Phobia and OT or only OT ??

[Dutch]

Hello all of you, My name is Petra

I shall start with the beginning of all my troubles that started in 2009.
On Jan 15 2009 I had a knee replacement. It was a great succes. I was walking almost immediately
I was in rehab for 3 weeks and it was wonderful to walk without pain because that knee had been hurting me for years.

In the end of October or beginning of November of the same year I went for the first time that year to my favorite park with my binoculars to look for birds. That park is pretty wild . It has a lake in the middle and a path around it. The voluteers keep the paths pretty clean. I walked very slow because there could be a rock or root where you could fall over. I was almost at the end when suddenly I fell. When I fell the thought went through my head "Oh no,not on my knee!"
Luckely I did not fell on my knee and I did not break a bone and somebody who was passing dragged me out. I had blood on my hands and legs because I landed in a thorny bush. I wiped it off and went home. I certainly was not happy that I fell but nothing happened to me and I was OK,

A week later I was going to the drugstore and suddenly I could not go on a stoop 2 inches high.
I could not lift up my foot. I was stuck to the pavement. A little further up was some kind of pole that I could grab on to and then stepped on the sidewalk to the drugstore.
That was the beginning of my misery (a book comes to my mind with that name Haha).
I can fill pages full of my miseries but I will not do that ofcourse.
I used to walk long walks in some of the parks along the Saddle river. I was just by myself and a tractor came my way who blow the leaves off the path
I saw him coming and the man pointed with his hand for me to go off the path and I could not step one inch down on the grass so that he could pass.I kept standing there and finally he went around me. I started to use a cane and trying to go up and down steps,up and down etc. Sometimes I thought I got better but then it got worse again.

I think most of you have read "Dennis Stanbridge talks about Living with Orthostatic Tremor" on the internet.He talks about his wife having OT
There is one sentence in here that made me think, he writes: "Or there may be a "freezing up" of the legs,requiring someone else to provide support for the OT person to get going again.
This started to happen to me more and more and it became terrible embarressing.
I became more and more fearful. I parked in front of the healthfood store. I got out and hugged my car (I still do hug my carbecause of the fear of falling)I only had to cross the sidewalk to go to the door and I could not do it. I had to ask strangers if I could touch them so then I could walk again. They always said "Yes" but I knew that they were thinking "That woman is crazy!!"
That happened again and again. I had no help,I am a widow and have six children between 47 and 64 who live all over the world.
I came out of the post office and a man came in. He must have looked at me because he came out again and I was plastered against the wall not daring to go to the parking lot. He talked to me in a loud voice that I was ruining my life and there were people who could help me and he mentioned a bunch of professionals .I appreciated that he gave me advise etc and finally made it to the parking lot, then I suddenly could not get to my car and I had to ask a lady if I could touch her so that I could then walk again.When I got in my driveway I had a lot of trouble getting to my frontdoor. I had to grab branches of bushes to get me to the door. I did have a cane but it did not help.

I call all of this "My Phobia" I did not have tremors yet. I still think that all this has something to do with my fall.. However "freezing up"of the legs and needing somebody to help you seems to be an OT problem.

In Sept 2011 I moved to an other county, an hour from where i lived which is very rural and myoldest son and daughter in law live only two miles from where I am. I live in a retirement community. The trouble is that right now they are looking for an house in Egg Harbour township two and a half hours from here Their only daughter who is a schoolteacher after been married eight years, is getting a baby. It Seems that they sold their house already and are looking for an house over there so when the baby comes,they can take care of the baby when their daughter goes back to school. I am happy for them ofcourse but I just don't feel that great.

I got the tremors in November or December 2011 after my move. I started with small shakes and idid not know what it was. Maybe anxiety but I thought "It will go away" Instead it slowly got worse. I tried acupuncture but that did not help at all. Not so long ago I went to a neurologist but he did not think I had it. He did not want to diagnose it. As a matter of fact he did not do much at all. Just told me if I had it that I was doomed. I agree that indeed "it is not much fun"

I walk with a walker.and walk for several miles in the woods if the weather permits. I stand still with the walker in my hands and talk with some people who walk their dogs in the woods.
I make sure that I get a shopping cart when I am in the p-arking lot of the grocery store. When I have that in my hands I am slow but normal. Since I have that walker (I lift it up in the back of the car) I don't have to touch anyone anymore but when I have to go to a new doctor then I go there some days before to see if it is easy to get in the door. I am trying to get it diagnosed. I have a plan. I have tremors through my feet, legs ,stomach,chest and sometimes in the back of my throat.
My daughter from CA tells me that I did not have a phobia but it was OT all that time.
Really? Without tremors?

I don't understand myself and nobody else does either!
Petra

[Blossom]

Hello Petra
Thank you for sharing your story. I am sorry you have had such a difficult time but really appreciate your sharing it.
As others on this forum have described it is not possible to diagnose a person over the internet. You need to see a movement disorder specialist who can look at the entirety of your situation and symptoms. There are multiple disorders which have symptoms such as gait ignition failure, gait freezing and tremors. Also people with OT may have other conditions as well, and may be taking various medications for other disorders which may cause or exacerbate symptoms. It is not a good idea to make assumptions based on a few symptoms or someone else's situation. Too easy to make a mistake - an expert is required to get a correct diagnosis. It can also take some time to find a doctor who is prepared to listen and to look at your total situation and is familiar with OT and prepared to do the right testing. Is your doctor arranging any additional tests for you? If you are not satisfied with what has been done so far another opinion may be helpful.
I am glad to see that you are still getting out and about with your walker as an aid - you haven't been stopped in being social. Fresh air and exercise and talking to people is wonderful.
All the best
Blossom

[Dutch]

Hi Blossom,

Thank you so much for your answer.You are right,it could be something else.
I DID think about that, that's why I said I am 95% sure that I have OT.
I did not go back to that Neurologist because I felt that he was no help to me at all.
I am not on any medication. My blood test came back "perfect"
My new family doctor, who I know talked to the neurologist, told me "You don't have it"
What does she know?

However I have now an appointment on April 25 with Dr Cheryl Waters of Colombia Presbyterian
hospital in NYC My daughter Renée who lives in Concord MA has a business appointment in NJ on the 26 and told me that she would bring me to NY on the 25 of April. I called the hospital and made the appointment. Gloria went to the same doctor. Renée is the one who found the OT website.

Hopefully, I will know for once and for all what I really have!!
Petra.

[Blossom]

Hello Petra

I am so pleased that you are following up with a different doctor and hope that she is able to help you with an actual diagnosis. The not knowing is so difficult.

Good on Renee for finding this website and also for taking you to your appointment. It is wonderful to have supportive family members.

Best wishes on your quest.

Blossom

[gloria]

Hi! Blossom:

Always good to hear from you , often wonder how you are doing? Hope you have read about the meeting in Sidney, Australia June, 22, 2013. Meeting with other OT people is a remarkable experience just to be with people who UNDERSTAND and I do hope you will be able to attend. If you have not read about it already click on Board Index for more info. Our member Sueb is responsible for organizing this event.

You have always taken a strong , realistic position in dealing with OT and that is the way to go. All the best, Gloria