The Orthostatic Tremor Forum (archive)

Hi folks

My mother has just been diagnosed as having OT (to give a quick description of her symptoms, which she has had for around 2 years, whenever she stops in a standing position her legs are shaking constantly, also if she is holding a phone her hand shakes).

Just a few short years ago she was diagnosed with another very rare condition called 'Heamachromatosis', an iron disorder, which her doctors treated by taking a pint of blood every week for months. Now she returns only once every few months to give a pint of blood, this will continue for the remainder of her life. I doubt there is a connection between these two rare conditions, but thought i'd mention the Heamachromatosis anyway.

I am not sure exactly what i want to ask you folks on here, OT is something very new in our lifes, i'm really just after any useful information that may help ease my Mum's condition. The drugs, i think (hope), we can leave to the doctors, but what about alternative therapies, has anyone had any success in this respect?

Also, what day to day advice can you give that will help my Mum to cope with this condition.

PS. is OT curable, or is it for life? and does it have any impact on life expectancy?

Regards
Ali

Ali,

A thorough reading of this site and its various posts will go a long ways to answering most of your questions.

On the subject of alternate therapies, I know of no success stories. Again, reading of this forum will take you past all of the things that have been tried.

In the aggregate, most of what you will find here are descriptions of ways that we have learned, or are learning to cope.

Is OT curable? Not from anything that the good folks on this site have been able to determine. Nothing is impossible, as they say, but if it is curable such information has not been conveyed to anybody here.

In fact, it is becoming clear for many of us that it is a progressive disorder, albeit a very slow progress for most of us. In my case, I first noticed my symptoms in about 1991 when I was in my 51st year, but it was 2002 before I was bad enough to try and research what was wrong with me. Research now seems to indicate that the average is about six years before one is diagnosed.

As I write this in mid-2009, I can still function without a wheel chair but standing in any situation for more than one minute is difficult and more than 5-7 minutes is impossible. Increasingly I am using a cane chair which can be employed if I get in a situation where I must stay in place (i.e., a book store perusing the bookshelves). If I am in a situation where I must 'perform', i.e., public speaking, then I vibrate like a tuning fork. I came to the conclusion that I must do all that I can to avoid stress and adrenalin flow. If I do that and allow myself to sit when everyone else is standing, then I usually do so well at coping with this that people will disbelieve that there is anything wrong with me. That disbelief from others can have both positive and negative aspects to it.

I have never been willing to try any of the various medications you will find written about here, mainly because I have read about so many deletorious side effect issues. Plus I have yet to read of any compelling stories of real help gained by taking any of them. But then, the progress of my particular form of OT has progressed in a way that I can keep accomodating myself to the changes as they come at me. I seriously doubt that the presently available medicines would have been any help to me - but that's just me.

As to life expectancy, I have never heard anyone claim that there was any life threatening aspect to the Orthostatic Tremor disorder. Probably one of the reasons that research on the causes and treatments of OT has been so lacking.

If your Mum doesn't use the internet on her own, may I suggest that you get her next to a computer and visit this site. Then, just start reading from the various threads to her. She will undoubtedly find the content of great comfort and may even ask you to post her story for us all to read. The consequent sharing of a common experience with others having the same condition will be good for her.

Rich

Thanks for taking the time to reply Rich, it was good to read of your expierences and your advice is appreciated.

I know my Mum gets tired with the constant shaking when standing, but fortunately she is still able to go for long walks, i think its the stopping and standing still part that wears her out more. OT, as you have pointed out, is a progressive illness, so obviously i am worried that, if or when it gets worse, she will struggle with walking for more than several minutes without needing to sit down. You mention you use a cane chair, can you tell me more about this? I'll need to do some research into lightweight, foldaway stools/chairs, if i can find something light enough and small enough so that my Mum can carry it easily as to not get in her way, then she might just be convinced to use it in the future (i dont think she's quite ready for it yet!). Do people with very bad OT all carry foldaway stools of some sort? It seems to me that it would be the obvious thing to do.

Question.... is there any evidence that OT is hereditary?

PS. my Mum is on the interent so i will try to get her on here, i know talking to other sufferers would be good for her, but like a lot of people in her age group, she's not very clued up on using chat forums etc...... we'll see!

Take care Rich

Regards
Ali

Sure Ali,

Glad to be of some help. Helps to justify my existence

For more personal stories - quite a few, actually ...

http://www.orthostatictremor.org/visitor.html

At that location you can read my first posting before there was a forum. It talks about the cane chair there but I will repeat it here because I have been thinking that with this forum people may not know about that other earlier information. So here it is:

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One thing that I have found helpful is a product called a Sport Seat. It is light and very portable and looks like a cane when closed. In fact you can carry it in one hand and use it like a cane. But it quickly opens to a little three legged stool that gives you that needed stability when you are in a setting that requires you to stand in one place. You can find one and order it from Sport Seats International Ltd. in Garland Texas (800) 567-1898 and for those of you outside the USA TEL:(972) 485-8300 or on the internet at http://www.handyseat.com/ or by email through <info@sportseat.com>. It is a quality product, doesn't cost much and works exactly as advertised. The other day, I used mine for the first time in a library while perusing bookshelves - what a lifesaver!
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I have found that a regular cane is pretty useless for us POTers. However, this gadget is an absolute lifesaver for OT champs. When you use it in a public setting, it is an amazing conversation starter. I'll whip it open and the conversations start. Example, the other day I was in a hospital hallway (no seats at all) waiting for a specialist to open his office door (lunchtime) and so I flipped it open, put it in front of me, straddled it and sat down. Other people in the same hallway who were also standing and waiting were suddenly energized. Calling out to me with such things as, "Where do I get one of those?" and, "Will you sell that to me?"

I swear, when I go out with my cane chair, I could easily sell 5 or 6 each time I use it in public. It's light, portable, folds flat to fit right alongside me when I'm driving. And the relief when it is in place and I settle down onto it is instant. I think they should rename them POT seats

It occurs to me that a lady wanting to carry one of these will need to be willing to wear a pant suit or trousers, because the safest way to sit on it is by straddling it with the cane handle protruding forwards (might be a little difficult with anything other than the fullest of skirts - but then, what do I know?). I realize that may sound awkward but it actually provides another benefit than safety - it gives you a place to rest your crossed arms in front of you. Additionally, for the lady it would give her a place to hang her handbag/purse.

Here it is again:

http://www.handyseat.com