OT - Experienced over time; the Golfnut story

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Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: OT - Experienced over time

Post by Betty »

Hi Anne,

I think all of us must try many medications before we find one which seems to help control our tremors. If Gabapentin is the one you are trying now; that seems to be the one which helps many people most. I hope this is the case for you.

I have, as I have said before, tried a 'laundry list' of medications and since I am very sensitive to most medications, I am unable to tolerate Gabapentin. I have tried it twice, no luck, too many ill effects for me. I was put on Klonopin (clonazepam), have taken that for years, but am trying to get off that one as well. I was taking 2 mgs. twice a day and am now down to 1 mg., 1/2 tablet in the a.m. and 1/2 tablet in the p.m.

I do know my tremors are worse without the medication, but I would would rather cope with the tremors than the side effects. I think we all must do what we feel is best for us and not worry about what others 'might' think. This is your life; live it with as much gusto as possible.

Regarding using a cane; I have one in my car, but only use it when I am having a really bad day. It doesn't help; but as you said, it does make others aware I have a problem and they are more helpful, opening doors for me, giving me more room and not being so impatient.

I have only done mild cleaning for some time now; I must have someone come in every other week to do the 'heavy' things. I can, and do, sit when cleaning my tile bathroom floor. But....I don't do that very often because once I get down, it is very difficult for me to get back up ~ especially on a wet, tile floor....scary!

Living in Florida, we don't experience snow, but it must be beautiful. However, having lived in places where it did snow; I would much rather SEE it in pictures than experience it. Don't you find it scary trying to walk in the snow and ice?

Well, keep up the reporting; we are interested in how things are working for you.

Betty
Joan Ryan
Posts: 2
Joined: Tue Jan 18, 2011 10:22 am

Re: OT - Experienced over time

Post by Joan Ryan »

This is my 2nd time sharing my experiences. I am now 60 and first noticed my legs trembling while standing at a graveside at the age of 43 and gradually over a year I noticed the I was getting worse. I play lawn bowls and found I coud not stand around still while others bowled and the realised I had what my father has. He developed it at about the age of sixty and had to go to London to be diagnosed. I have been on a number of drugs to no avail. I have almost always been on Clonzapan in certain dosages and sometimes with something else. I tried coming off it as I really enjoy a drink and the effect the next day is awful. I have experienced many drugs as I have seen a number of neurologists but can't find anything that allows me to stand for more than 30 seconds without having trouble taking the first 10 steps and then find something to lean on before walking away without looking drunk! I'm not alcohol dependent but enjoy a couple of glasses 2/3 times a week.
Has anybody thought of the brain implant or even had it? Any ideas on it?
Nothing helped my father who is now 89 and can't walk at all. Up to about 5 years ago he could get around the house in his own style. Doctors don't know if it is hereditory but certainly our symtoms are the same. I would love to get back to bowls if I could just stand long enough to deliver the bowl, 3 years without bowling, I hope not another 3 before I play again.
Everybody that has written could have taken the words from me. I know there is worse than OT but that's what I have and that is what is relevant to me.
Thanks for all information.
Joan
Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: OT - Experienced over time

Post by Betty »

Hello Joan,

I may have missed your first post; so I thought I would give some of my thoughts here.
You indicated your father also has OT and was diagnosed in London. Have you thought of trying to see Dr. Bain, whom I understand is in London? He is supposed to be excellent.

Your symptoms do sound like all who have OT; we are the same, yet often just a bit different.
Regarding your bowling, I understand what you are saying about not being able to stand waiting for others to bowl. I used to play golf and loved it; but I am no longer able to play. I played my last game in 2005.

Do you find standing is the only problem with your bowling? Do you not have any problems with your balance while bowling? If no balance problems, then perhaps you could get a chair (one of the folding cane/chairs) to use while bowling. That might help you.

I also take Clonazapam (Klonopin), but am trying to lower my dosage. I don't like the side effects.
I am taking one ~ 2mg tablet daily ~ 1/2 tablet in the a.m. and 1/2 tablet in the p.m. I do notice my tremors are worse, but less side effects; so I am coping with more severe tremors.

Reading you can only stand for about 30 seconds without having trouble taking the first few steps; I think we can all relate to that. Most of us refer to that as "freezing". The legs just will not move, it is difficult to get started in a forward motion, and our gait is very awkward. Neurologists refer to that as "gait ignition failure".

