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 MikeS
I noticed that most posts get a lot of views and very few comments.I was lucky enought to attend the OT meeting and talk face to face with fellow suffers.
This condition we suffer from is very complicated and is hard to explain to people.I would love to see more posts and replies on here .People just telling each other how we are ,how we are coping just stuff that happens everday.I for one that has not long been diagnosed am finding new problems daily.I log on here everyday to see whats happening and it appears very little.Is it that everyone is just getting on with it? and has nothing they think worth sharing?I have now got my wheelchair,I am not taking any medication,Im considering having a badge made saying 'Unless you have 20 min to spare and really care please dont ask how I am'Do others get told by lots of people that the should try acupunture,massage,herbal cures,chanting,running ,swiming,chriopractionists,and if so have you tried it ?and does it work?Do you get fed up explaining to people that evertime you get up in the morning the whole thing starts again.Explaining how many times a day you have to stop moving...from getting dressed in the morning ,stoping to choose a shirt a pair of pants,shoes,puting kettle on opening fridge etc etc...
I am doing fine in general like all of you I have good days and bad days I try and keep my sense of humor and just get on with it But I also have the days like last week when I had to tell my 20 yr old daughter that her hero ,her big strong dad that used to be invincible in her eyes cant stand still long enough to change a lightbulb and by the way I have to use a wheelchair at all social occasions and shopping.Sorry this has turned into a rant but if I cant tell you guys how I feel who can I tell ?Only you, the people that suffer from OT really understand.
Thanks for listening
Mike :D
By patty
Hi Mike, I suppose you are right we do just get on with it, maybe we have become complacent knowing there's not a lot of help in the medical world at the moment for us. It never ceases to amaze me how very thoughtful & caring the members of this site are & at times very amusing (like yourself). We have to keep a positive attitude or else we would quickly get very depressed.

I, like yourself have good & bad days, but am not yet wheelchair bound, but I do know what is coming as my mother had the very same complaint. I have recently been in touch with a couple of people who live not too far from me with OT & now go to see Vivien on a monthly basis & am hoping to meet up with a chap, Ron, who also has OT, they are really lovely people & just to at last be able to meet someone else with this frustrating disability is wonderful because they are the only people who truly understand what we are going through.

I have, in the past Mike tried many types of therapy (before I was diagnosed by Peter Bain) ie; relaxation, massage etc. I did find the relaxation very helpful,(I think a little hypnotherapy was used) but was quite expensive & it did'nt last that long.

I take half a clonazepam tablet when I know I probably will be standing, like shopping etc, but I feel the more I take them the more I lose my confidence when going out because I think I wont be able to manage without them, but on many occasions I can, and feel extremely pleased with myself when I have managed 'cold turkey'.

I know, as does everyone on this site what a pain this is, but remember Mike you have other attributes that a fit and healthy person may not have so my message is keep your sense of humour its worth a fortune!!

