by Theresaann »

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.
golfnut
Posts: 192
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time; the Golfnut story

Post by golfnut »

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
golfnut
Posts: 192
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time; the Golfnut story

Post by golfnut »

OMG!! Has it been a year since I posted last. Time flies..
So what can I tell you.

My tremors have, I think, gotten a little bit worse. But what has really detoriated is my ability to balance and that is a worse problem really. I feel that even walking down regular stairs (or up) I need to have a handrail to feel safe. I stumble more if I happen do walk into something (a hip brushing by a table or a doorpost) - meaning I cannot immediately correct and balance myself. My personal theory is that the balance organisms have "given up" after so many years of tremors.. So I need to be a little bit more careful.

Still not on any medications and most day's I just live and do not think too much about the OT. I'm so used to adapting my behavior that it really feels quite natural. I rarely meet people that see the tremors or difficulties and for that I'm glad - I do not want the OT to define me or my life. But it is of course a problem in many ways, I just choose not to dwell on those situations - just manage them.

My new neurologist have made me go though many tests. An EMG (and that was long and not very pleasant), and MRT and also a scinitigraphy or gamma scan as well. So far I've not gotten any results - but it will be interesting to see going forward.

I hope all of you are ok,
take care - keep distance and stay safe.
/the nut
golfnut
Posts: 192
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time; the Golfnut story

Post by golfnut »

Oh dear - yet more years have passed.
But the golfnut is still here. Still golfing, still working, still medicine free... still coping.

Easy - nope. But manageable. Some things are infuriatingly difficult, some things I just have had to give up - but mostly it's ok.

How are you all, new and old friends in the community?
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: OT - Experienced over time; the Golfnut story

Post by Betty »

Hello Golfnut,

It has been years since I have posted and as many years since I have read any of your postings. I received a notification something I was watching had been posted so I checked, and it was you. It had been so long since I read anything from you, I started at the first and read to the end. I remember when you first started your diary; it was a joy to read all you could do and places you would travel playing golf along the way.

You had just been diagnosed and things weren't too bad at that point. I couldn't believe all the things you were able to do and with no medication. You were playing golf often and still enjoying it. I played my last game of golf in 2005, but still enjoy watching. My OT got worse over a long period of time. I have had it since about 1994. I wish I had kept a diary like you did so I could go back and read how I progressed.

You seem to have the ability to disregard your OT and do the things you want. I have a very strong mind (many would say stubborn, and that's true too) but I have gotten to the point I can no longer disregard what is happening to my body. The minute I try to stand, my whole body starts to tremor, my legs get very weak, and I must sit down again. I use my walker all the time but use it as a wheelchair rather than a walker. I can still drive, because as you know, when sitting, we don't tremor, but when I get to my destination, I am unable to walk into any location ~ was hard to accept ~ but we learn pretty quickly there are certain things over which we have no control, and this is one of them. At this point my husband must drive me to appointments and help me inside; not the way I planned things, but this is the way they are. He is a sweetheart! I do take one medication ~ Klonopin ~ 1 mg 3x's daily. I'm not sure it really helps, but I continue to take it. I would not stop without the okay from my doctor.

I accepted my condition (OT) years ago and have moved on with little looking back. I hope this hasn't been too negative; that was not my intent. I only wanted to write how OT has affected by life. It certainly is a life changer.

I look forward to your next post.

Betty in Florida
Mcrevier
Posts: 1
Joined: Fri Jul 28, 2023 1:25 pm

Re: OT - Experienced over time; the Golfnut story

Post by Mcrevier »

This is Mark. I am also a golf nut and I have recently been diagnosed with OT.

My story really starts with Army Basic Training back in 1971.

I injured by back ( disc injury ) and for the next 26 years was able to get through the day and enjoy my life even with pain that went from my left hip to my left foot. In 1996 I had to have surgery to remove what was left of that damaged disc. While the pain down my left leg went away, I did have some minimal drop foot in my left foot. Fast forward to August 2022 when I had a triple laminectomy to relieve back pain that I had as a result of spinal stenosis. This was also the result of the original injury in 1971 as well as the scar tissue from the surgery in 1996.

