How is everyone?

[irish4411]

When I work, I'm on my feet and doing a lot of walking, by the end of the day, my legs ache terribly. Once I sit down, I find I'm very stiff and sore when I try to get up. You would think since I do this 5 days a week, my muscles would get used to it, but it's as if my muscles have no memory. (if that makes sense). I've tried going to the gym (for about 6 months, 3-4 days a week) working out on the treadmill and weight machines. I get the same result, just constant ache and soreness.

My doctor has had me on B-12 for over a year, I also have a B-12 deficiency. Can't say I've had any success with it but I still take it anyway. I guess it can't hurt.

Susan

[MikeS]

Hi Everyone
Gloria its with the help of everyone that this post has taken off .Nothing now seems trivial anymore we are finding out so much ,weight gain kneeling,excersise,etc etc.This is a 'family' site and in the grand scheme of things we are a small and close family as I always say you and everone I met in Rochester are my inspiration and I thank you for that.
Richard in England has a whole load of stuff re B12 and weight being sent via email to a Group site I am trying to get it all posted here .I am not sure how to get all the Brits to post here as well but am working on it.
I dont know about the exercise thing I know I have to walk etc to keep generally fit but at the end I just have to sit as my legs are like jelly and ache for ages afterwards.
Please everyone keep posting I now log on knowing there is going to be something new to read
Thank Everyone
Keep Smiling
Mike

[patty]

Hi Mike

Just wanted to say that most of the brits on the UKOT site do post on here, in fact this is where most of us started, I am Patty on here & Pat on UK site, without this site I would never have known about OT which makes me wonder how many more people there are with OT & don't even know they have it because they don't have a computer, it would be great to be able to post to a well know newspaper asking them to publicize our plight, know any good reporters??

Keep up the good work Mike encouraging us along with ideas etc. Maybe another visit to neurologist with your aching leg problem, we all get it I'm sure but its usually after trying to do too much, but yours sounds a little different, hence no one has come forward with the same condition, look after yourself, I know what you men are like, I live with one!!!

Best wishes Patty (UK Pat)

[MikeS]

Hi Patty
I have had a meeting with Max Clifford (publicist) re getting some publicity .As yet nothing has come of it but I will try again.All the emails we are getting from the UK are so intersting and imformative that I would love to see them here.If any of the UK group do read this please post on here as well.
Mike

[Marianne]

Hello All:

What a great idea about getting some of our information into the media. Like many of us, I never knew that there were others suffering with the same condition as I. Just though that along with other odd things, this OT was just happening to me, especially after seeing several neurologists who never even heard of OT!! My computer and I became fast friends after my diagnosis. That is how I found this forum. At last, I wasn't going crazy thinking that I was the only one with this crazy condition. (I'm not saying I'm glad that there are others with the same problems; however, the support I have garnered over the past years has helped me endure, just knowing that there are others who know what I am feeling). It is probably true that there are many other OT'ers out there who don't even know our forum exists. Getting it out to the public would be a step in the right direction. If the doctors and researchers don't feel our condition is worth researching, then the only voices left are ourselves. Mike, I hope that your contact will in fact come through and then perhaps we will have a voice (albeit small) in telling the world about this crazy condition of ours.

Take care,

Kaylie

[MikeS]

Hi Everyone
Have any of you given any thought about another meeting I would like to know .
The last one was fantastic and I belive if the numbers are right I might be able to get some sponsership.
Keep Smiling
Mike

[Marianne]

Hi Mike: I'd love to attend a meeting (couldn't get to the first one). It all depends upon where it will be held. Any hints on where you think the meeting might be held (location, time of year, etc). Those pieces of information would be crucial to some of us trying to decide whether we can make it to another meeting.

Thanks - Keep smiling

Kaylie

[Lake of the Woods]

Hello everyone,
In regards to another meeting - I am hoping that by January of 2009 I can start making some kind of plans to have another meeting in Nebraska, U.S.A. in 2009. I am discussing this with one of the Neurologists that I keep in contact with. Unfortunately I cannot give any more information until he moves to this location in Jan/09 and takes care of some preliminary issues.

As soon as I can I will be notifying everyone with all the details etc. as I am well aware that people need a certain amount of time to plan for travelling.

Keep up the good work Mike getting people to participate on the forum!

Sincerely
Peggy Whitta

[MikeS]

Hi Peggy
Nerbraska ? Dont know much about that place ,well except it adds up to 64 points in scrabble 14 + 50 for being a 7 letter word!
I dont mind where it is I will try my best to be there and I recomend that all that can make the trip do so I promise sitting down with fellow OT suffers and chatting and comparing notes and laughing together is the best medicine you can get.
Peggy thank you for trying to organise something again.
Keep Smiling and Posting
Mike

ps how many checked the scrabble points I bet Jeff did

[MikeS]

Hi Everyone
Ok whats happened why has everyone stopped posting?.Someone must have some news .
Mine is I am going to neuroligist next week my OT feels like its getting worse I can stand for less time than ever ,my legs ache all the time .Im stumbling when I do walk and worse than all that I keep getting outdrawn at poker!
Keep Smiling
Mike

[patty]

Hi Mike

Hope your visit to neurologist goes well, but my only concern is your poker might suffer even more if he puts you on meds because they can slow you down some what, you'll have to start playing with people like me who don't have a clue!!

We are coming over to Spain on Wednesday for a week but to Costa Blanca some 5 hours from yourself, it would have been nice to meet another OT'er, how do you find the medical system in Spain, I have heard it is quite good, if we do come over for longer in the future it will be one of my concerns (looking for property).

