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 Marianne
Dear Jolarson:
For me, since I stopped working in January, my energy level is definitely down. When I worked the tendency was to move around quite often because there were things that had to be done. I got my "exercise" in that way. Now that I am at home, the only exercise I get is just walking around the house. Chores are done while sitting with my husband's assistance. Also the medication (I am on Clonazepam - 4 mgs daily) slows me down. When I worked I took double that amount and had more energy than I do now. Because of all of the above combined, I have gained weight. Also, the energy factor leads to depression which leaves one with a feeling of not wanting to leave the house. I try to get out at least twice a day, mornings and afternoons/evenings. On some days I don't get out and feel like a recluse. I feel I've become a "couch potatoe". I don't know about anyone else, but if I'm sitting for a while, my muscles become almost atrophied and it becomes very hard for me to get into a standing position. I try not to sit long periods of time since it has become harder and harder to stand. I will be seeing my neurologist in September for my periodic visit and will speak to him about what he suggests as far as exercise. Unfortunately, I cannot give up the medication; it does not stop the tremors but just takes the edge off, but during certain times of the day when the meds kick in I tend to fall asleep. I am going to ask about taking Provigil in an attempt to not fall asleep.

I hope that you will not need to go my route and get a scooter but if you feel you need one, I hope that my last posting will help.


By stella R
Hi all
well i have a scooter but i don't seem to use it very much.
I am always amazed at how we all are so much alike.
when i just read our post it could have been written by myself.
IT takes me so long even to make a bed.
I guess we just have to live with it.
I tread the thought of shopping now.
Sorry to sound so blaw, but i just wish i was living closer to people like myself.
take care all
By Lynda
Hi Patty

Regarding your experience at the cinema, I have always noticed that when it is dark, my problems with walking, balancing and standing are exacerbated. I've no idea why this should be, but I believe that others experience this as well (I seem to remember from postings a little while ago.)

I always make sure that if I have to get out to the bathroom in the night that I put the light on, because otherwise I find I stumble about and could cause a nasty accident!

Anyway, I hope you managed to enjoy Mama Mia. I haven't seen it yet but I know the soundtrack inside out, as my daughter saw the film and is now a big fan of Abba songs!

By Betty
Hi Patty,

I wanted to comment about your balance problems when in darkness; that seems to be one of the things I think most of us experience ~ it is very difficult for me as well. It is hard enough to get around when in daylight or a lighted place, but in darkness; it is next to impossible for me.

My husband a I also saw Mama Mia and thoroughly enjoyed it; however, we ALWAYS get to the theater at least 15 rto 20 minutes before the movie starts. The lights are still on and I can get to a seat with better control. It's still not an an easy task, but I manage. I would never be able to get to a seat in the dark.

We also wait until the theater is almost empty before we leave. It is just too difficult to try to get through the crowds and make sure I don't fall.

To mentioned problems getting up at night with no light; have you though of using a night light? We have one in our bathroom and it is just enough light so we can see and no fear of falling or bumping into something. It certainly makes life a lot easier. You might give it a try.

It's good to see so many people now giving information and asking questions. Most of us have experienced the things being questioned and have just learned to cope with them. It brings back to mind some of the things we have forgotten, because we have dealt with them so long; and allows us to share our experiences with others.

Have a good day!
Betty 8)
By jolarson
Hi all - We all sound alike in everything that we try to cope with. It is so comforting to know you all are there understanding our travails. Kaylie, your idea of trying to make yourself get out of the house at least once a day is such a good advice. It forces us to not become reclusive which I sure try to hide from my family and friends. As I have posted before, lack of energy is a problem and I sometimes think that depression sets in. I am a widow so being alone is condusive to allowing oneself to sit and sleep more. Fortunately I have family and many friends close by and I try to keep smiling and not complain or whine which would be such a downer to everyone. We go to the movies and always get there when the lights are still on and watch all the credits after while everyone gets up to leave. Also I want to add that I always leave the bathroom light on at night because I have to go down two steps to the bathroom. It helps to keep away the fear of falling which is always there. And yes, even making the bed takes some tricks such as leaning on the nightstand, the bed and swearing to oneself a lot!! I am going to a convention later this month and dread the thought of airlines, changing planes, where will I find a seat or something to lean on at the convention, etc. I will definitely go the wheelchair route on the planes because the lines are so long, no way could I stand in them. We are also looking into wheelchairs at the convention site because I don't think the cane seat that is such a treasure to me will be enough. But I am going to tough it out with the best attitude I can muster, see old friends, lean on my daughter and enjoy the adventure. Again, so grateful you all are out there and we now know we are not alone with this darn stuff!
By Marianne
Hello Jolarson:
Yes, it is amazing how similar our experiences are. It makes me wonder sometime just how many of us there are out there? Before I found this forum, I believed that I was one of the few who came down with this condition. As I mentioned many times before, my diagnosis (in 1996) only took two years. It took me a few doctors before I finally hit on a neurologist who just happened to be finishing reading a paper on OT in a medical journal. Otherwise, he probably would have look at me like I had four heads as well. I am blessed to have my current neurologist now. He's a specialist in movement disorders (especially PD) and has a few patients with OT. Tried every medication under the sun; nothing helps. My one constant is Clonazepam; doesn't stop the tremors but takes the edge off. Let's put it this way: if by any chance I did not take my meds in the morning, I would know it.

