How is everyone?

[Betty]

Oh Mike! Thank you sooooo very much for sending the link. Also, I want to thank Jolarson for the information you sent. I tried to access the site, but, as I said, had no luck.

Mike....you look great, and to see you standing SO still brought tears to my eyes! It must have felt wonderful. It has been sooooo many years since I have been able to stand like that; I have forgotten what it's like. However, in my dreams, I am just as I was before OT ~ truly ~ I dream of being able to stand still and do all the things I loved to do.

I hope Dr. Russotto will be able to gain something from your video and the information you gave.

I still can't believe you were able to stand so still for such a long period of time; even walking back and forth!!!! Truly amazing; and I hope it will continue AFTER your surgery.

It gives us all hope; something we need. Please keep us informed and I am sure you will be in the thoughts of everyone on this site when you have your surgery.

Betty

P.S. Wanted to tell you, you have nice "gams"!

[MikeS]

Hi Everyone
So.....where were we oh yes I remember....It is now 2 weeks since I had my bypass surgery and I have been home a week and making good progress.
Now thats out the way I know you are all wanting to know has the tremor returned ,well the great news is no it hasnt,Its a litte hard to tell for sure because I can only walk for up to 15 min at a time.I can still stand for a few minutes with no problems. Manoeuvring in confined spaces is still a big problem and I dont fee safe standing in shower but that might be psychological ....but I can stand in one place and talk to people.I will do another video as soon as I can.I have not heard back from Dr.Russotto so I dont know if he saw the original.
I have got a list of all the meds I was on pre op and will be forwarding them also.My neuroligist is eager to see me ..thats a first! I dont know if this permanant or just a temporary thing .Only time will tell I will keep you all posted.
I would also like to congratulate Peggy on her fundraising event .

Keep Smiling

Mike

[Marianne]

Hi Mike! It's good to hear from you. Your sound very upbeat and optimistic. I was hoping to hear that your tremor conditions had remained as they were after your attack and prior to surgery. Let us know what your neurologist thinks is happening. I'm sure all of us are waiting for his opinions. I will be speaking to my neurologist (a movement disorders specialist) to get his educated opinion on why you had such a change in your tremors. Until then, I wish you a speedy recovery!

Stay well and always keeping smiling,

Kaylie

[gloria]

Hi! Mike: So glad to hear your surgery is behind you and recovery is good!! Everyday it was a routine for me to check the site to see if there was "news from Mike". Whatever is going on is so interesting and hopefully the doctors will have a few clues to work with. Nonetheless keep up the good work and anxious to hear more speedy recovery reports. As always, Gloria

[Chris]

Hi Mike
Glad to hear that your operation went well and that you are recovering nicely. I am looking forward to hearing what your neurologist has to say about the change in your tremors.
Keep on improving.
Chris

[jolarson]

Mike - As Gloria said, I too looked everyday for "news from Mike" and so happy the surgery is over and you are home. We will all be waiting to hear what your Neurologist has to say. Have a speedy recovery and "keep smiling".

[Joan]

Mike, so good to see your post, I have been away for awhile but was anxious to see how you were feeling. Pretty awesome video as well. Glad the surgery is over and glad you are feeling much better and hey, what about being able to stand longer, such a bonus.
I have had a bad head cold for 3 days and find I am standing much longer, not a lot, just a bit, I'm not taking any medication. Maybe we all just need to get sick!!

[MikeS]

Hi Everyone
Sorry for wierd question ,Has anyone who reads this ever had heart attack or heart surgery?....but at the moment I am looking for clues to why my tremors have stopped and give this info to my neuroligist.
Keep Smiling
Mike

[Betty]

Hi Mike,

I think everyone on the forum has been waiting to hear how you are doing and if your tremors have returned. You answered those questions; and I think we all feel such a relief that your surgery went well and was so successful.

It seems you received a BONUS ~ in that your tremors have ceased since your heart attack; perhaps due to the medications you are taking. However, I don't think any of us would wish that to happen to anyone; and you may just be unique in that way. We will be eager to hear what your neurologist has to say about this interesting situation.

I do hope Dr. Russotto has/will view your video and he will be able to garner important information for his research.

I am to see my neurologist the end of the month and am sending her an email with the link to your video so she will have the opportunity to view it before I see her. She is very interested in OT; and they don't see that many patients with OT.

She is in the Movement Disorder area of Shands Medical Center at the University of Florida in Gainesville, FL. That is where Dr. Kenneth Heilman is on the facility, and is the neurologist who realized OT was a rare and different condition and named it. That was 20 plus years ago.

My neurologist, Dr. Irene Malaty was trained by Dr. Heilman.

Keep us posted and when you feel up to it, make another video.

Good luck!