The reason that I note this history is that up until recently the issues that I have had for the past five years or so with not being able to stand in one place for any length of time ( cocktail parties and buffet lines were, and still are, my worst nightmare !! ) were assumed to be directly related to my back issues. Post surgery last August I was better than I had been, but certainly not anywhere near back to “normal” when it comes to standing in one place.

My wife looked into these symptoms on the internet and found information re OT. Then another friend of ours, who has the same issues with standing was diagnosed with OT. Since my surgery last August didn’t resolve the issues that I have with standing and given the fact that everything I read about issues that others have with all of this seemed to point to OT as the real issue that I have we suggested that my neurologist should consider OT as being the root cause of my issues with standing.

So, last week when I had my routine checkup with my neurologist, he agreed that the issues which I have are consistent with OT.

I have all of the golf related issues that have been noted. I can’t stand on the tee box or the putty green for any length of time. Using the golf clubs to brace myself helps a lot, but I do tell the people that I play with that I just can’t stand around and that they should not think that I am being rude when I sit in the golf cart while they tee off, or while they are putting.

One question that I have is if anyone else had a traumatic brain injury prior to having issues with standing ? Back in November 2018 I fell and split my head open, broke my nose and cracked two discs in my neck. I have felt that since then my balance is not what it use to be. Now I think that the fall also was the start of my issues with OT.

So that is my story.

Mark
golfnut
Posts: 192
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time; the Golfnut story

Post by golfnut »

Dear Betty, I'm so sorry I reply so late - but I'm very happy to read you message! Lovely to hear from you!
And Mcrevier - a fellow golfer, happy to meet you too!

So what can I tell you this October Tuesday 2023? Well, first frost on the lawn this sunny morning in Stockholm Sweden, and sunshine, crisp air and colorful nature does lift the spirit a bit!

I'm still golfing (but not for long this year as the season ends about now) and as we normally walk the course here, I have an electric trolley with a little stool/seat that I sit on. This gets me closer to my friends as I can bring the seat to the fore green even, or the teebox edge, and take part in the chat and heckling of bad shots. :D I do prefer this than to sit in a buggy away from it all. And when someone remarks on me having the seat I normally don't elaborate why, I just say it's super handy and if they want they can rent it per the minute. LOL

Always fun and easy in my life - heavens no. I'm furious when putts go astray because I tremble so much that I cannot put straight. And I cannot really practice anymore. But I try to look at the positives, I can still be out there..

One very positive thing for us OT'ers in Sweden/Scandinavia is a new study currently ongoing. Many of us participate and try to help by taking part in various exams and trials. Balance, gait, perception aso. It's all very interesting! As a bonus we've set up a little community so that we can support each other. A local alternative to this international forum. We all need the support from our fellow OT'ers, that's for sure.

So, me? Still no meds on a regular basis. Sometimes I try a beta blocker, but I'm not sure what they do for me. I should try it more I guess. My balance is worse, and the tremors too. Using walking poles is a help (and good for you) especially if I venture out on paths or even the woods. I did bring something to sit on and my poles and a basket at picked mushrooms! Hurray, hadn't done that in ages, but we have so much mushrooms this year that you can sit in one place and pick a basket full! Amazing.

Anyway - hoping to give some hope and cheer, to myself while I write and to you who read. We cope. Somehow. Yes?
golfnut
Posts: 192
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time; the Golfnut story

Post by golfnut »

Mcrevier wrote: Tue Aug 01, 2023 2:48 pm This is Mark. I am also a golf nut and I have recently been diagnosed with OT.

...................
One question that I have is if anyone else had a traumatic brain injury prior to having issues with standing ? Back in November 2018 I fell and split my head open, broke my nose and cracked two discs in my neck. I have felt that since then my balance is not what it use to be. Now I think that the fall also was the start of my issues with OT.

So that is my story.

Mark
Mark,
I've wondered about trauma, both emotional and medical. I did have my head banged up a bit in a car accident when I was about 15... And I've also had the notion that suppressed fear/anxiety might be a factor.. But, as far as I know - no one really knows why and where..
I also sense there are so many different stories, and progressions that comparisons are difficult.

Thank you for sharing your story,
/the nut /Anne
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