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 jolarson
Hi - I have given up on trying to do anything on my knees and I commend those of you that try. I call my house "the house of stools" because I have stools of all heights in almost every room in my house. It's impossible to cook without one, brushing teeth sitting down, dressing sitting down, feeding my cats sitting, laundry etc. etc. I live alone so it is important to be very cautious. As Kaylie said we just have to grin and bear it. I have learned many tricks to cope with this darn stuff but sometimes even the tricks are tough. Someone said too that walking at a pretty good pace is ok but then slowing down becomes a nightmare trying to balance and having that horrible feeling of maybe falling! On a silly, vanity note, I miss being able to wear high heels. But checking in on this wonderful site brings me peace, just reading everyones travails and knowing that I am not alone.
By DaveW
Comments removed.
Last edited by DaveW on Sat Dec 01, 2012 6:38 am, edited 1 time in total.
By jolarson
Kaylie - You said that POT cannot be passed on to our children. My doctors said there have not been enough studies on this disease to know. It is encouraging to know that you were told that this is not heriditary. This information has made my day!
By Marianne
Hi Jolarson:

The information regarding OT being heriditary was given to me by my neurologist and if you listen to Dr. Matsumoto's talk, he indicates the same, so I would hope that 2 doctors stating that OT is not hereditary would be enough for me.

Be well

By Dwight Kraai
Concerning inheritance of POT see image 6 of Dr. Bain's presentation available on this web site.

I tried to copy the page to this page but lucked out. He states 20-30% of POT have family history of movement disorder.
Further, A Family History obtained from 5-15% of patients with OT.

Certainly not a strong inheritance tendency, but, data suggest something to follow with possibly a low inheritance incidence.

As for myself, there is much ET on Mothers and her Mothers side of family. ET is not the same as POT, but, they do have some similarities.
By Marianne
Dwight: At least we can see from Dr. Bain's research that based on family histories, the incidence of inheritance of OT is low, so chances are excellent that we will not pass it on to our children. We should all look into our family histories. However, those of us with children hope for and believe that it is not a condition that is hereditary.

By MikeS
Hi Everyone
The hereditary question is one I have asked as well and was given the same not enough studies have been done.So lets do our own 'study'. How many of us have had a parent that had a 'conditon' My father had Parkinsons, coincedence?I know its not OT but any information we can throw into the mix must help.
Keep smiling
By patty
Hi everyone, I know that OT is hereditary as far as I am concerned because my mother had it, I have said this in other postings, but obviously this is quite rare to have been passed on, but at the moment neither of my children 45 & 38yrs old are showing any signs of OT (thank goodness). On the positive side my mother lived to be nearly 89 and apart from shaky legs her health & mind were in extremely good order, but I do worry that certain doctors are saying this is not a hereditary condition when I can categorically say mine is.

Take care, Patty
By Marianne
Hi All: Back to the question of passing on OT to our offspring: My maternal grandmother (who lived until 95 years of age showed no signs of ET or OT). My mom, on the other hand has a head bobbing condition, something she does not even feel she is doing; however my sisters and I can notice it. I believe that this is ET.

Neither of my siblings 58 and almost 50 have any symptoms of either ET or OT.

However, out of nowhere, 12 years ago I suddenly seem to develop tremor symptoms which remain unchanged until later on when they became more severe.
My children ages 31 and 35 have no symptoms of either condition. Hopefully they will remain symptom free of either condition and live normal lives.

According to my neurologist, ET seems to be the condition that is most inherited where the passing of OT is rare. Let's hope that this is right. I will be seeing my neurologist in September and will again question him about passing OT on to children.

Be well

By Lake of the Woods
Hello everyone,
This comment is mainly directed to Mike to say thanks for encouraging everyone to "list their location". It is so important that we know where everyone is - it can only do good things - to help give support as someone may be living close and possibly you can set up a meeting. Mike and myself know how beneficial it is to actually meet and talk to another OT person as we both attended the spring meeting and I cannot tell you how helpful it was to me, and how many times I draw on that since - thinking about everyone I met and how we shared our similar experiences. Hopefully we will get a larger crowd at the next meeting - there will be another and you will have lots of notice.

