OT - Experienced over time; the Golfnut story

[golfnut]

Dear all.
EDIT OF FIRST POSTING AND SMALL CHANGE OF TITLE OF THREAD
MADE June 27th 2012 -
This thread started out with one intention as can be seen below which was and is very
interesting - how OT progresses. But my thread then became more of "the golfnut's diary"!
It's nice to be able to look back and see what happened and how I felt..
I recommend the idea, to create your own "diary thread" - it's helpt me a LOT; all the kind
input and responses and also the ability to recall things I've forgotten.. So from timeline to
diary - a change in title and an explanation for those (anyone??) reading from the very start!
So - end of edit and back to the original first posting (that in itself signal a new start - how
confusing!! ) :

ORIGINAL START:
I would like to re-start the thread about the OT timeline and I hope you will help. Several of you were kind to describe your situation in a thread similar to this, that then vanished. I now kindly ask for old and new contributions.

The idea is to tell our story and to get some kind of time-line attached. I found it extremely helful to be able to read about how OT has developed over the years for others, being new to OT myself and fairly scared about the future. Knowing that someone was mildly affected for 6 years, then worse for 4 and severe problems the last 2 years as an example - put's things in perspective. Please try to detail years as best you can for this reason. Also important is to know if you are affected by OT alone, or by other things as well - you need not tell much, just so that readers can understand and in some sense compare situations (that cannot be compared in reality, but it is a small step forward).

Perhaps this material can also be of use to doctors and researchers, giving input and suggestions for studies. One can always hope. I'll put my own timeline story in a separate entry...

the golfnut

[golfnut]

Anne, the golfnut is living in Sweden, almost 50 years old and this is my story.

I was diagnosed in December 2009 after having visible tremors in the legs for a couple of months. Luckily I was sent almost immediately to a neurologist who diagnosed OT. At that time I had problems in everyday situations such as shower, waiting for the train, washing up, putting on make-up - you know. I had to lean on something - or shake/tremble in the legs. It was problematic, and also interesting to realise how much you actually stand still every day!

Thinking back I believe I've had OT for 3-4 years prior to the "escalation". I recall having a tendency to prefer to sit if a possibility was there, sort of being a bit lazy. Or leaning on something. Not due to tremors or dizziness, more like a mild discomfort - the legs telling you "why not sit down over there - looks nice!" Then late last summer I realised I was sometimes trembling when putting on the golf course... strange! And then, at a wedding in October, the situation was alarming as I started trembling and then almost shaking as we stood talking with other guests - almost spilled the bubbly!!
At that time I became scared. Parkinson? ALS??? It was good to find OT..

The feeling before I started on medication was similar to discomfort - perhaps like to kind you might have after a workout when the muscles are tired the day after? Tests showed 18-20 mhz standing tremors, less when leaning on something and almost none while sitting. I understood from the test that even if leaning makes me feel ok, the muscles are still trembling. So, tired legs are not surprising!

Today I take three pills each day of "Ergenyl" whose active item is Valproic acid (perhaps called Depakene in US?). This helps a lot! Today I have no sense of OT in my everyday life as long as I do not stand still for long. My standing time has increased from 20 seconds to almost a minute or more which often is enough. Discussing with the neighbour meant leaning on her letterbox though! I look forward to the golfing season and to see how this will work - quick pre-shot routines are a must! I walk every day - but I feel I'm more tired in the legs than last spring; medication or OT? Who knows. (I have no other medical problems)

So - 3-4 years with no visible/concious problems. Then in 6 months a sudden appearence of visible OT. Now in check by Ergenyl and the story will continue.

Take care!
the golfnut (excuse spelling and English errors!)

[Kathy F]

Hi Everyone,
I had posted my story a while ago, but as Anne said some of them have been lost.

