How is everyone?

[gloria]

Hello All:

I’m SO pleased with the reporting of individual experiences and the responses given in return. It is information that only can come from us, as Dr Torres Russotto said to us at the Omaha meeting we are “ resources of information”. It is good to read the different ways of maneuvering through life with OT. Also, we would like to hear AGAIN from some of our EARLIER members who have not posted resently. A catch-up please, or as Mike has requested “ How is everyone doing?”. We are friends near and far and must show our OT community to the medical world because they need to know us better !!!! As always, Gloria

[cinsim1@yahoo.com]

Just curious on how people with OT handle conversations with family/friends when they ask you "How are you feeling?"
Maybe I'm just venting a bit, but my health is excellent, and I don't consider my tremors as a sign of poor health. I know that for some of us, there are health problems along with OT, but this is just the way my body works, and that I do have limitations because of it.
Okay, now I got that off my chest. One day when I had returned to work as a teacher, I told a student that I was absent the day before due to a cold. He replied that he could tell because I was still "shivering!" LOL
Cindy

[admin]

He replied that he could tell because I was still "shivering!" LOL

funny that it's the children that are more observant than us adults!

best regards

[gloria]

Cindy:

I agree that was a great observation of your young student. With all my OT days I too get the classic “How are you feeling ? “ question. I still have not found the “one answer fits all reply". However, let’s back up a little to part of your question ‘ how do people with OT handle CONVERSATIONS with family /friends ‘............ I know that you have said that you generally try to hid your situation. I personally feel and have found in the postings of others the best way to deal with people in life (excluding 5 year olds) is to try to be open about your problem with those in your close environment. You will know how far to go with your explanation in each instance. You will be more comfortable in your surroundings if you spread the word about OT. You are an educator so you already have the skills. Thanks for the great posting , a good “venting”. Gloria

[cinsim1@yahoo.com]

Thanks for your kind words, Gloria,

Yesterday, I ran into a friend who has MS and she asked me "How I was feeling?" I felt bad about my previous vent of "How are you feeling?" comment. She is really suffering w/ MS and has young children to raise. It put my complaint into a better perspective although I'm not saying that OT isn't a "pain in the butt" at times.

I do try and let people know why I can't stand for more than a minute. I often find that they are not interested if I try to clarify that it is not Restless Leg Syndrome, Vertigo, or their eyes are starting to "gloss over" after a minute of explanation.

I quit going to the PT because she just had me stand in a corner and count. It wasn't helping, but what did bother me was that she had never worked with someone with Orthostatic Tremors and after three weeks, still didn't bother to research the condition to see what what we are up against.

By the way, my husband and I listened to the Nebraska audio posted and found it to be very encouraging. Since we don't know anyone else with this condition (except my dad), it was a great testimony from someone (other than me). I could tell that my husband was really listening!

Cindy

[Dwight Kraai]

Hello Cindy:
Your positive attitude is fantastic. OT can be as you say a pain in the b..., but, it is not life threating as is MS.

You referenced that your Father had OT. Was he diagnosed? That is of interest in that it suggests that at least in some situations OT may be inherited.
Dwight Kraai

[patty]

Hi Cindy and everyone, I was really interested in your post as it seemed that I was the only person to have inherited OT from a parent, my mother had it but went undiagnosed, she had all the symptoms we all have, at the time I didn't know what it was until I Googled shaky legs and came up wit Gloria's site, unfortunately it was too late for my mom but live in hope something or someone will come up with a reason and effective treatment in my lifetime.

I totally agree with your response of folk glazing over when trying to explain our complaint, I'm sure they think I'm making it up or am a hypochondriac, I wish it was just that simple, we have to stay optimistic and enjoy the good days.

[cinsim1@yahoo.com]

Hi Patty and Dwight,

The weird thing about my dad having OT is that I started showing leg tremors in my forties (I'm 57 now) and I would tell my dad about it, but he just seemed to ignore me like I was just being a complainer (oh, and by the way, I was complaining because I didn't know what was wrong w/ me!).
He started showing signs of it in his late seventies (he's now 86 as of today, happy b. day, dad). He would call me up (he lives in Canada) and repeatedly tell me all about how he can't stand, but walks fine. He was recently diagnosed with Alzheimer's sad to say. Even though I got it long before he did, he seems to have it worst than I do and shakes a lot more when standing. He was never formally diagnosed with OT, but would make a great poster boy for the condition because he is still the "very handsome fellow" at 86!

Cindy

[patty]

Hiya, the similarity is so fascinating, my mom also started symptoms in her seventies but just like yourself I was around forty five, I am now sixty seven and fortunately progression has been pretty slow, I am nowhere near as bad as others we have heard about, but I do push myself every day, some days are better than others and I constantly try diagnosing myself wondering what the difference is in my daily routine especially diet etc. if it wasn't for the OT and an underactive Thyroid I am pretty healthy but sometimes that can be very frustrating because I want to do so much but the OT gets in the way, when it is at its worse even cooking a meal can be difficult. Never mind we could have something life threatening which of course OT isn't and my mom lived to be nearly eighty nine and died from heart failure and nothing to do with OT.