Also, I should let you know that at the meeting I met two OT people who were not on drugs - they had tried them all and decided to go off them. Dr. Matsumoto had told us that "all the drugs have side effects and that there really wasn't any drug that was real effective". So, as a result of this I decided to go off the Lyrica that I was on - as it didn't seem to be working that well anymore. I have to say that I am not doing any worse I don't think as far as the standing and walking slowly which is difficult. The big plus is that I feel better - not so tired as that was a side-effect of the Lyrica.

Everyone has to make their own decision about the drugs - I am just letting you know what I experienced and maybe it will help someone in their decisions.

Peggy Whitta
By jolarson
Hi everyone - Just want to participate in the our survey of POT heriditary. I am the only one in my family history, (that I am aware of) that has a movement disorder of any kind. My grandmother lived to be 92 and was walking fine until her passing. Same with my father who passed at 82. My mother and brother, who are both gone did not have any symptoms and my children are both physical active with no problems of our kind. So it makes one wonder why the heck I got it? I do hope some movement disorder specialist takes this research on but I'm not holding my breath as this stuff is so rare. I am anxious to hear about everyone else.
By Marianne
Hi Jolarson:

Unfortunately, because of the rarity of our OT, there hasn't been any research regarding its being passed from a parent to child or sibling to sibling. Unlike a condition like PD where the researchers followed an Italian family very far back and found PD in many generations, I'm afraid that there are so few of us that they would never conduct a study like the one they did for PD. When I started seeing a neurologist for my OT, he asked if any of my siblings had symptoms. While I looked at my siblings, I also looked at my mother. I never realized that her head bobbed up and down. She doesn't feel it and does not realize she is doing it. She has no other tremors (age 89).

However, perhaps if the questionnaire (supposedly in preparation) could contain questions regarding the incidence of any type of tremor that one can remember in any generation, it may spark a researcher to delve a little more deeply into this burning question we all have.

I have been asked to participate in a study recently which is incidentally being conducted by my neurologist, which asks if I consume certain foods, spices, etc. It is mainly being done for PSP, but those of us with PD or certain other tremors are being asked to participate as well. Para supranuclear palsy is also a rare condition (actor Dudley Moore suffered from it); however, it seems like researchers have jumped on the bandwagon and want to research it more.

From my experience, it seems like one needs a celebrity to start the ball rolling (e.g. Michael J. Fox for PD, Dudley Moore PSP). That's the only time anything ever comes to light regarding a disease or condition.

Say well :)
By irish4411
Hi Everyone!

In regard to family history, my Dad had Parkinsons, he passed away at 79 years old. The rest of my family is symptom free. I'm the only lucky one, I guess.
The doctors at UCLA suggested there may be a link between Parkinsons or possibly thyroid disease to OT.
They really didn't explain how or why they think that.

Susan :?
By Lorie M
Interesting about connection with thyroid disease. My mother, 2 sisters, 1 nephew, 1neice have been diagnosed with thyroid problems. So far none of them have experienced OT. The nephew is starting to have problems walking and has essential tremors. I may suggest he be tested for OT.

Although I have essential tremors along with my brother, mother (now deceased at 85 years) sister, (deceased at 65 years at age of other things). My youngest son also has ET since high school.

My youngest sister had been seeing many doctors for many years of some unknown disease. She had trouble walking!?! She died at age 48 in 1991 of other problems. I wish I could talk to her about her legs. (And a lot of other things).

Hopefully someone will do research on this issue. Too late for us but maybe not for our kids and their children.
Hang in there.
Lorie M
By patty
That's really interesting about Thyroid, its the first time I have ever known it to maybe have a connection to OT. I myself take Thyroxine for underactive Thyroid, as does my brother & more recently my son.

We seem to be getting more & more information together ourselves & the sooner we get some sort of comparison sheet the better, maybe we should try & create something ourselves, I have thought about this a lot but I'm not sure how to go about doing it, any ideas?

Take care all, from rainy UK
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