So, here it is again.......
I started noticing the shaking in my legs about 9 years ago. I had thrown my back out from coughing and it seems from then on is when I had started noticing my shaking legs. I thought maybe it was something unrelated and was diagnosed with diabetes in 2002. I asked my endocrinologist if it could be related. It wasn't anything they could come up with. I went to a neurologist in 2006 and while I was waiting for MRI results and a follow up appointment with my neurologist, I started searching the web for answers. It was here where I found my answer! I couldn't believe that others were having the same problem. I had expected the doctor to tell me some problem due from my throwing my back out or maybe from some other medication that I have been taking. When I went back to the doctor, I was the one that told him what I had and he agreed. He had gone to some seminar not long before seeing me and had given me the details of a woman that ended up in a wheelchair and shaking all over. I didn't need that vivid detailed response. He told me I could try medication and that it may help for a while. I decided to wait.

I also have a genetic disease called cystic fibrosis (CF). It affects mostly the digestion, pancreas, and lungs. It is the lung complications that people die from. I'm out living the life expectancy for that and keeping things maintained. I had asked around the CF group if anyone had similar problems with shaking and no one that I know of has said this is a problem for them. I thought maybe with all the medication that I have to take for CF that maybe one of them had caused this problem over long time use. I have noticed that certain antibiotics will make the shaking a lot worse.

As Gloria has pointed out, there isn't anything yet that has been a clear cut explanation for us having these shakes and tremors. I know that my shaking has progressed and is now affecting my arms. I had heard from another OT patient that he has noticed more shaking when he is stressed, cold, or anxious. I have noticed that too. Also when my blood sugar gets low, I notice my shaking is magnified.

Well, before this gets too lengthy, I'll leave this for now. I hope others will share their experiences, too.

All the best and just know that we all have to tap into our creative side to deal with this and hopefully come up with answers.

Blessings,
Kathy (Las Vegas, NV)

[golfnut]

Thank's Kathy for sharing!

I was reminded today to go back to the "front page" of the OT site, and visit the "visitors-pages". The testimonials there are also very interesting when it comes to progress, various difficulties and sharing OT stories. I find it important for me to learn from others, so that I have an idea about what might come along.


I was invited this afternoon to a business function - looking at pictures, speaking with the artists and sipping a glass of white wine. Very interesting and some really nice work (wish I had "bucks" to spare!). And it was manageable. but a bit tricky. I found a chair in one room and then I leaned on walls - too near the pictures and probably in the way! But I tried it, went there and experienced the situation. Now I know I can manage... in a way.

Take care,
the golfnut in Sweden

[golfnut]

Latest news from the golfnut:

golfing is good! I just need to concentrate on being efficient and sitting down as much as possible on my little stool. No standing and sleeping over the ball, considering possible strokes/lines on the green. Just make a quick decision and hit it! Everyone is being very accepting and kind when I tell I cannot be as helpful as before/as usual on green or tee as I need to sit as much as possible. Many golfers that I play with and do not know me, get their courage up around the 17th hole or so and ask what ails me. They express relieve to hear that I have not ALS,MS or Parkinson - which indeed put's OT in perspective. Yes, it's a hardship but it will not kill me!

My medication is working very well. I can now stand for a minute or more (20 sek before). But, my leg muscles are becoming harder and sometimes aches quite much when I walk, especially the calves and in the beginning of the walk. It loosens up and the pain is reduced after 15 minutes or so. It's good that the morning walk takes 40 minutes!
I will be seeing a neurology trained physiotherapist soon and it will be interesting to hear what he/she says.

The professors I am in contact with are kind and helpful, but it is very obvious that OT is not on anyones agenda here. No research and very little knowledge. I also find it a bit complicated that OT on this excellent site so often are related to other illnesses. I sometimes feel alone in "just" having OT as many postings, despite being of interest, does not help or relate to me.

Anyway - I'll keep on writing in my "diary" here. And I welcome anyone who wants to share their situation.

Take care,
the golfnut

[Lake of the Woods]

Hello Anne,
My suggestion is that you think seriously about coming over to the meeting we are planning in October for OT people. We had one 2 1/2 yrs ago and my hope is that we can have one every 2-3 yrs. The best thing is to talk to other people with this problem - there really is nothing that helps better in my opinion. Plus, if we can get people to pull together and get some kind of organization it will help for the future.

