How is everyone?

This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Hi! Mike:
I too have been concerned that we have not heard from our “champion” of humor and positive spirit, and you have presented your situation in Mike’s genuine fashion. I wish you speedy recovery and remember you have a large group of friends wishing you the same. My very best and kept us posted, Gloria
Chris
Posts: 91
Joined: Sun Dec 26, 2004 2:28 pm
Location: Okanagan Valley, British Columbia, Canada

Re: How is everyone?

Post by Chris »

Hi Mike
Sorry to hear of your problems and I wish you a speedy recovery. I find it very interesting about your ability to stand longer when you are on blood thinners or whatever wonderful drugs they have you on. I have had blood thinners in the past myself (clot in the lung) but not since I have been diagnosed with OT.
Keep positive and let us know how you are doing.
Chris
sequimbea
Posts: 8
Joined: Sun Mar 08, 2009 7:15 pm
Location: Sequim, WA

Re: How is everyone?

Post by sequimbea »

Well, I keep getting lost in cyberspace, so I'll try once more. Went to see my neurologist last week and we adjusted the timing on my meds. I say "we" because I prefer to be a partner in my health care. Also went to physio for evaluation of balance and gait. I start the actual work tomorrow. And I walked for 1/2 mile, hoping to build up my strength. When I walk, my feet will cross over one another without any warning. Does anyone else do this??
Thanks for this site!

Bea
sequimbea
Posts: 8
Joined: Sun Mar 08, 2009 7:15 pm
Location: Sequim, WA

Re: How is everyone?

Post by sequimbea »

I have been on Clonazepam and Miraplex since my diagnosis, and doing well except for the sleepiness. I talked to my neurologist about changing the timing of the meds. Instead of taking Clonazepam .5 mg. twice daily, I am now taking .25 mg. four times a day. Yesterday, I got busy and forgot my two midday doses. The result was a very bad episode of my legs collapsing. So the moral to that story for me is that the med is helping, and I have to be more careful and take it on time.
Bea
MikeS
Posts: 110
Joined: Wed Mar 19, 2008 2:51 pm
Location: Marbella Spain

Re: How is everyone?

Post by MikeS »

Hi Everyone
Just thought I would give you an update I am now in the 3rd hospital since my heart attack (doing a mini tour of Spanish hospitals) This is the one where they do the surgery Im still all wired up but actually feel pretty good .I have my computor and loads of films and of course I play poker when Im bored.
So I know you are all wondering about my OT ..well I know Im on beta blockers and loads of other things but I can stand in one place now for as long as I need to ...no tremor at all just an ache from standing to long....there is a but...it doesnt work in confined spaces or if I just take a couple of steps. I still have to sit in shower or sit if move round room ,but if i just get up there is nothing or if I walk round 'block' I can stop talk to someone (short conversations and much hand waving as my Spanish is pretty dismal)then carry on walking.If I didnt have a bad heart Id be jumping for joy but have it on very good medical advice that is probablly not the best thing to do right now.
I hope this is a bit of a breakthrough and would love to know If anyone out there has had heart surgery or is on beta blockers and if so was there an improvement

Keep Smiling
Mike
patty
Posts: 43
Joined: Tue Apr 26, 2005 3:11 pm
Location: North Warwickshire UK

Re: How is everyone?

Post by patty »

Hi Mike, I was just thinking of sending an email to ask if anyone had heard from you and here you are large as life and still sounding very positive, you are an inspiration to us all, I do hope the standing keeps improving after the op it would make it so worth while don't you think? When are you going to have the surgery, do you know yet, it seems to be taking a long time from when you were first admitted, but maybe that's just the Spanish way.

Keep well Mike and keep in touch, my very best wishes, Patty
Lorie M
Posts: 50
Joined: Sun Dec 18, 2005 12:40 pm
Location: MN

Re: How is everyone?

Post by Lorie M »

Mike,
Does this mean we should all have a heart attack? Morbid sense of humor I have! I have forwarded your comments to Dr Matsumoto at Mayo. I have had no reply but thought maybe it might be interesting to him. I am hoping your surgery goes well.
Lorie M
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

Hi Mike,

I haven't been checking the forum as often as I should and just heard of your heart attack and hospitalization. Sorry to hear about the attack, but happy to hear you seem to be doing pretty well ~ keep that positive attitude and sense of humor.