My very best wishes, Patty
By gloria
Dear Mike: Thanks for reminding everyone that we need more posts and replies. Participation and communication is the most important part of the site. It is the presentation of what life with OT is all about. Mike, you will always be your daughter's HERO, your OT challenges will never change that. Please help her understand in detail what life is like with OT and I do suggest, if you have not already,let her read the Home Page of the web site as well as the input areas. Remember, Dorothy at the meeting and how supportive and informed her daughters' were? You also met Beth and Jeff so you know how blessed I am. Gloria
By Joan
Hi Mike
I'm so glad you posted this. I also check here each day, it really helps me to know there are other people out there that really understand what I go through on a day to day basis.It keeps me from whining to my family ( I really don't do that ). I enjoy hearing about someone's trip to the store or coping with flying or even getting around the kitchen. How do you do that anyway without falling over all the time? I wedge myself into a corner but then no one else can get into the cutlery drawer. Or take yesterday shopping at Costco. I went into their big fridge, leaned on the door and tried to pick up a pack of eggs. Well, I started to shake and stuck my finger into one of the eggs, messy, I looked around and put it back. Then I had to take a deep breath and start again. Now I've turned into a criminal!!
I don't explain anymore to people what I have, I just say I have a balance problem and that seems to do it. If they really care I'll explain, mostly they just want to buy my stool for their Mother or Father who has arthritis.
My children sort of get it but I think they forget a lot as they are used to me doing everything. My grandkids really got an eyeopener when we went camping, they were awesome and would do almost all my chores for me so that I would swim with them. I can still swim!!
Mike, keep posting, I will if you will
By Chris
Hello everyone!
I too check the site quite often to see how people are coping and it is nice to hear from you. I have my good days and bad days like the rest of you and sometimes I get tired of always having to worry about my shaky legs and how long I can actually do something which requires standing. I am really enjoying my gardens this year as my husband has made them very accessible for my garden cart. They are actually looking good for once as I am able to reach most of the plants, and weeds of course. I spend a lot of time with my flowers which really makes me feel great. I also was able to help with a construction project last week which entailed building a wooden walkway in part of our yard. I was able to sit and stain all the wood which was a really great help for my husband.....after that I got carried away and stained some benches, chairs, etc...... It was great fun and it didn't really matter that I couldn't stand.
My family is pretty good about my need to sit down but sometimes almost go overboard and think I have trouble walking as well. I have to repeatedly say that I am able to walk and do things just not stand for more than a few minutes. I am lucky I have a very understanding husband who encourages me to do things when I don't really want to and helps me find a way to make the best of the situation. Good thing because I probably would become a hermit without him. :lol:
Enjoy the summer and keep posting....I know I will too if you do.
By Harriet
Hi all,

I too like the idea of sharing our daily trials and tribulations. I loved your story about the eggs, Joan. I laugh when I think about it. I am at present about to go to a local 99 cent store. I went there a couple of days ago, saw that there were only one or two people in line at the cash register, filled a shopping cart with marvelous buys--and saw that there was now a line of 8 or 9 people. No way could I stand in it. So I plunked myself on top of a stack of garden chairs and waited. Back to the line. Now 10 or 11 people. I sat and looked and sat and looked as the line got longer and longer. No way could I manage. So I returned all the items to the shelves and left, now shaking profusely as just the thought of standing in line was making me exceedingly anxious.

I'm off to try again. Wish me luck!

By Harriet
Hi again,

This is to report my success at the 99 cent store! This time there were only 4 or 5 people in line and I was able to get to the check out counter before panic set in. I felt that the sense of support from so many people experiencing just what I do helped me to go back and get through. (However if there had been more people on line I would probably still be sitting on top of the stack of garden chairs!)

How is everyone? is a great topic!

By Chris
Hi Harriet
Good for sound exactly like me in stores. I was in London Drugs the other day and the same thing happened....I had things to check out but the lines were too long so I found a comfy chair in the lawn chairs and waited. Eventually there was only 1 person in line so I hightailed it there as fast as I could....just as my husband walked into the store looking for me. He usually stands in line for me. Oh well....I tried. I enjoy using the power cart in our local Walmart and I have only mowed down a few little old ladies and had a few near misses with huge displays. My grandchildren usually run interference for me most of the time so I actually enjoy shopping there. Life can be interesting and I guess we have to look at the humour of it all sometimes and enjoy our little successes.
Hang in there
By MikeS
Hi Everyone
I must say that even reading these few posts has made me feel so much better ,just sharing this stuff is a therapy on its own.
Harriet,print off the cards that are available here and when you go to a store just show them to a clerk and they wlll let you go to the front of the line.
Gloria once again thank you for your words of wisdom.Dave I notice you live in the UK and if you are registered disabled you shoud be able to get a grant to convert your shower into a bigger one that you can put a stool in.
Thanks again everyone
Mike :D
By sue134
(((WOW))) What a breath of fresh air in reading these postings