Peggy

[golfnut]

A day of gardening.

Yesterday I decided to work from home. This meant I could keep an eye on the computer and phone, but basically spend the whole day in my little garden. Luxury on a sunny and warm day!!

What I took on was a huge shrubbery with various bushes. Many of them had more dead branches than alive ones, the winter has taken it's toll. I imagined that the hours spent sitting on a chair cutting the branches into small pieces in plastic sacks in order to take them away would have been the main muscular problem today. I thought my right hand and arm would have ached a LOT today.
But no. Upper thighs and upper buttocks - especially the latter - aches immensely! Apparently standing bent forward, leaning into the bushes to cut off the dead branches was a huge effort for these parts. I managed fine, trembling a bit, but I was moving around, changing position, reaching for the next branch so I didn't feel too bad. Also most of the time was spent sitting as described.
However - I believe that even if I do not feel the trembles, the muscles are working so very hard with their fine trembles (18-20 hz registered for me) that they are completely exhausted today. An interesting experience.
It seems, seen from the funny side of life, that these tremors can be used as muscle training! You know these electrical stimulators they want you to buy to get muscle toning without doing anything at all? Well - OT works the same!

Next week I have a meeting with a physioterapist - let's see what she has to say about it all. She knows nothing of OT but has patients with various other spastic muscle problems...

To be continued.
the golfnut (I'm playing a small club tournament Saturday on our Club's Queens course. The tournament is called Queen Victoria and after we'll all watch the Crown Princess' wedding on TV! Standing in front of the altar... )

[MaureenB]

Yesterday was wonderful in England and I too enjoyed gardening,as the weather was beautiful i did not finish my day with wet and muddy track suit bottoms
I must be a little further on with ot, as I am now unable able to stoop and cut back, but i manage to bum around amoungst the bushes, my husband often comes home and calls where are you. although the garden is not over large i manage to creap into crevises , and some times find myself unable to get out with having lost the spring in my legs..
However we must keep going. I must admit I do have down days, but summer is my time I love the sun and as I say to my Grandchildren Nanna is warming her bones.
Happy Gardening
Maureen

[Chris]

This too is my favourite time of year. I love being in my garden. This year we have had a lot more rain than usual and the plants are really enjoying all the moisture. Our climate tends to be quite hot and dry most summers. My husband has constructed lots of walkways through all my perennial bed so I can get in to weed with my little wheeled garden cart. Lately I have been able to hide amongst the delphiniums as everything has grown so enormous. I can only stand for a few seconds to do any garden chores and sometimes lean forward from the cart trying to reach the elusive weed and almost reach too far. I have ended up flat on my face a few times inevitably crushing a few plants. Oh well....at least I can still garden and enjoy being outside.
Take care all and have a happy summer.
Chris

[golfnut]

So - latest news from the golfnut...
I have ordered a used electric trolley for my golf! I have been forced to face a huge loss of stamina compared to last year. The smallest hill/upward slope makes my legs ache very much. I need to sit down and let them get back to normal. So the idea is that not having to push and pull a trolley and have to use leg power to move the trolley forward will help. I hope so. Worth a try - I need to keep in golfing! So trying to save that is very important and a huge "carrot" for everything I do.

As you have perhaps read in the muscle fatigue & weight thread I am also working with a fabulous physiotherapist. She knows nothing of OT, but has a LOT of experience of various other neurological problems and tremors and she has ideas and suggestions that seems very constructive and worth trying.
So I'm on a new drug for the ache in the muscles in order to help them get back a bit to normal from their current owerworked state. I'm working hard on loosing some kg in weight (less burden on the legs, less tremors is an idea we think) and I am "working out" crawling around on the floor every morning doing relaxing and soft movements. And the plan is to increase the movements and excersises later this summer and to get stronger in the rest of the body to help the legs...