[cinsim1@yahoo.com]

Wow, the similarities are interesting. My movement specialist, Dr. Melissa Houser at Scripps, La Jolla told me that my kids have a 50% chance of getting this disorder. I have never seen this opinion in any research that I have read, so it might just be her opinion or maybe she has access to info that we don't. Anyway, I haven't told my kids this because they are troubled when they see me struggle at times. Like you, I am very healthy, go to the gym and walk three miles along the beach a couple of times a week.
I hate being in the kitchen for cooking because my fine motor skills are getting weaker and I tend to drop or bump into things often. I'm at my very worst, when I go out to a buffet where I have to stand and put food on my plate, so my sweet husband (if he's with me) fixes me a plate. He's such a big help to me.

Cindy

[gloria]

Hi! Cindy and Patty:

You both are handling your OT in a very good way, not letting it control you. I consider it a challenge and know my limits and work accordingly. I have lived with it for 30 years , cursing it at times but have learned clearly OT is an expected part in my daily routine. I have had to separate other illnesses in my body and care for them as well. However my goal remains constant to maintain my mobility and independence as much as possible. .............. Good posting, Gloria

[Betty]

Hello all:

I am a bit late reading all the posts on this topic and found it very interesting that two of you feel your parents had OT. Both my parents had tremors towards the end of their lives, but that was BEFORE I knew I had OT. This started in 1994.

I have two grown sons; the older one doesn't have any tremor of any kind. The younger son does have an essential tremor in his hands especially when trying to do delicate tasks. I know having essential tremors does not mean one will get OT, but I am always concerned.

I think, as Gloria has said, we must learn to cope with our OT and separate other illnesses.

I look forward to reading more....

Betty

[cinsim1@yahoo.com]

Hi everyone,

I was first diagnosed w/ ET because my neurologist (at the time) didn't know about OT. My hands clearly had tremors, but more so when I was standing. So I don't know if I have both conditions or if OT likes to share its tremors w/ other parts of my body. My dad is the same way. Can anyone clarify the difference?

Cindy

[Betty]

Hello Cindy,

I think the best way to get an answer to your question would be to ask your neurologist. He/she would be more qualified to answer; however, I can tell you about me.

First, to answer your question, and I am NOT a medical person: OT involves the legs and whole body; essential tremors usually affect the hands and sometimes the head.

I started having symptoms of OT about 1994 or 1995, but ignored them because I was caring for my parents, my husband's parents and my aunt ~ a lot of stress.

I started with weakness in my legs ~ no tremors at first. I had NO essential tremors at that time. As I progressed, which took quite a few years and going through eight neurologists, I finally had a neurologist tell me he thought I may have Orthostatic Tremors.

I asked if it was like essential tremors and he said no. I asked what could we do about it and he told me he didn't know ~ very little was know about OT at that time. It was 2001.

After getting a name, I came home and immediately went to my computer and GOOGLED Orthostatic Tremors and found this website. I was thrilled!

By that time, I was having more weakness in my legs, tremors and difficulty standing; but still NO essential tremors of the hands. Now....many years later, I do have a noticable tremor in my hands and I am clumsy. I have NEVER been clumsy in my life; but I am now!

This is a looooong way to answer your question, but I, personally, don't feel if one has an essential tremor, they will necessarily have OT; nor do I feel if one has OT they will have an essential tremor. However, I have found with OT, my tremors do involve my whole body when standing or leaning on my arms, but that is not the same as an essential tremor.

I feel I have probably been more confusing than helpful , I hope that isn't the case.

Let us know how things go; we are all interested and want to be as helpful as possible.

Betty

P.S. I just realized you live in Carlsbad, CA....my very best friend lives there as well. If we get out that way, I will get in touch with you.

[cinsim1@yahoo.com]

Thanks for responding, Betty.
I think your explanation was good. My progression was very much like yours. I started w/ trouble standing and later noticed that my hands would tremor if I was typing, cooking, painting or anything else that required accuracy. My hands are more under control if I am sitting, but not always. I also have a small tremor if I have to smile for a camera (around my mouth). Probably why I hate to stand and smile for family pictures.

I have never met anyone that has OT (except my dad), so if you ever are out for a visit w/ your friend, I would love to meet you and compare notes.

Anyone see on TV this week, a segment on using Deep Brain Stimulation for people who have Alzheimer's disease? It seems to be helping a woman (only 57years old) with this condition. They are getting better results w/ those who have an early onset of this disease. One doctor mentioned that during the last 40 years, that the focus has been on the body, not the brain. So now there is a lot of interest w/ this DBS. It's been used mainly to treat Parkinson's and Essential Tremor, but now Alzheimer's. Great news, I think? Maybe, we OTers will be next for a possible adjustment to treat our tremors.

Cindy