I don't know how you manage with a dog full time I've just had my son's for a week & nearly broke my neck over him a few times, I see what you mean about the lamp posts, better over the fields when I could let him off the lead but the weather has been so bad I could only do that a couple of times, so the lamp post got a good sniff etc.....

Good luck Mike & let us know how you get on

Regards to all, Patty

[Marianne]

Hi Mike: I think the postings have slowed down (especially in the States) since we just had a holiday (Labor Day) which kinda signifies the end of the summer. Lots of us go away on vacation for the week so you should see postings picking up next week.

I too will be seeing my neurologist on 9/15. I have lots to ask him (e.g. any relationship between thyroid and OT, can one pass OT on to their children; all the things we have been talking about over the past few months on the forum.

My OT too has become worse over the past 4 months. I must now use a scooter to get around on long outings. If I have to do any walking, I have to be sure that I have somewhere I can sit, otherwise I stay home. Since I live in NJ, I was thinking about going to AC for the day (haven't done that in years). I'm not a real gambler; just play the slots. I'm just wondering how I'm going to be able to do that with my scooter. There must be thousands of people who go their and use a motorized scooter (just how does one do that?). I'm wondering if the casinos accomodate those of us in scooters. Maybe I'll call one of the casinos and find out.

In any event, good luck on your visit to your neurologist. Later on we can exchange our experiences.

Take care

[MikeS]

Hi
Patty I dont take any meds for that reason.They totally confuse me. When I went to the meeting in April I was on Gapapentin and I was a mess .I booked connecting flights for dates I wasnt even in the country!I find it hard enough concerntrating as it is and on the meds it was impossible. I can play some sessions for up to 14hrs at a time.
My dog is old so he doesnt move to fast ..bit like me really.
As you say the part of Spain you are going to is about 5hrs away But if you ever come up this way let me know.The Doctors and hospitals here are fantastic .The hospitals are spotless and the treatment is excellent.Make sure you have insurance or your E111 or what ever its called now,just in case.
Kaylie thanks for for you thoughts on why the postings have slowed up.Good luck at the Neuroligists let us know how you get on.
Ok AC will be fine for you the whole place is totally wheel chair or scooter friendly all the slots will be accessible.When I was there last it was one of the things I noticed .They have a lot of disabled customers and they make sure that they dont miss out on anything ,shows ,dinning or gambling.The Boardwalk is also scooter friendly and you can get to most of the hotels from there.
If you PM me a list of the hotels you are thinking of I will tell you what they are like.I may even tell the story of how I got thrown out of the Trump!
Its so important that we dont stop doing the things we like to do or go to places we want to go .Of course somethings are not possible anymore.
I must admit that I dont go out as much as I did .Some days I just dont feel like it Is just all to much effort.Most of the time though I am fine and coming here to chat and compare notes is good therapy for me and I hope everyone else.
Keep Smiling
Regards
Mike

[jolarson]

Mike, I was one of those that took off for Labor Day, so no posting. I always look forward to your posts. I did something that I agonized about, flying and changing planes too! Thankfully my daughter was with me and she used her mileage on United and we went first class which made it so comfortable. But the point I want to make is that when any of you are considering flying the absolute best thing was I went as a handicapped. There was someone with a wheelchair when I checked in at curbside, took me to the gate and even took me to the plane itself! The airline stewards were aware of me being handicapped and helped me to the seat (which I could do by myself) and followed through when we landed. When I departed the plane someone was there with a wheelchair to take me to the next gate when changing planes and then I went through the same procedure. It was so incredible because I went through security, bypassing all those standing in long lines that I never could have done. I arrived at my destination without any stress of standing in any line!! So to all of you that are considering a trip where airlines are involved, just let them know you need a wheelchair. My pride was not involved because I was so grateful, to heck with pride because the lines are so long through security, checking in etc. that since I can't stand for even a minute, pride went out the window and I just continued thanking those who took me with the wheelchairs. So my agonized state for several months of how I was going to do this relaxed and I did enjoy the flights and my daughter was relieved too. The airlines do not control the wheelchair transportation, it is run by a separate company and each and even attendent was a sweetheart sometimes almost running me to the gate. Perhaps all of you have used the wheelchairs at the airport but it was a first experience for me. I had my POT handicapped tag too. And Kaylie, I am anxious to hear what the doctor has to say when you see him on 9/15. I see mine at UCLA in October and every time I go I hear the same thing, what kind of new pills may work for me! I find out more on this site than I do going to the doctor but there is always hope. I do wish that we could get more information out about POT in Medical Journals etc. I will try again when I see them in Ocotber. But then since we are such a minor known disease there doesn't seem to be much interest. But I do know that just reading this site gives me a feeling of friendship and companionship that I wouldn't have elsewhere, each of us going through the same travails.

[patty]

What a lovely thing to do to have a holiday (Labor Day) to mark the end of summer, here in England ours has not even begun!! never mind I'm off to Spain tomorrow for a little sun & sangria, lovely.

I am also fascinated by your language terminology, our words are so long winded, for example, you say line, we say queue (said q), you say cart, we say shopping trolly, maybe we could have a new word every day and I'll give you the English interpretation, its bound to be much longer.

I too have used a wheelchair when travelling to Las Vegas, it was, indeed, a God send, I hope I can manage tomorrow as it is only a small airport we are travelling from but the same difficulties arise, I am already getting worked up just thinking about it which only makes things worse, I am going to try & relax now, speak soon.

Regards, Patty