Yes....there are worse things one could have, but we are dealing with OT and it is 'life altering'. Of course, we are thankful it is not fatal; so we all try to find different ways of coping with this unusual and rather unknown condition.

Continue to check this site, you will find a lot of support here because we all understand.

You might wish to go back to your profile and add where you are located. It is helpful to Gloria and it is helpful to others who log on to this site. You might find others near you and you could get together to compare notes. It is very helpful to find someone else you can talk to and relate to regarding what you are experiencing.

Good luck!

Betty
stella R
Posts: 103
Joined: Thu Jan 17, 2008 2:51 am
Location: winnipeg, manitoba, canada
Contact:

Re: OT - Experienced over time

Post by stella R »

Hi
I Have been having a strange feeling in my leggs for some months now.
It is very hard to describe.
It feels like the blood is rushing down in my leggs when i get up from sitting.
It happens more often now.
I cannot walk until it passes.It is a very scary feeling.
My Dr. says it is progression of Ot but i dont know of anyone else who has this.
If anyone else has these feeling i would love to hear from you
Thanks
Stella
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: OT - Experienced over time

Post by gloria »

Dear Stella: Personally I have never felt the sensation of blood rushing down my legs nor have I ever heard of it as a symptom of OT. It sounds like it might be a separate medical problem from your OT, perhaps circulatory and you should have it checked out. I hope all goes well, Gloria
golfnut
Posts: 184
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time

Post by golfnut »

Dear friends - it's time for yet another posting from me in this "open diary" about my life with OT.

Since my last posting Dec 18th I have gradually changed from Clonazepam to Gapabentin. The headaches during the change period was quite unpleasant, but disappeared after a while. But a new problem occurred - I could not sleep! I had great problems falling asleep and the I woke up after just an hour or so - wide awake. Then slept again in the early morning hours 2-3 hrs. Huge problem - sleep is important. Now I take a Clonazepam 0.5mg before going to bed and YES, I sleep much better! I've just started an increase in Gabapentin - taking three 300mg per day. My standing time before the change mid December (taking just one Clonazepam) was 6 sek. Now I'm up to 12 before the tremors are visible - and I can stand up to a minute before it becomes too much when I try at home (I know it's different "in real life" but I have tried to have a setting where I can measure my standing time in a similar situation so that I can compare what happens using this or that medication). So, basically this works quite ok!

It's a bit funny to look back and remember that I initially thought standing less than 45 seconds was a problem... It's amazing how you adjust and learn to cope. I know I am better off when I avoid crowds, standing in lines - but apart from that - I manage fine. Today shopping I chose a cash-line that had a railing to one side. Perfect to lean on and the waiting in the slow line was no problem. Then the tremors get in the way when you put all your shopping items to the cashier and packing them afterwards - but, it's doable!

I am now also stepping head on into a situation I have dreaded - airports! I have decided to fly to Vancouver Canada in May. 5 day's of work/conference and 5 day's golfing. I have ordered wheelchair assistance at the airports (and a golfcart when I play). What I dread is actually the looks and stares from other passengers waiting in security checks aso: "why is she in a wheelchair".... But I plan to bring my folding stick and have that as a signal that "all is not ok". And then I also plan to mentally work through this silly concern about others. I AM in need - I am not asking for a wheelchair for fun! I cannot manage without.. (talking to myself) I'll be ok with the situation when it happens. I will make sure of it - so that I can enjoy and be comfortable and confident!!!
This is a challenge that I indend to overcome so that I can travel again..
If anyone reading this is located in Vancouver or Vancouver Island or nearby - send me a message - perhaps we can meet up? May 21-25th 2012 are the available dates...

I think I have mentioned that I have acquired a rowing machine that I use several times weekly. It is very good for the shoulders and back and also gives me a workout for the legs and arms. Tomorrow I'll start listening to a book while rowing - I think that will help me do a longer distance... :) I feel this is a good way to get some excersise and recommend you try it if you can.

So - all in all quite a good start on 2012.
Take care everyone,
the Golfnut
Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: OT - Experienced over time

Post by Betty »

Hello Anne,

As usual, I enjoyed reading your latest post to your 'open diary'. I hope you are able to tolerate Gapabentin, it seems to be the one most find helps best. Happy to hear the Clonazepam has helped with the sleep problem. Sleep IS most important.

