Search found 177 matches

by golfnut
Wed Oct 28, 2020 9:25 am
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: OT - Experienced over time; the Golfnut story
Replies: 188
Views: 27716

Re: OT - Experienced over time; the Golfnut story

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 ha...
by golfnut
Mon Mar 30, 2020 5:00 am
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: Possible Breakthrough Experienced by OT Patient
Replies: 4
Views: 11068

Re: Possible Breakthrough Experienced by OT Patient

I'm in contact with my neurologist here in Sweden at the moment for a check-up. I'll mention Leflunomide to them and see what he says. Very interesting, thanks for sharing!

/the golfnut
by golfnut
Mon Mar 30, 2020 4:55 am
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: Muscle fatigue - muscle deterioration - exercising
Replies: 14
Views: 3105

Re: Muscle fatigue - muscle deterioration - exercising

Hi everyone and many thanks for all the input on muscles and how we cope. Regarding cruises : I have felt that the vibration in the ship from the engines actually resonates with my own tremors. On the huge cruiseships between Sweden and Finland I CAN STAND!! First time I went, I wept with joy. It's ...
by golfnut
Mon Oct 14, 2019 2:03 am
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: Muscle fatigue - muscle deterioration - exercising
Replies: 14
Views: 3105

Muscle fatigue - muscle deterioration - exercising

Hi all, after 10+ years with OT I've had a new, and not so positive thought. Is muscle deteoriation another important side effect? As standing is near impossible for more than seconds – working out in an upright position is very hard. A lot of leg-work is done from a standing position, especially th...
by golfnut
Sun Oct 06, 2019 6:14 am
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: OT - Experienced over time; the Golfnut story
Replies: 188
Views: 27716

Re: OT - Experienced over time; the Golfnut story

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, tha...
by golfnut
Sun Oct 06, 2019 6:04 am
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: Cannibis Oil
Replies: 5
Views: 1488

Re: Cannibis Oil

Hello all, I'd like to bring this thread back to life. I'm wondering if anyone is using CBD oil for OT tremors? Here in Sweden it is illegal if it contains ANY trace of THC. But I've also read about a prescription drug with CBD and THC that is used to help MS-patients with muscle spasms. I'm going t...
by golfnut
Sat Jun 29, 2019 2:45 am
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: Angela Merkel (DE) and OT
Replies: 10
Views: 1364

Angela Merkel (DE) and OT

Media articles report about Mrs Merkels tremors and I've seen one of the videos where she's standing and having severe tremors. One article mentioned OT - and it sure looks like it to me. While I regret her situation I'm hoping she will tell the workd what ails her and it it is OT, that would mean a...
by golfnut
Sat Jun 01, 2019 2:52 am
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: Fainting
Replies: 6
Views: 435

Re: Fainting

Hi. My balance has been lost due to many years with OT. I sense instability a lot, but I would not call it dizzyness or fainting. More as a gentle reminder to move or sit down. Another thought - but this might be completely nuts... is that if the tremors are severe, and the brain is trying to cope w...
by golfnut
Wed May 29, 2019 1:50 am
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: New to the forum? post a quick introduction
Replies: 1000
Views: 127343

Re: New to the forum? post a quick introduction

Hi all, not new to the forum but a longterm member. My entire story is posted in a separate thread "The Golfnut Story" so if you have a rainy day and nothing to do, you might find that interesting. I write here now to add some input to newer members. I think took about 2 years, after my diagnosis so...
by golfnut
Wed May 29, 2019 1:31 am
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: OT - Experienced over time; the Golfnut story
Replies: 188
Views: 27716

Re: OT - Experienced over time; the Golfnut story

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...
by golfnut
Mon Sep 10, 2018 9:28 am
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: OT - Experienced over time; the Golfnut story
Replies: 188
Views: 27716

Re: OT - Experienced over time; the Golfnut story

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 goin...
by golfnut
Thu Feb 08, 2018 6:05 am
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: OT - Experienced over time; the Golfnut story
Replies: 188
Views: 27716

Re: OT - Experienced over time; the Golfnut story

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 prom...
by golfnut
Wed Feb 07, 2018 1:46 pm
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: How is everyone?
Replies: 719
Views: 98002

Re: How is everyone?

The Golfnut is back for a little update. All is well actually. Medicine free, coping with most things - not letting OT take the lead in my life. Standing time - 12 seconds perhaps? Not really counted, some times it feels longer, sometimes like 5 sec. But if I lean on something I can stand longer of ...
by golfnut
Wed Feb 07, 2018 1:41 pm
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: OT - Experienced over time; the Golfnut story
Replies: 188
Views: 27716

Re: OT - Experienced over time; the Golfnut story

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 ...
by golfnut
Tue Apr 26, 2016 9:17 am
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: Is anyone still employed full time?
Replies: 7
Views: 1193

Re: Is anyone still employed full time?

Hi there, I'm still running my own company so I can safely say I'm working more than full time. :P I'm sorry for your loss and then the OT on top of that. Perhaps there is a connection? (Emotional) Trauma seems to be a cause for some of us. It's the hardest time just after diagnose I think - at leas...

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