You mentioned your ability to stand for longer periods of time and think it may be because of the beta blocker you are taking. Are you taking Inderal; or do you know? Whatever....it seems to be working for you and that's wonderful.

I was on Inderal for years for hight blood pressure, but no longer have the blood pressure problem and am no longer taking Inderal. It did nothing for my tremors and made my blood pressure too low. I do know of others taking this and they find some relief; I hope that will continue to be same for you.

Please keep all of us informed as to when your surgery is scheduled; and afterwards, when you can ~ let us know of your progress. We are all interested and wish only the best for you.

Good luck!

Betty
MikeS
Posts: 110
Joined: Wed Mar 19, 2008 2:51 pm
Location: Marbella Spain

Re: How is everyone?

Post by MikeS »

Hi Everone
Just an update I have seen a nurologist here who was asked by my Surgeon to check whether my OT could cause any complications during my surgery.This was of course a complete farce as he didnt speak any English and my Spanish is not good so we did everything through the translator ,who was German....any way turns out the babys due October.....sorry I digress the neuroligist had not seen OT before and was not intrested in discussing the fact that I could stand without shaking did not even want to talk about it and said that it can be talked about after op and then I should go and see my own neuroligist.I have done a short video and sent it to Dr Torres-Russotto along with a list of the medicaton Im on at moment its on youtube and just type in MSWL ....which is short fo Mike Senker Wobbly Legs.....and see for your self .I really hope theres something in this medicaton I am taking that will help . On Wednesday Im having a triple bypass op so I will be out of contact for a while but when Im up and about again I will follow up on the meds I was on and see if there is any difference post op.
Keep Smiling
Mike
:)
Last edited by MikeS on Mon Aug 31, 2009 3:18 pm, edited 3 times in total.
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Hi! Mike: What an impressive video to see you standing, amazing! I hope Dr.Russotto will find a clue from all of this. Inspite of the fact that you are undergoing a triple bypass on Wednesday you looked as well on youtube as I remember you at our OT meeting in Rochester. I'm still laughing at your neurologist experience, unfortunately this is still going on worldwide. There is a BIG hole in neurological education. Take care and know you will feel great after surgery, Gloria
jolarson
Posts: 77
Joined: Fri May 02, 2008 5:49 pm
Location: orange county, ca. usa

Re: How is everyone?

Post by jolarson »

Mike - Impressive video and wonderful to see you free standing without the tremors in such a relaxed way. Amazing and I hope the doctor will be able to shed some light on why this is happening since you sent the video to him. Sorry about the heart condition and from relatives who have had by passes, they are doing very well now. Also, I love your humor and laughed out loud when you wrote "the baby is due in October"!!!! My thoughts are with you...................................
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

Okay! Tell me what I am missing!!!

I tried to access Mike's video using MSWL as he suggested and I could find NOTHING! I was VERY disappointed.

Will someone PLEASE tell me what I must do to see Mike? If you, Gloria or you, Jolarson could send me the link, I would really appreciate it.

Also, Mike, so good to hear you are still making everyone smile; and I hope Dr. Russotto will be able to see something in your video which will be helpful to him and to you. We never know what will be the AH HA moment!

Betty
jolarson
Posts: 77
Joined: Fri May 02, 2008 5:49 pm
Location: orange county, ca. usa

Re: How is everyone?

Post by jolarson »

Betty - The way I found it was at youtube.com. Then in the search engine there I typed in MSWL and there it is. Hope this works since I can't seem to provide a link. It is so fun to actually watch and hear him. He's so delightful. Good luck.
MikeS
Posts: 110
Joined: Wed Mar 19, 2008 2:51 pm
Location: Marbella Spain

Re: How is everyone?

Post by MikeS »

Hi Betty here is the link....I dont think it will get any awards but all my fellow OT sufferers will appreciate how good it feels to stand for that amount of time


http://www.youtube.com/watch?v=52286KHsYv0

Mike
Chris
Posts: 91
Joined: Sun Dec 26, 2004 2:28 pm
Location: Okanagan Valley, British Columbia, Canada

Re: How is everyone?

Post by Chris »

Hi Mike
Wow....that was truly amazing to see you standing so long. I really hope for the sake of all of us that you are on to something wonderful. Hope everything goes well for your surgery.....I will be thinking of you. I really wish I could have made the gathering last year so I could have met you.
Stay in touch and keep smiling.
Chris :)
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