Regarding your trip to Vancover in May, and the use of a wheelchair, I had the same problem, I didn't want to use one because of what others might think. I decided it didn't matter what others thought, what was important was that I felt comfortable getting through the airport.

You will find after using a wheelchair just once, it will give you the confidence you need and the next time you will not think about what others might be thinking. Also, do you have one of the Handicap Cards Jeff put on this site? If not, check it out and print a few for yourself. I have a couple; one on my key chain and use it often.

Because my tremors are so severe when I stand, no one questions WHY I use a wheelchair. Of course, when seated, I have no tremors at all, and I am sure people question why I have one, but I have gotten beyond that ~ you will too.

I have also become more comfortable when trying to shop and stand in a line to check out, even though my tremors are severe, and people behind me become impatient, I turn, look them in the eye and say, "I'm sorry I am a bit slow, but I have a neurological problem, and this is the best I can do". They then tell me not to hurry, it's okay. It took me a while to do this, but it comes very easy at this point.

I do hope someone will respond to you who lives in or near where you will be and you can meet. If you haven't had the experience of meeting someone else with OT; it will be wonderful for you and the other person as well.

I have had the privilege of meeting many and correspond with them. The FIRST person I met was Gloria ~ what a lovely lady and an inspiration to us all.

Keep posting, keep exercising and by all means ~ KEEP PLAYING GOLF!

Good luck.
Betty
golfnut
Posts: 184
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time

Post by golfnut »

Again it's time for an update to my diary..
First of all - thanks to Betty for good advise, courage and support. I warmly appreciate your input!!

Status today is very good as the gabapentin is really helping. Measuring standing time is a bit "silly" as standing well rested, at home, with a chair just nearby - is not at all as standing in a shop trying on trousers... In any case, my standing time, well rested at home - has increased! I have measured it but more importantly I sense this as drying after the shower (where I sit) is easier, dressing is easier and I manage better over all. So I'm very happy!

Sleeping is still a bit off/on - but as I do not have to rush to work I can have lazy mornings and all work out just fine.

"Trying on trousers" was yesterday's adventure. I imagine many of us have a problem with trousers as today most trousers seem to be designed for 18-yearold size 0 girls. I'm not a very "big" person, but a bit "curvy" and finding trousers that fit is a real work-out that needs patience and being in a good mood! Anyway, I know a great boutique that has trousers for real people and there I went. A superb assistant helped me and we really worked our way through many various models and designs. There was a stool in the changing cubicle I could sit on - but you still have to stand there to be looked at in order to find (perhaps) another better size/model. In the end I was quite exhausted - but happy! Good trousers found, and despite shaking a bit here and there I managed!

Now I’ve just downloaded a new book to my Ipod and it’s time for the morning walk. I try to make two 1.5 hr walks in the weekends weather permitting. I have a goal: “Beautiful in British Columbia” (HUGE smile) that helps me in my effort to lose some weight. I do realize that a weight loss, even if small, will help my legs. So long walks in weekends, I row almost every morning on my rowing machine, jump about the best I can (haha!) and do sit-up’s and things.. All with the idea that doing something is better than doing nothing. And as I hope to see some OT friends in Vancouver (see earlier posts) I must be in shape!

Take care everyone -
the Golfnut
Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: OT - Experienced over time

Post by Betty »

Good morning Anne,

I always enjoy reading your updates to your "diary"; I think it helps you and also helps all of us. I/we see a lot of ourselves in what you write.

I was so pleased to read Gabapertin is helping you, to some degree, with your standing time as well as your stability. It does seem to be the ONE medication which helps most. I do hope your sleeping will improve as well. It is important to be well rested to get us through the day.

You made me smile :) when I read your comments; RE: "Trying on Trousers". I think we have all been there, and I try NOT to shop any more than is absolutely necessary.

You seem to be doing ALL the things most helpful to keep you in the best physical condition possible. I know walking is one of the best things we can do to help keep us as mobile as possible and keep our muscles strong. You are going "the extra mile" with your rowing machine, sit-ups and "jumping"! That I can not do; (another smile :) ) so good for you.

I do hope you are able to meet at least one person while you are in Vancouver; have you heard from anyone in that area?

