The Orthostatic Tremor Forum (archive)

Hi. I was diagnosed as having OT about 10 years ago. Recently embarked upon a program to increase my core strength. Can now stand while cleaning my teeth! Still have problem but life is looking better. Will certainly continue training regime.

Hello!

I know how impotant it is to keep out 'core' strong; what are you doing to make sure you have a strong core? I know exercise is best; do you have specific things you do? I think all of us might benefit from what you find helpful.

Betty

Hi Betty
Just saw your post and thought I might reply to you as well. Core strength is definitely necessary to help us handle our tremor. I have been working out at a gym the last few years and I have really noticed quite a difference in my strength.
I do about 35 to 45 minutes of interval cardio...... usually on the treadmill and then a lot of core exercises. I had a personal trainer give me a wide variety of exercises to do sitting on a stability ball using stretch bands and weights. I also do quite a lot of mat work using weights and balls plus a lot of stretching. I really enjoy doing all these exercises and usually feel so much better after I have done them. Sometimes I am a bit sore the next day but I do try to do them at least three or four times a week. The down side of all this is I find that all these exercises haven't really helped my tremor....can't stand long enought to brush my teeth..... but have stopped my hip, back and stomach muscles from hurting so much when I am forced to try and do more standing than I would like. I never really realized how much of a benefit they were until we went on holiday for the month of November. We drove down to Phoenix, Arizona which is a three to four day drive from here. We had a wonderful time but only were able to work out a few times in the gym at the condo and unfortunately it didn't have very much of the equipment I liked to use. Needless to say by the time we got home I was quite sore and stiff and also found my tremor so much worse. I am somewhat back on track again but it is a slow process.....almost like starting over but I am already feeling so much better. I did use my wheelchair quite a bit when there were no power carts available for all the fantastic shopping and when we were sightseeing. I propel it with my feet so I am still getting some exercise when I use it.
Hope this helps a bit about core exercises. The best thing to do is to get a trainer at a gym and they will tailor a program for your specific needs.
Hope you and everyone have a very Merry Christmas and a wonderful 2012.
Chris

This along the same lines of exercise, but specifically about your comment, Betty, about using your wheelchair, and using your feet to propel it. Does that work well with any wheel chair? I have heard that propelling a walker with the seat is not safe? Do you know if using the walker in the Export chair style is safe for propelling with feet?
I'm still walking some, use a walker with a seat for shopping, and I find it so natural to just be sitting in the aisles and cruising from rack to rack using my feet. I only do it for a few feet at a time with the walker, because the wheels aren't made to turn, so I have to stand up, turn the walker and then sit back down. For now it works ok, but I can tell a wheelchair is coming soon, at least for shppping situations. I would prefer self propelling in a wheelchair, for the exercise and for the sense of independence.
Thanks for any input from others in this area.
Marlana

Hi Marlana

I use a regular wheelchair that can be moved by the arms (two big wheels and two small wheels) but I took the footrests off and use my feet to propel myself. My husband got tired of me turning down social engagments so decided that we should buy one. I push it when I want to go somewhere quickly or in the parking lots (like a walker) but when I want to shop and look at things I sit down. It is super .....as long as the aisles are wide enough that is. I also enjoy it when I am at social events as I can manouver very easily amongst the groups of people while still holding my glass of wine. I tried a walker but didn't like the fact that I had to keep getting up to move it around where I wanted it to be plus I didn't find it as comfortable. The transition of sitting to walking can be difficult at times for me.
Hope this helps a bit. I wouldn't be without my wheelchair as I now enjoy shopping again....maybe too much!
Take care
Chris

