The Orthostatic Tremor Forum (archive)

I had the wonderful opportunity to have physical therapy done twice a week at the Cleveland Clinic. I cannot tell you the difference it has made. I can actually stand and almost forget that I have OT. There are times that I forget to take my medicine in the afternoon because I am feeling so good. I can often forget that I am not like everyone else. The therapy was a miracle. When I was first tested I was told that I was "unsafe" and should use a walker or at the least, a cane. I refused, but promised to work hard. After 3 months, my test not only showed me to be safe....but in the normal range. I was given exercises to continue at home...(i often forget to do them but do feel better when I do them at least 3 times a week). I of course, also take medicine. But,I did do that before. I also had done accupuncture which I no longer do. None of my doctors had ever mentioned PT until my newest doctor....bless him.
Bobbi

I would like to know more about the Physical Therapy that has helped you so much.

Bobbi:
I too would like to hear more about the Physical Therapy you are doing? Good question Maria as one of our new members. Bobbi, it has been a while since you met with Harriet, Rita and me at my house in NJ. At that time and before your therapy you were able to stand longer than the rest of us and glad to hear that you have found therapy that makes your coping with OT even better. Have you been told to walk a lot as part of you therapy? Can you describe some of your therapies for us and does it require the use of working out on machines as well ? Thanks, Gloria

Hi Bobbi,
As Gloria mentioned, we met a while ago at her house. I was very interested in your comments and have a few questions. When did you go to the Cleveland Clinic for PT? For how long a period of time? Do they have a facility here in NJ? I'm also interested in the type of PT you do. You mentioned that your original tests showed that you were unsafe and should use a walker or cane and that after 3 months of therapy your tests were in the normal range. What type of tests did they do?
Looking forward to hearing from you.
Thanx,
Rita

Gloria and Rita, so sorry that it has taken so long for me to reply. Lots going on here. Since I saw you, I rapidly went downhill. I could not stand for ten seconds nor could I step off a curb without assistance. I was in trouble. My neuro changed my meds and sent me to PT 3 times a week. When I was finished, I was a new person. I barely know I have OT, can stand endlessly most times, and can walk steps without holding on. I am blessed and will cherish this time for however long it lasts.
As for giving exercises I would be happy to do that....but without the pictures to further explain and demonstrate the positions it might not be helpful. So before I put the exercises on the site...can you tell me if there is any way to get pictures on here? If not...I will just go ahead and enter the exercises without them and folks can ask questions to clarify.
Bobbi

Hi Bobbi

I sent you an email about how to send the photos to me and I will upload them to your post. Let me know if you don't receive the email.

After you post your information about the exercises, and I receive the photos. I will insert the photos into the post.

I am posting the exercises that many of you have requested. Please refer to my posts about my success with Physical Therapy and you will understand that I first went through intensive PT for three months. I had been tested as "unsafe" and told that I needed a walker. I told them that I was ready to work hard so that I would not need to use one. After my 3 months I was tested again and was told that I was not only "safe" now...but "normal"....and that is how I feel most of the time. I tell you this because I really believe that PT could help many of you and that the exercises that I will give you are the follow up...not the cure. Perhaps, hopefully , if you don't want PT ....these will help.

So.......here they are....and should be done in order at least 3 times a week....the more the better

SQUATS:
While standing with feet shoulder width apart and in front of a stable support for balance if needed, bend your knees and lower your body towards the floor, Your body weight should mostly be directed through the heels of your feet. Return to a standing position.
Knees should bend in line wih the 2nd toe and not pass the front of the foot.
Repeat 20 times. Hold 1 second. Aim for two sets....eventually.



STANDING MARCHING
While standing, draw up your knee, set it down and then alternate to your other side. Use your arms for support if needed for balance and safety.
Repeat 20 times. Hold 1 second. Aim for two sets.



STANDING HEEL RAISES
While standing raise up on your toes as you lift your heels off the ground.
Repeat 20 times. Hold 1 second. Aim for 2 sets. I do this lots when I'm just standing around the kitchen or wherever.



STANDING CALF STRETCH
while standing and leaning against a wall, place one foot back behind the front knee until a gentile stretch is felt on the back of the lower leg. Your back knee should be straight the entire time. Repeat 3 times. Hold 20 seconds. Do 1 set. Switch legs.