We cannot let this disability get the best of us. We need to control it; we cannot let it control us (even though at times we know it does). If we give up, we are only hurting ourselves. We do what we have to in order to maintain as normal a life as possible. And that means, rising each morning, take care of our ADL's, doing whatever we can to take care of our home or apartment and most importantly, getting out of the house, even if it means "window shopping in one of the local malls". I'm grateful for this forum; it really helps when you know that you can "speak" to another person who can relate to all of this craziness, give encouragement and pass along tidbits about how something or another has helped them in their daily lives.

Have a great convention; please be sure to use wheelchairs whenever you need to. Those security lines can be harrowing.

By Lorie M
Hello everyone,
I do reply at times but it must go to the secret place in the sky as I must not do it correctly. Computers are not my best form of communuication. I can read the postings and thus become a reader and not a poster!

This is a test to see if it actually shows up somewhere.
Lorie M
By admin
Hi Lori,

I'm not sure where the post went, one thing to check is when writing a new post to click on "Submit", unfortunately, the forum software also has a misleading "save" button at the bottom of the post. Clicking on "Save" will only keep the post as a draft.

If by chance a post has been saved as a draft:

1. login in
2. click on "User Control Panel" which is located in the upper left of the screen just under "Board index"
3. then click on manage drafts.
4. click on "'load draft" next to the message (if it's here) then you can edit and submit to post it.

If it's not there....... well.... stuff happens : ) but don't let it stop you from posting.

Jolarson - good luck with your travels, you might want to try printing out some of the travel cards for your trip, some folks have found them to be helpful with the airlines, here's a link: travel card if you don't have a printer you might be able to give the following website page to an office supply company such as Staples and they may be able to print them:

Mike- thanks for starting a great conversation!

best regards everyone,

By jolarson
Jeff - I did print out the travel tag that you recommended. Fantastic!!! I will definitely take it to have tags made at Kinko's. There probably will be times when I'll want to wear it around my neck like a necklace!!!! Even at home when I'm not traveling.....................Everyone should look at this site, print it out and keep it on hand always. Thanks to all of you for being just being there................
By Marianne
Hi Lori,

Don't get discouraged. Post us again, we are all here to support one another in many ways, shapes and forms. If you browse through the topics in the forum, you will see the many things we "talk" about.

Hope we hear from you soon

By MikeS
Hi All
It is incredible that we all seem to suffer the same problems,I to am stumbling a lot more when I walk ,my balance in the dark is terrible I tend to launch my self and hope for the best.Most of the time when going out I tend to go to 'safe' places where Im known or I know there is seating or walls to lean on.I work at night I play poker for a living as some of you know...well you all know Im lucky that its a job that means my brains active but I am sitting all the time.
As we have said doing the things that most do ,simple things like making a bed or dressing is exausting.
I am pleased that this has become a popular post ..Lorrie I think i got your message that disapeared into cyber space .
Another question Do any of you have regular visits to your neuroligist I must admit I havent been for a few months.
I should go because my legs actually ache and I can 'feel' them What I mean is I am concious of them.Is this something others suffer from as well?
I still refuse to take any medication because of the side effects .
Keep smiling
By patty
I'd like to ask you all a question again (sorry) when I stand & close my eyes I feel as though I am falling forward, does anyone else have this weird sensation, I don't know if I look as though I am falling forward, I will have to ask my husband when I next try it. Also why should our OT be worse in the dark? is it some kind of eye/brain co-ordination? I do wish some genious out in this big wide world could find out for us.

Take care all, Patty
By Lynda
Hi Patty

Yes - I always have the sensation that I am falling forward when standing still, which is made much worse in the dark or when my eyes are shut. I always stand back a little when waiting to cross the road as I'm afraid that I might fall into the traffic - and if someone stands too close to me to talk, I feel as if I am falling towards them! Consequently I end up backing away in the direction of the nearest wall!!

Amazing how all these strange symptoms are common to us all...

By Marianne
Hi Patty and Lynda,

Yes, I experience the same feeling whenever I am standing and have my eyes closed. I start to fall forward. Funny you should mention this. I do have problems at night unless there is a nightlight on (which is always) but I just attempted to close my eyes while standing and felt myself falling forward. I shall mention this to my neurologist when I see him in September.

And should see a neurologist a few times a year. I know you do not like taking any meds; however the doctor can track your condition. I know that we can all do that ourselves (most of the time), but it's always a good thing to be under a physician's care. I usually see my neurologist 2-4 times a year, depending upon the results of my examination.

All of you, take care,

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