Thanks Chris, sorry I think I thought your message was from Betty. The way you talk about the wheelchair makes it sound mighty appealing to me, these days. I really have been surprised at how much relief the walker has given me, and how little it bothers me to use it. I thought I would feel more "embarrassed", but the relief of being able to sit out weighs my feelings of wanting to look normal.
Today was a rough one for me. I'm a choir director for our local senior community. We sang in our clubhouse, very familiar turf for me. Today was NOT our event so I had no control over the little things that I have come to depend on; my stool always being where I need it while I'm directing, lots of pillars to lean on (these were covered in Christmas decorations today) and people knowing me and used to me constantly looking for something to lean on or sit on. So, I learned that even in a familiar place, I need to have my walker or something.
The other day, we stopped on the way home from a familiar event, I didn't tkae my walker, because I don't need it much there. But, we stopped unexpectedly to run an errand, and though it was a simple thing for most people, just an in and out type thing, possible waiting in line for something or wandering around the store waiting on someone to get something... this was out of the question. I stayed in the car. It was a music store, one that I used to love hanging around in and looking at all the cool stuff. Now, now way.
So, Now I'm seriously looking into wheelchairs, and portability. I don't drive, so that's an issue to be able to get one that works, but is very portable. The only other alternative would be to actually buy my own van so people could drive me around in it... wow, that seems like a huge mountain right now.
I will go look at the forum on equipment and see what others have written about wheelcharis and such, and I am interested to know how people are making this transition, what works and what hasn't.

Thanks so much for all of you being here for each of us.
Marlana

Hi my name is Dottie, new member but not new with OT just did not know that it had a name until my new doctor said I had OT October of 2011 even though I have had it for over five years going to many, many doctors I was not going to give up , every doctor said I had some thing else with another name, also after going on Gloria's website I felt like I wrote the post that many of you had written, it was all the same things I was going thru. Thank you Gloria for taking the time to get so many people together , maybe we can find a cure some day. My doctor started me with Clonazepam .05 2 x a day for two weeks I felt that it did not help me and sometimes only made me worst, than she put me on Sertraline 50 Mg in the morning which made me a zombie and all that I wanted to do is sleep, and really had the shakes I tried it for about two weeks, than changed to 1/2 pill before bedtime and did nothing for me other than make me very lazy, which is not me as I am a very active person, going to the gym four days a week, and have not been to the gym since I have taken the pills, I now asked the doctor to take me off the pills completely and am starting taking chinese herb pills also acupuncture, have had three visits will try ten to see if it works or not, I was doing acupuncture before but for a bad shoulder which helped a lot. I will keep you informed on what happens with that , I know medical insurance does not help but I am treating myself to ten visits, I deserve to give it a try. I live in Bradenton, Fl. and if anymore wish to email me that would be fine, like to find people also in my area. my email address is dottiesport@verizon.net . Wishing you all a Merry Christmas and seeing a cure for all of us in 2012, we cannot give up.

Hello Dottie,

So happy to see you were able to get ON the forum. I think you will find so many others who will have information to share.

You may have seen on the forum we have been accepted for study by NORD (National Organization for Rare Diseases), thanks to the hard work of Peggy from Canada and others. Try to find that site and you will be able to read about all that was done to get us into the group to be studied.

I hope you will keep all of us informed as to how the acupuncture and herb pills work. Looking forward to hearing from you.

Oh yes....if you can get back into your profile, please add where you are located so others will be able to locate you. There may be someone else closer to you than I; but we aren't that far apart.

Wishing you a Merry Christmas and a Happy New Year!

Betty

Hello all.....guess I have only been aware of what I now know as OT for about 3 years .Was diagnosed 2 weeks ago ....what a relief to have a name and realise it was not just something in my head and imadgination ,that I was hoping would go away if I just got a bit fitter.
The comfort I found when I googled and found Gloria writing everything I felt, it was like coming home!! and I wasnt alone ,just had to email her and express my gratitude !! once I get my head round it all, I will be back and get into the forum ...in the meantime I am reading and absorbing as much as I can
I am 67 ...live in Wellington New Zealand ...full time artist ...sculpt in clay and caste bronze
have a loving Husband 3 daughters and 8 Grandchildren all who have yet to understand `my` OT
but guess I must first ?
Thank you all for being out there ....Di Di

Di and all my OT friends:

Di, I’m happy you posted and introduced yourself on the Forum as I suggested in my response to your email. It is a pleasure to know that we have a very talented artist as a member of our OT community. Perhaps you could post pictures of some of your work. I see that you gave your location with your post however it is important that you go back to your registration profile and post it there.( just state or territory and country) is enough. People from New Zealand will be able to contact you through the member list. We do have a number of OT people from NZ and perhaps you can establish a support group. Hope this is a reminder for everyone who has not posted their location on their profile page please do! Having the opportunity to meet with OT friends is the best medicine in the world. To prove my point just read the posts after we have had a meeting and how those attending posted such positive emotional feelings of better understanding of OT including the initial feeling of loneliness that first plagued us when we received our diagnosis of OT no longer was present. Another point of interest our demograhics are helpful to researchers as well.