Betty

[MikeS]

Hi Everone
Most of my working life was I was in the movie business and my favourite actor has always been Robert de Nero I love all his films ...The Godfather
Once upon a time in America Deerhunter ,Men of honor....to name a few .There was one film he made that I thought was one of the saddest I had ever seen .....I think some of you will guess where this is going...That film was Awakenings where he plays Leonard Lowe The tag line of the film is 'There is no such thing as a simple miracle'
So as you all know I had some heart problems and surgery ...and during all this my tremor went...well sorry to say its back I havent said before because I wasnt sure it was coming back the same ,well it has now.It is back totally and I must say I havent missed it I guess I should be thankful I had a reprieve just after op so I had one less thing to worry about.
I am not sure whether some of the meds I was on in hospital have been stopped I had a list but I need to see my neuroligist to go through them all to see what ones were stopped..Any way this isnt a pity party just a note to say how things are.
Peggy Ill send my superhero suit you knitted for me back for safe keeping.....Im just back to Mike Teddy Bear Legs Senker again.....it was itchy round my bits anyway!
Keep smiling
Mike :)

[Betty]

Hi Mike,

It was good to hear from you and to know your surgical procedure went well, and you seem to be improving daily; but sooooo very sorry to hear your tremors have returned. At least you had a few weeks "tremor free". I/we had all hoped it would be a permanent situation; but we don't always get just what we want.

Perhaps your neurologist will be able to give you more information as to how or why this happened. I did send the link to your video to my neurologist ~ whom I shall see next week ~ so I will have an update for her.

Do keep us informed as to how things are going; we are all intersted ~ whether you are a "super hero; in the suit Peggy knitted ~ or just our Mike with Teddy Bear Legs!

Stay positive.....

Betty

[Marianne]

Hi Mike: Glad to hear your recuperation is going well; not happy to hear that your tremors have returned. Yes, I do know the Di Niro film you refer to in your posting. Your tremors disappearing gave us all some glimmer of hope that perhaps there might be an answer, but alas, it was not meant to be. I will be seeing my neurologist next month (his specialty is movement disorders) and will be giving him a brief description of your disappearing tremors to get his professional opinion of what he thinks might have happened.

Take care and always keep smiling!

Kaylie

[Lake of the Woods]

Hi everyone and especially Mike,
I was so happy to see your video and really had a lump in my throat watching you stand. Now I am reading that your tremors have returned and I have to tell you that you have been in my thoughts daily dealing with this....one day it will happen. I was glad to read that it sounds like the heart surgery went well and I hope you are looking after yourself now that you are all fixed up.

You can keep the hero suit - anyone who faces a daily struggle and maintains the cheerful attitute like you have is a hero in my books.

In closing I will say that I am sure a day doesn't go by that I don't think of at least one of my OT friends that I met at the meeting. It is hard to explain to people who weren't there what a special friendship came from meeting each other. I hope that someday when we have a chance to "do it again" that there will be more OT people who come and experience what I am referring to.

Sincerely
Peggy

[Vallis]

I was diagnosed three months ago with OT after more than 10 years of symptoms which were dismissed as either exaggeration or simply put into the "too hard basket". I would be interested to hear from others who have multiple "morbidities" (isn't that a GREAT word?). I have had a couple of slight strokes and after brain scans was told that there had been no permanent damage. I had surgery for a totally blocked carotid artery in 2004 and a heart attack which led to a stent implant in 2005. I also have peripheral neuropathy.

When I was tested for OT, my tremors were rapid and were visible and I also froze after resting between tests and then trying to move into position to resume. All this was grist for the mill for the researchers who filmed and recorded the session.

My neurologist confirmed that I had severe tremors and also peripheral neuropathy. He believed that my strokes HAD damaged a part of my brain called the (pedunculupontine) which controls movement and balance. I started on Lyrica and am now taking 150mg twice a day. My improvement was immediate and amazed my husband and friends and of course the researchers too. I can now stand to cook, hang the washing on the line, stop to speak to friends in the street, do the housework without assistance, and most surprising of all, play golf. Also the severe neuropathic pain has almost disappeared. I can't really walk a straight line - I swerve from side to side - but I feel I have been given a new lease on life.

My neurologist, Dr Rob Wilcox, and other colleagues are doing research into OT, specifically freezing - when does it occur? is it similar to the freezing of Parkinson's? etc.

I am thrilled to bits. I would like to hear from others with OT who are taking Lyrica and who also have other complaints. It is hard to know where one condition ends and the other starts and what effect medication for one could have on the other. I would also like to hear of any side effects they have experienced.

Cheers for now

VallisVallis

Posts: 2
Joined: Sun Jun 21, 2009 8:03 pm
Location: I live in Pittsworth, Queensland, Australia
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[MikeS]

Hi Everyone
My nueroligist sent me this email which I think is fantastic because it means OT is getting some sort of reconition.....'.Mr DeMille im ready for my close up'
Keep Smiling
Mike :)

Dear Michael:
With your kind permission, I'd very much like to present your case in our next
neurologist's reunion on November 25th. Dr Campos (the movement disorders expert
I told you about) will also attend so I hope we will have a fruitful discussion.
If you give me your consent to do so, I would like to ask you a favor. Could you
do another short film of your tremor while it is present, just showing us
briefly (in a similar fashion as you did in your You Tube film) the tremor in
your legs while standing, and how it spreads to your arms when you lean on the
chair. You could either send it to me by mail (if it's not too large) or upload
it to You Tube again and tell m.e where to find it.

Thank you so much, I'd be very happy if this worked out.

Best greetings

Jonas Teubner