Enjoy your trip and ENJOY your golf. I do miss playing; so hit at least one for me.

Take care and keep us posted.
Betty
golfnut
Posts: 184
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time

Post by golfnut »

Hello all,
sometimes you get lovely ideas - sometime crazy ones... My latest idea, a bit crazy I admit, is to book a one-week trekking trip to the Alps in Austria! My walking is good and I have always wanted to do a bit of trekking/alp walking so in August that is what I'll do. It's all pre-arranged with guides and you make one-day walks and return to your hotel. So there is no heavy backpacks to carry (which I feel is not possible) just a change of socks, water and so on. I so look forward to this! And I also realise that if my OT get's worse, I would loathe not to have taken the opportunity to try this now. I do walk a lot but if I cannot manage when there - I'm sure the visit to the Alps will be great just the same.
And - yes, this means another "airport management situation". I feel very brave! :)

Still on 3 pills of Gabapentin per day and coping quote ok. Finally sleeping seems to have improved as the "waking up three or four time every night" seems to have stopped. Now I wake up once or twice. I suppose my head/body have now gotten used to the medication. The weight struggle is giving some result and I am happy for every tiny bit of loss that shows on the scale. One of the goals for weightloss was that my summer rainjacket should fit better - now it does!

So is all bright and sunny and very positive in my life?? No - of course not! But I have decided not to dwelve on the grey areas and look instead on the things that are good!
And what is good is the up-coming Easter which means time off and this year's first golfing. It'll be interesting to see how that works this year... Fingers crossed!!

Take care everyone!
the Golfnut
Last edited by golfnut on Mon Mar 12, 2012 1:54 pm, edited 1 time in total.
Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: OT - Experienced over time

Post by Betty »

Hello Anne,

So good to read your latest entry to your "diary"; it is so positive and enjoyable.

Regarding your idea to book a one week trekking to the Alps sounds great, and I feel you will probably do just fine. But...as you said, the backpacks might be a bit of a problem, but you can at least try. You may surprise yourself.

Just the trip alone would be a wonderful get-away.

Happy to hear the Gabapentin is working for you and you sleeping seem to have improved. Weight is something ~ I think ~ we all try to manage. Just a few pounds can make a big difference.

Good luck on your golf outing; I know you will enjoy that. Keep us informed.

Betty
golfnut
Posts: 184
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time

Post by golfnut »

Oooops ! My text above is now edited as I had forgotten a very important "no". The Alptrip: as we return to the hotel every day, I only need to carry small items... nothing heavy at all.
Sorry about this error, Betty and others. Carrying is a no no!

:)
Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: OT - Experienced over time

Post by Betty »

Anne, with the correction....you should have NO problems at all.

Have fun and enjoy!

Betty
golfnut
Posts: 184
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time

Post by golfnut »

Hello all,
some mornings you feel great, others are harder. But I also think that I am sometimes too careful, in a way deciding beforehand that "no I cannot do this, I cannot do that" without even trying.. It's a personality thing and I am the kind who like to have control, feel sure and safe.. a bit too much I think. It is a good thing to try your wings from time to time and the result is often very positive.

So on this note I have now started my trekking adventure by walking on a path in the woods by a lake. It was really wonderful, nice views and sunny. I had my brand new trekking boots on, "Nordic poles" (I think you call them, you know for "powerwalking?) for balance support and a small backpack with water and an apple, bandaids aso.. :D Looked very professional I'm sure!
And you know what - it went perfectly well. After 1.5 hrs I was tired yes, and the day after I felt the muscles in my legs had gotten a good work-out, but I managed!
I think I sometimes stop from excersise thinking "it will be too much for the poor legs" - but they are stronger than I think! And honestly - what can happen? A bit of muscleache is not deadly so to speak...
I must try and do as much as I possibly can now while my OT is manageable.
Be a brave golfnut quite simply!

Take care everyone and make a try - you might be surprised! :D
Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: OT - Experienced over time

Post by Betty »

Hello Anne,

You always have a wonderful way of writing such positive things; it makes me ~ and I feel all ~ have more hope and try to challenge ourselves more.

Your "trekking adventure" by the lake sounds like a great place to get yourself in shape. Keep up the good work. What better place to walk than in the woods by the lake.

Looking forward to your next update.

Betty
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