As always, Gloria

Hi my name is Pat and I live in Olinda Vic Australia. I was diagnosed with OT 2 years ago by a neurologist after being sent to a surgeon because I have cervical stenosis and he wanted to operate,I have a friend who is a doctor and she suggested an opinion from a neurologist. I didn't go ahead with the surgery as the neurologist said it probably wouldn't help my tremor. He sent me to the Alfred Hospital in Melbourne where they did tests and confirmed I had OT. I went on a six month trial of Botox injected into my calves (along with 7 other people with OT) this made no difference to my symptoms. After I stand up I can stand in one spot for a maximum of 30 seconds, the symptoms appeared gradually about 6 years ago and I got brushed off by GP's until my diagnosis. I find this condition very frustrating, I am 68 years old and the condition has worsened over the last 18 months during this time I have sold my house, bought a house with my daughter and am living with her and her 3 year old son. I worked full time until 3 months ago as a support worker for people with an intellectual disability and psychiatric problems (very stressful) I went to my neurologist yesterday and he has started me on clonazepam I took one last night and today I feel quite out of it and ver tired I hope this feeling doesn't continue as I am used to a very active lifestyle this afternoon I have spent in bed!! I will continue to inform you all how I am going if there is anyone out there who lives in Melbourne I would like to have a chat with you

Hi Pat,
Welcome to the forum. I have heard good things about Clonazapam, I hope it works well for you. I'm working my way down the list of possible meds, and that one is likely coming up soon. I had not heard of Botox for OT, but have heard it is showing promise for migraines, which I have, plus OT. I have not tried it for either at this point, and don't want to at this point, either.
I have to agree, OT is easy to get frustrated about in daily life. I've had it very mildly for about 15 years, but only in the past nine months has it really gotten more severe. I'm hoping this "free fall" will stop soon. Every day, I'm just shocked at how much less I'm able to do on my own.
So, know that you are not alone. One thing I'm working on each day is to be thankful, truly feel gratitude for all I CAN still do. These past few months have been one loss after another, which sounds like what you've been dealing with, loosing your home, and now living with family. I'm planning a move as well, from the most wonderful place I've ever lived, to some place that is wheelchair accessible.
Today, I am thankful for my ability to stand up for a few seconds and be somewhat ok while I'm leaning against something. I'm so lucky to have supportive friends around me. I'm blessed to have a cat that loves me just because I do what she wants ... sometimes.
I'm so glad I have had a life time of learning how to live with a disability (I'm legally blind) so I understand the process of learning how to compensate and find new tools for living my life. I know I'll be ok, maybe not the way I have lived the first few chapters in my life, but now I'm starting Volume 2 of my life. I didn't know, or ever imagine I would be needing a wheelchair accessible apartment, or a wheelchair, for that matter. So, I'm in an adjustment period, once I get moved, and I learn how to deal with life on wheels instead of feet, at least sometiems, then I'll be up and moving again. I haven't lived all these years to give up now.
One final gratitude: I'm truly grateful to have a condition that is relieved completely or mostly, by sitting. That means that I do feel comfortable and I can sort of forget about things while I'm sitting. That is such a relief.

Marlana

Hi All,

First, thank you Gloria for starting this website and providing support and information for all of us afflicted with this frustrating and maddening disease.

I'm Suz from Chicago's western suburbs. My symptoms began about 11 years ago. Doctors were stumped so with the help of google I self-diagnosed, then followed up with neurologist Tanya Simuni from Northwestern Hosp. She started me on .5 mg of clonapin and I saw her for years. I once saw another neurologist (actually his practitioner) who put me on neurontin. She said clonopin is only for short term use and I could develop Parkinsonism disease from using it long term. Neurontin did not work so I went back on the clonapin on another doctor's advice. For the last 6 years I have been seeing my DO for my OT . We have disucssed other drugs but ultimately the clonapin seems to be the best. This year we upped the dose to .10 mg., not because my symptoms worsened but because .10 mg lessened the symptoms I have. Since being diagnosed, I've also tried acupuncture and Chinese herbs, to no avail.

