The Orthostatic Tremor Forum (archive)

Any suggestions, tips, gadgets etc?

The following are a couple suggestions compiled from earlier entries/messages at the OT Resource (thanks for all of the great ideas!)-

"I catalog order for shopping -- cannot stand long enough to do any shopping. My groceries are purchased a few items at a time, preventing me from having to stand in line at the checkout -- also I choose a grocery store that puts the items on the belt for me" B.

"I have found a useful way to help the other person you are conversing with (as you pace back and forth like a tiger in a cage) to understand quickly using the following method. I simply say to them, do you remember what it was like to learn how to ride a bike? (They always say yes.) And do you remember when you found out that the only way to remain upright and to maintain your balance was to keep moving forward? Well, that is what having orthostatic tremors is like. And they seem to understand immediately." R.

"One other 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! R.

"In recent years I have been using a stool in the kitchen when I cook and I have a bench and a bar in my shower." E.

"My husband is especially supportive (literally), and helps by taking my place in line whenever possible or watching for when I need to be rescued." N.

"I switched my music activities from singing and directing music to playing the piano. I guess this is one emphasis I would make--to know what you can't handle, and either find an alternate way to do it or abandon that project for another." M

"My primary reason for writing this is to tell others about a piece of equipment that has helped me greatly. It is a stroller/walker with four 8 inch wheels, adjustable handbars with brakes, removable basket, and, best of all, with a stool-height ledge seat that you can turn around and perch on to shop, or stop to converse with a friend. It is light weight, collapsible, and easily transportable in the trunk or back-seat of a car. It's readily available now in most retail medical supply stores, or (cheaper) through health-oriented mail order catalogs. I bought my walker from a mail order house which now has a great catalog website: http://www.drleonards.com using "deluxe mobilator" as a search word. With this unit I have been able to maintain a reasonably active and productive lifestyle." M

"I have found one little thing very helpful- I have a " Sport Seat" . It folds up like a cane but has three legs and a very small seat. So, if I know I am going to stand in a line, like at the airport, I merely unfold it & sit down. Being 74 years old also helps because nobody even looks at me twice except in envy. One guy at the airport last year said, "It's too bad you don't have about twenty more of those, you could sell them for a profit". P.

"I have the following useful items which make my life easier. In my kitchen I have an adjustable swivel office-type chair which I find extremely handy for cooking and moving around the kitchen. I have acquired a portable collapsable stick chair which unfolds into a regular chair. It is slightly cumbersome to carry around but when I go out with it, I feel much more secure and confident knowing that I can sit down immediately no matter where I am. I even use it if I have to queue. ( An alternaive would be to use a light stool/seat which you can sling over your shoulder.) " V.

"I can still play golf(poorly). It is important, however, that I use a golf cart where I can sit while others hit. I also do not stand long to address the ball or to putt." D

We went shopping last night and I had my husband use one of those electric wheelchairs and he said it was the best shopping trip he had been on. " B

"My life with OT is one of management, sharpening my coping skills and knowing my limits." G.

I would just like to say that the analogy comparing OT to riding a bike, is one of the best ways I've found of explaining the condition to friends. I've used it on numerous occasions and it really does seem to help others understand a little of what we are going through!
Lynda

This website has a variety of chairs for showers.

http://www.spinlife.com/critpath/match. ... &pagenum=1

Hi Ladies.

I have been doing something with zip up robe I thought I should share. Very simple I leave Last inch zipped and step in and out of it instead of trying to stand still to hook bottem together

Keep on Keeping on: Virgina

I have never enjoyed doing the ironing - but since having OT it has been made even worse! I have tried sitting down to iron, without too much success, and up til now I have got by by leaning on the wall and doing it a little at a time. However, I have recently invested in a domestic electronic laundry press which is designed to be used sitting at a table. It takes a bit of getting used to, but with practice I'm finding it a great boon. The ironing can be done twice as fast (apparently!) AND I can sit for as long as I want to doing it! It wasn't particularly cheap but I feel that it has been a really worthwhile investment for someone with OT. I thought others might like to know!
Best wishes to you all,
Lynda

Coping Techniques

Here's another one. I have found over the years that if I turn suddenly and start walking, that I have some balance issues. That is, I don't always seem to navigate in a perfectly straight line. This is less of an issue outside on the street where a little speed ensures a straighter line.

But inside a building (example - my home, or at church) where one must walk a lot slower, I feel less certain in the steadiness of my direction.

I have found that if I have a "touch reference" that it can really help. To do this I just reach out with whichever hand is closest to the wall and let one of my fingertips lightly trail along the wall. I don't really reach out so much as walk closer to the wall and angle the closest hand out so that the index finger contacts the wall. It really doesn't take more than a finger tip (or a fingernail) to give my brain (or my internal gyroscope that is malfunctioning) the reference it needs to orient me to the world and the space around me and provide me with a sense in space of where I am as I move forward. I've gotten so good at this that most people around me have no idea that I have a problem.

I don't know if that was explained very well, but you might try it and if it is effectual for you, you will 'get it' immediately.

Keep on moving and shaking!

Rich

HI
i do exactly the same thing.
I WAS SO GLAD TO READ YOUR NOTE.
THAT IS HOW I GET AROUND.
I DONT KNOW WHY BUT IT WORKS.
GOOD TO HEAR

13 things... coping skills can be adapted to all needs, problems and concerns -

1. Turn to someone you trust. It can be a relief to share your thoughts with someone else, and it can be good to work through problems with the help of another person.

2. Write it all down. Keeping a notebook handy for you to scribble your thoughts in whenever you feel like it can be a great way of expressing yourself. You may find it helpful to write about what is worrying you, or express yourself in a more creative way.

3. Set aside regular time for yourself. Even if it’s just ten minutes of ‘you’ time, taking some space for yourself where you turn off your phone, spend time alone, exercise, meditate, or listen to music can really prepare you for tackling stress or challenges.

4. Walk away. Work out which situations you are likely to get most stressed out by. If you feel like you’re getting too angry, end the conversation, take some space, and don’t resume talking until you are calm and ready.

5. Overcome negative patterns of thinking through self-talk. Self-talk can help you see things from a more positive perspective and give a huge boost to your confidence.

6. Reduce your load. Sometimes you just have to accept that you can’t do everything. Keep track of your schedule and how you feel each day, and working out your optimal level of activity. You should be busy, entertained, and challenged, without feeling overwhelmed.

7. Consider the big picture. When you’re going through a stressful situation, ask yourself these two questions. ‘How important is this?’ and ‘will it matter in the long run?’ If you realise it doesn’t, it’s probably not worth getting too stressed out by.

8. Learn to forgive. Move on from hurt, regret and anger. Whether you are angry at yourself or someone else, it doesn’t help you to hold on to negative feelings like resentment.

9. Hone your communication skills. If you know how to communicate a problem well, it will help prevent conflict from escalating, and could help solve the cause of the stress in the first place.

10. Build your optimism. Optimism involves learning to think positively about the future - even when things go wrong. That’s not to say you pretend that everything is fine when it isn’t. Instead, it’s about looking objectively at a situation, making a conscious decision to focus on the good. It can be hard to do, but if you practice, you’re likely to get better.

11. Learn how to set (realistic) goals.

12. “Relax, man” Relaxation is a great way to refocus your thoughts, particularly when things are becoming a bit overwhelming.

13. Build your gratitude. Take some of your focus away from the negative things, and take 5 minutes each day to identify 3 things which you are thankful about.

a wonderful list from http://au.reachout.com/Building-better-coping-skills