Eye related movement disorder

[lla]

After attending the meeting in Omaha, I made an eye appointment with Dr. Skelsey at the Silverstein Eye Center. Everyone there was very excited about having another OT patient. (Nancy, I can't thank you enough for your post. You were the first one to go there and it made my experience wonderful and easy!) I also have been prescribed prism glasses. I got them just before Thanksgiving and what a wonderful experience this has been. I can stand longer, am not shifting my weight, do not curl my toes, go up and down the stairs without holding rail, greatly decreased panic and an overall calmness. The tremor, at times seems to be gone, but other times I can feel it. Even when I feel it, most of the time it is tolerable. The need to get seated quickly is greatly reduced. Right now, I am working on getting my core and legs stronger. I have lost a lot of strength. I am very hopeful that this will help even more. The only complaint I have is pain in my lower back and legs. I have been told that this is because of using different leg muscles. Now I am standing straighter and have to learn to not compensate for the way I have been standing from years with OT.

I am thankful for this site and the wonderful people who share their experiences. Without this I may not have ever known about the prism glasses and experienced the relief I am enjoying.

Linda

[admin]

Hi Linda,

What an interesting story to follow! So great that the Jane and Nancy shared their story and most important that you have found some relief with prism glasses.

all the best.

[gloria]

Hello Linda : WOW, another OT person that has gotten noticeable relief with prism glasses. Certainly it is not a cure at this point but it might be showing how our eyes could be playing a disabling part of our OT neurological message system. Linda please keep us updated on how things continue to progress for you. Jane and Nancy it was so great to see you both at the meeting /research in Omaha and introducing this new eye neurological strategy to explore. Thanks, this is all exciting news, Gloria

[brittasmom]

Linda, I am so excited to read this. You are repeating my story. Everything that you have experienced with prism lens, I have done the same, and it is wonderful. We were so fortunate to have found a Dr. that was willing to listen and experiment with something that he has never heard of…..OT. I gave him Dr. Padula’s book from Jane and he received it with gratitude. As we learned in our Omaha meetings, awareness of this rare disorder is so important.

I am still working on strengthening my muscles too. I’ve been doing the physical therapy exercises that were posted on this site and it is helping….especially the lower back and hips that we put so much strain on with our tremors.

The new posting from Jenna on Functional Neurology is also quite interesting. I could relate to so much of what she wrote. It encouraged me to make an appointment with a chiropractor. I too am trying to correct my posture (I forget to straighten my knees from all the years of tremors) and I know that aligning of the back, neck and legs will help me. I don’t have pain but after a long day on my feet, my toes ache. I still have a problem with balance and struggle with falling forward when my legs are tired.

Gloria, you are so right about prism glasses not being a cure. They ease the discomfort and make life better. We can all make the best of this crazy disorder with a positive attitude and continuing to share and learn ways of coping.

Nancy

[lla]

Since my last post, I have been asked questions about my condition and glasses. I feel it might be beneficial to share this with anyone who is interested in trying prism glasses. I have Exophoria in one eye. The strength of my prism is 5. Even though it is only one eye, the strength has been split to 2.5 in each eye. They are put Base In.

Sharing is our way of finding relief. Even though we don't have a cure right now, we have each other. Thank you, Gloria!

Best Wishes to Everyone,
Linda

[brittasmom]

This may be of interest to others that are thinking of being tested for prism lens. As we were experimenting with strength, the technicians tried a stronger strength in my eye that has Esophoria and a weaker in the other. That did not help my tremors. Then we went back to equal strength of prism in each eye and my tremors stopped. As with all medical issues, this may not be the same with others, but that's how it worked with me.

Nancy

[Janevece]

Linda, how exciting!! I am so happy to hear of your success. We must continue to spread the word. Thanks so much for the post. Jane

[lla]

Jane,

Your explanation of how prism glasses has helped you is just word for word the same for me. I am even, at times, forgetting anything is wrong with me. But then, in certain situations, I can feel the tremors. Even then, they are not as bad as they used to be. I can control the panic better.

I am writing to you to let you know that if Dr. Padula ever does a study of any kind, I would like to be included. I want everyone to someday have the relief I have found.

Linda Anders