Eating more carbs and sweets does seem to make it worse, as does lack of sleep and not keeping hydrated. Sometimes if I eat simple carbs too late, I get nocturnal leg/foot cramps, for hours, sometimes in both legs/feet, in multiple places. Sometimes the simplest tasks seem monumental and exhaust me and I literally collapse. Sometimes when I'm in a public and trying to maintain a normal posture, I break into a sweat because it just takes up too much energy. I wonder if body type is more prone to OT. I'm predominantly an ectomorph.

I do want to mention that In 2005, I went to a 3-day intensive, supposed life-changing seminar. (OT was not the reason for my going.) When I arrived home on the last day of the seminar, I noticed I was able to stand still, with no tremors. This lasted a day or two and then the tremors returned, but it was very curious.

I had surgery in January of 2000, the year my symptoms began. Could it have been the anesthetic? Could it be all the amalgams in my mouth? There are many. Also, as a child, I played with the little balls of mercury whenever a thermometer broke. Thought that was great fun. Post OT diagnosis, I had breast cancer in 2006 (OT was much worse during chemo).

Among other things, I'm thankful my OT is not getting worse, for my 2+ granddaughter who keeps me active, and for my passion for knitting, which I could SIT and do all day long.

God morning Suz and to all others who have posted here.

I read with interest all posts on this page; and noticed I did not answer some of those posted after I had written some time ago.

First, Suz, I found it interesting you noticed eating more carbs and sweets does seem to make your symptoms worse, as does lack of sleep and not keeping hydrated. I keep myself VERY hydrated, but do love my carbs. I also suffer from severe leg/foot cramps on a daily basis. I take potassium twice daily to help; but they still occur.

I can also relate to your discription of doing the simplest of tasts; which do seem monumental and are exhausting to me as well. It takes sooooo much energy to maintain my balance and remain in an upright position, by the time I get home, I am totally "wiped out" and go directly to my recliner to recover. There have been times I will fall asleep, due to sheer exhaustion.

I find I am going out less and less (which is not good), but just too exhausting for me at this point.
I have taken almost every medication suggested, but have been unable to tolerate them because I am very sensitive to most medications. I was put on Klonopin (clonazepam) ~ 2 mg. twice daily ~ which I was told was a mega-dose. I have decreased it by one-half and am not having the side effects I was experiencing. But, I do find my tremors are worse; however, I am learning to cope with things as they are.

As you said, I try to be thankful for the things I CAN do rather than focus on the things I can no longer do.

Now....I would like to back up and address a post from Chris. We had discussed exercise, which is so important, and core strength. I must have missed that post earlier. I am now at the point I can do very little as far as exercise. All must be done sitting, which I do here at home.

I know walking is one of the things suggested we all continue to do; but I am now at the point I can no longer walk with ease, so that isn't an option for me at this point.

You also mentioned getting a trainer; I have gone that route twice. I have had a personal trainer to taylor exercises for me, but the first time was before I knew I had OT and she was working me much too hard. That lasted about three monthsw, three times a week, two hours at the time ~ totally exhausting. The second time was a bit better, but still exhausting for me. Now, as I said, I exercise at home.

I will continue to watch for other posts and answer them in a more timely manner.

Everyone....stay positive and try to stay active.

Betty

Hi Betty
Nice to hear from you. So sorry to hear that you tire so easily now from doing simple tasks and exercising has become much more difficult. I too tend to get really tired if I push it too hard. I have been working out with a trainer the last few months at our local gym and she has been starting to take me out of my comfort zone somewhat. She now has me standing for some stretch band work......only briefly...but I am managing to cope. Needless to say I almost collapse on the bench after but I can do it. My core strength has greatly improved and my hips, legs and back don't hurt anywhere near like they used to. I also do some cardio everyday but mainly I find the weights. bands and stability ball the best workout for me.
Some days my tremor seems to get even worse if that is possible and I am trying to figure out what triggers it. I know for a fact that stress, tiredness and being too hot are the main triggers. I have had to forego my hot tub most of the time now as afterwards I really struggle to even walk around properly.
I could go on but just wanted to say hello ........I enjoy reading the posts. I try to keep really busy and use my wheelchair whenever I go shopping or out with the grandkids, etc. It keeps me happy and I don't have to struggle to stand. I now actually enjoy shopping again. I still do get funny looks when I propel myself around with my feet and then later on get up and push my chair out of the store to the car but who cares.....it is my life!!!
Take care and I will try and post again soon.
Chris