As a carer to my son I can get very low in myself and just reading these messages have brought a smile to my face.
To be quiet truthful I found this site very formal in just having questions and answers, because of this I was under the opinion that most of you had busy lives and were only coming on here occasionally
Now everyone seems so friendly :) :) :)
By jolarson
My first post but a long time reader and follower of all the posts. It is encouraging to know that somewhere someone completely understands and is experiencing the same problems that I do. Thank you all for being there. I have experienced the systoms for about 15 years. I was actually diagnosed 1 year ago at UCLA neurological center. I had been to 8 neurologists and most misdiagnosed or simply said they didn't have an answer. Some did all the tests for Parkinsons, MS, essential tremors etc. but I finally decided I would go to UCLA and bingo! within an hour I had a name for this disease. I am the only patient ever with it at UCLA, so I am like a case study. I've been on Clonazepam 0.5mg at night and when I am active during the day. They also since gave me Gabapentin and I had terrible side effects from it and was taken off the medication. I will say that nothing really helps. I get much support from reading all of you. I am a widow and live alone so cooking is mostly leftovers, frozen dinners etc. because I cannot stand for more than 20 seconds and have to sit to cook. I have stools or chairs in every room for the quick sit down. The shower I use has a built in seat with a European faucet so I can take my shower sitting down. This is the room I am most grateful for in the house because it makes bathing so much easier. Tubs are no longer a part of my life, especially living alone. As someone said shopping is also an anxiety time. I only go to stores that have carts that I can lean on and then it is trouble finding something towards the bottom shelves, so I just don't go there, too difficult to lean over, balance while hanging on to the cart etc. It must be obvious because occasionally someone will ask to help me. I am not able to vacumn etc because my balance will be too much of a problem. I do sit down to do everything possible. I have a seat cane (not the tripod, golf type) that is very sturdy and I have given a few away to people who have other neurological problems and have extras around the house for doing laundry etc. A sense of humor and a positive attiude is a must. I make myself be social and try not to miss much except when there is a basketball, football, baseball stadium with no handrails, then I have to rely on someone to help me and hold nto me. I so far can walk ok expecially when it is a direct and swifter pace. But when I walk to close quarters and have to make moves to turn around the shakiness takes over and I quickly have to hold on to something or sit. All of us know what the others are experiencing and my heart goes out to you all but try to smile and laugh everyday and stay positive.
By MikeS
Hi Jolarson
Thank you so much for posting ..I notice you dont say where you are from If its something you wish to keep personal thats fine but you never know there might be another OTer near by that you can keep in touch with and it also helps so much if we know where everyone is from .I promise I wont stalk you ! :D
We all suffer the same problems on a daily basis and at the moment I am trying to get some publicty for us and in turn hope that will help raise some funds for research.This condition is so rare that Ive worked out that the odds of getting it are about the same a winning the lottery...hows your luck ? $20million or Teddy Bear legs ..and we get the bloody Teddy Bear legs ....oh well cant win them all.
Please keep posting everyone we are all friends here and it so imformitive to know whats happening and how each person deals with it.
By sue134
This direct talking on OT is helping me to understand and to be aware of what might be ahead of my son.

4 days out of 7 he is unable to walk unaided as he also suffers with ME/CFS
This means on the bad days he is unable to build up enough speed to try and combat the leg tremor which in-turn means there is a greater chance of him falling down.
The few good days he has can be spent by drive his car, try to do a little walking or visit friend's - on these days nobody would know he was ill :)

Its hard at 36 years not being able to plan ahead as you never know until you get up in the morning what lays ahead of you
His neurologist said that the Clonazepam and Pregabalin (Lyrica) will help, but avoided telling us what the prognosis might be for the future.
I realize he would have to have a magic ball to foresee this - that's why I am glad of this forum where we are able to talk on how we are dealing with OT.

Because these tablets are making my son feel like a zombie and the shaking hasn't altered much he is now thinking that he might as well stop them and have a clear head.
Of cause we realize he will have to come off them very slowly so he doesn't have any side effects, so he will be going back to his own Dr to get support in this.

I suppose what suits one doesn't suit another and we all have to work out what is best for ourselves

Look after yourselves :)
By sue134
Hi everyone
I've got some great news to tell all of you and that is my son (Garry) has been granted DLA - HRM and HRC
AS you can imagine this is a huge weight of my shoulders and this will now give my son a better quality of life
By MikeS
Hi Sue
That is good news.You may want to explain to everyone who does not live in England what those benefits are and if you do live in England how you qualify for them.
Mike :D
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