HIP ABDUCTION- STANDING
While standing, raise your leg out to the side. Keep your knee straight and maintain your toes pointed forward the entire time. Use your arms for support if needed. Repeat 20 times. Hold 1 second. Aim for 2 sets. Then repeat with other leg.



HIP ABDUCTION- STANDING
While standing, move your leg back as shown. Keep straight. Use arms as needed for support. Repeat 20 times. Hold 1 second. Aim for 2 sets. Then repeat with other leg.



STANDING HAMSTRING CURLS
While standing, bend your knee so that your heel moves towards your buttock. Repeat 20 times. Hold 1 second. Do 1 set, aiming for 2 eventually. Then switch legs.



LONG ARC QUAD ON HIGH SEAT
While seated with your knee in a bent position, slowly straighten your knee as you raise your foot upwards as shown. Do 30 times . Hold 1 second. Do 1 set. Aim for 2. Switch legs and repeat.



HAMSTRING STRETCH WITH TOWEL
While lying down on your back, hook a long towel under your foot and draw up your leg until a stretch is felt under your leg in the calf area. Keep your knee in a straightened position during the stretch. Repeat 2 times. Hold each for 30 seconds. 1 set.



YOUR DONE!!!!! I hope this helps. Your real goal would be to do as much as you can without holding on at all. I know it sounds impossible. But, perservere. The first time that I could do it all without holding on......I thought I had jumped over the moon! Some days I cannot do it all....some days I still can ace it. It's about balance....at first you feel like you're in a circus, wobbling about trying to stay up.....but then all of a sudden...wham....it happens. Miracle.

Best wishes. May you all experience the miracle.

I had been on a large dose of clonazapam....8 mg a day. I am allergic to most meds. But this dose was leaving me like a zombie and the effects would wear off and would keep getting raised. I changed docs. My new neuro wants to cut down the clonazapam and we are down to 1 mg in the AM along with 50 mg of Topomax. Then at noon I take .5 clonazapam and again a 6. Bedtime I take 1 mg. clonazapam and 25 mg of topomax. I am ready to stop taking the afternoon clonazapam as I usually forget it anyway. So some more lessening of meds will likely be done. Goal....Get me off all meds! I can dream, can't I?

Bobbi

Hi Bobbi, these all look fairly easy, some I already do without even thinking, having had a serious bout with sciaticia nerve damage a while back, I am excited to try this & will work at doing it as often as you suggest.
Thanks so much for sharing, will keep you informed how it works for me.
Shirley

Can anybody tell me how to print this, I would love to try this? Thanks

What kind of exercise do you do in PT that seems to help as I have not heard of any exercise. I also had tried many pills with no help so now I am not on anything.but
my tremors are not good either, wish there was some relief with prescriptions.

Would love a copy of these exercise and I do not know how to print this. How can we get them?

Sorry when I did send something asking about the PT did not see your other post showing the exercise, just wish I had a copy of it, would love to try them...

Hello all,

I just read the exercises Bobbi put on this site and several wanted to know how to print them for use.

I just copied and pasted all of the exercises and pictures into my WORD program and printed. They came out great! You might try that; hope it works for you.

I plan to start the exercises, but perhaps at a slower pace at first.

Betty

I have been taking physical therapy twice per week. My tremors have gotten worse. I have an appointment at the Movement Disorder clinic at Duke Medical Center. but the first available appointment is April 9, 2015. What medication do you take?

Hi geandreas,

Before I knew I had OT, I had a personal trainer; worked with her for three months, twice a week. During that time I was able to lift and press a lot of weight, yet when I would complete my session, I was so weak I could hardly walk. I didn't feel it was helping so I stopped.

Some years later (still before I knew I have OT), I had a second personal trainer and had the same thing happen. I seemed to get stronger, yet weaker. It didn't make sense. It is important to keep our core strong and do some exercise, just don't over-do as I did.

I do hope you have a good experience at Duke and get some answers, but sorry you must wait until April for an appointment. One test you should be given is an EMG. That is the one I had which was the defining marker for OT. I went to NY for my testing at Columbia Medical Center and saw Dr. Seth Pullman. I had very little wait time for my appointment.

As for medications, I have tried most, but am sensitive to all which seem to help most people. I am now taking Klonopin 2 mg daily. Neurontin seems to be the one most take and have the best results. Your doctor will be able to help you there.

Good luck and keep us informed.

Betty