I'm also starting a real diary of that I do, how I feel, every day. Perhaps there is some kind of pattern? One will not know unless there are some notes taken over time. Lot's of things, ideas and plans. I hope they will help you too!

sunny greetings
the golfnut

[golfnut]

Trolley news:

the electrical three-wheel trolley is a miracle! Not having to use force or energy to push or pull the trolley makes an immense difference. Today I played 18 holes at a course which is not at all flat parkland, and it went surprisingly well. No aching after a hill, no extreme tiredness. (even the game was ok!
Being able to play almost like before, at least without becoming so extremely tired, is a blessing.

sunshine to you all,
from a very happy golfnut

[Betty]

Hello Anne,

I have enjoyed reading your posts/journal regarding how you are coping with OT. I think that is a wonderful way to share information on how OT affects you. I think most of us can relate to what you are saying.

Also, I am so happy you are able to continue to play golf ~ which you obviously enjoy ~ and have found ways to help with the fatigue we all experience.

I, too, was an avid golfer, but unfortunately am no longer able to play. I think, as I wrote to you, each of us is different and I hope you will be able to continue to play for many, many years to come.

Good luck!

Betty

[golfnut]

Time for an update...

As you know I got a musclerelaxing/painrelieving drug for 2 weeks and that was indeed very nice. Pain free, easier to walk and a lot nicer on the whole. After giving it up I realised that it had helped also by getting the muscles a bit back to normal. The legs were not so overworked and tired. Mission completed.

Now I have had a few weeks vacation. A lot of golf has been played and I have no problems as long as I can rest say once per fairway (easy done as I have a stool on the trolley and I plop down on that while someone else hit their shot) a bit of sitting dowm by the tee (while others tee off) and the pace is not too racey. Two days in a row on wet courses was too tiring though - I felt it and the game went straight down. And the 36 holes per day I used to play seems to be a goner - or, perhaps with a golfcar??
I'm happy anyway as the golfing, so important to me, seems to be finding a way to "survive" despite the OT.

Today was the first office day and I can feel it. I'm tired in the legs again. Strange. I have not walked long today - but perhaps longer in minutes without rest, compared to the golfing walks? As soon as the weather is more stable I'll try my morning walk to the next train station (40 min) just to see how that feels.

Standing in shops, in line and similar is harder now than 6 months ago, but at home I seem to cope better. Perhaps I am so used to lean on something all the time that I do no realise I do it here at home?

take care everyone!

[owen-lynettepickles]

Hi Golfnut
I can relate to some of your experiences. When we were on holiday in South Africa for a month late last year, my legs were very good. We walked quite some distances and as long as I got to sit down after, I found my legs were not so tired. We also thought the warmer climate might also have helped. The only time I had any real problem was when I tried to dance at a wedding we attended. I danced for one music number, but found that my husband then had to support me back to a chair to sit down - result, no more dancing!!

Once we returned and I got back to work I once again experienced tired legs and found I needed to lean on something much more, despite the fact that I am sitting more than standing. Perhaps it is the transition from sitting to standing so much that is the tiring part. I also believe that there is more mental fatigue while working, compared to being on holiday, and that probably generates tired, wobbly legs.

Enjoy your golf. We're hanging out for summer and some warmth instead of the cold, damp, dreary days of winter.

Regards, Lynette

[golfnut]

So - the situation has of course changed since the last time I wrote. Some things have become worse, but an increased dose of medication that I started taking a few weeks ago put tremors back to where they were in September - almost. (sometimes I can stand 30 sek before they start - sometimes 45-60 sek. It seems very much to depend on what I have done the minutes before)
I now experience tremors also in the lower arms and hands at times, often when the legs are tired out. It seems as the tremors then are built up inside the body and spill out where they can! But the everyday situation is what it is - you just have to cope and learn what needs to be considered.

The good news is that I have an appointment with Dr Bain in London quite soon. I do look forward to meeting a person who has more experience of OT than any of the professors have here. The population is simply so small in my country that with a very rare condition, there are even less patients to look at. I hope to be able to discuss the progress and the medication aso with him. I look forward to the meeting very much.

take care everyone,
best regards
the Golfnut