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.

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stella R
Posts: 103
Joined: Thu Jan 17, 2008 2:51 am
Location: winnipeg, manitoba, canada
Contact:

Re: How is everyone?

Post by stella R »

Hi Betty,
Aww that is not good to hear.
Why were you regected.
Can you not still come?
I havent heard back from them yet.
I was so looking forward to meeting you.
Hope you can still come.
Stella
Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

Hi Stella,

I was REJECTED because I have vertigo! :o I was told they were testing for OT and because I have vertigo, I wasn't acceptable! :?

I told the doctor, he would have a very rare opportunity to see someone with both OT and vertigo, and one who could distinguish the difference between the two; but they didn't want me.

I have already cancelled our hotel reservations and doubt we could get a reasonable flight at this point. Also, our calendar is filling up at this point.

I will miss meeting you and will also miss getting to see all those whom I have met. Perhaps we will have another meeting, and I/we will be able to attend. I will be eager to hear all about the event.

Betty
stella R
Posts: 103
Joined: Thu Jan 17, 2008 2:51 am
Location: winnipeg, manitoba, canada
Contact:

Re: How is everyone?

Post by stella R »

HI Betty,
Well i agree it might have been benifical to the trials to have
a person tested who has another condition along with OT.
However i guess nothing we can do about it .
We shall keep in touch.
Stella
MaureenB
Posts: 59
Joined: Mon Mar 22, 2010 4:24 am
Location: Southport UK

Re: How is everyone?

Post by MaureenB »

:) Hi Mike

sorry to read you are having a rough time, trust your treatment was carried out yesterday and that all went well
Thanks for your support when i was feeling very gray the other month.

Keep smiling as usuall
regards Maureen.
Lorie M
Posts: 50
Joined: Sun Dec 18, 2005 12:40 pm
Location: MN

Re: How is everyone?

Post by Lorie M »

I also have been rejected by the Omaha research team due to vertigo.
I did find out from Dr Matsumoto at Mayo, that the essential tremor I have is a part of OT.
Lorie M
Posts: 50
Joined: Sun Dec 18, 2005 12:40 pm
Location: MN

Re: How is everyone?

Post by Lorie M »

Hello to everyone but especially to Mike.

Recently I have had a dry cough for about 5 months. My doctor said it was caused by my blood pressure pill. (Benazepril or Lotensin) I had been taking it for many years. The doctor said it happens sometimes even after many years. As some of you people with OT have noticed and have commented that I never looked like I had OT since I could stand longer than others.
WELL about 3 days after going off the BP medicine my tremors became very noticeable to everyone. Evidently due to stopping the Benazepril. I have been off the
BP pill for 3 weeks now and just started a new one(Losartan) yesterday. Continue to shake!
I thought of you Mike when you were on drugs for your heart before your surgery and the tremors became less and started after your heart surgery.
Benazepril (Lotensin) is an ACE inhibitor. Did they ever decide what medication you received that you had that helped to eliminate tremors?

If I take the drug Ativan it does help the "shakes". At least I can get my gin and tonic up to my mouth easier.

I hope everyone has a Merry Christmas.
Lorie M
Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

Hi Lorie,

I think we will all be interested to hear how your new medication works for you and if it affects your tremors at all. I have yet to find a medication to help with my tremors, but I continue to try.

I do remember Mike, when you wrote of your experience while in the hospital for your surgery; also saw you on You Tube. I hope things are going better for you, let us know.

Lorie, do keep us informed.

Merry Christmas and Happy New Year to all....

Betty
owen-lynettepickles
Posts: 54
Joined: Sat Jun 06, 2009 4:26 am
Location: Blenheim, New Zealand

Re: How is everyone?

Post by owen-lynettepickles »

Hello Lorie
I'll be interested to know how you get on with Losarten and your dry cough. I was on Losarten for high blood pressure for abut three years but had to go off it because of the dry cough I had. I also had to stop taking Inhibace for the same reason. I now take Bendrofluazide. Was interesting to read how your shakes were much worse once you were off the BP medication. Please keep us posted on the Losarten.
Regards, Lynette
Lorie M
Posts: 50
Joined: Sun Dec 18, 2005 12:40 pm
Location: MN

Re: How is everyone?

Post by Lorie M »

Hello everyone! Mike, I hope you are getting better.

As for the cough I have had (doctor thought it was from Benazepril HCL) I went off the BP pill and after 3 days tremors became very noticeable to everyone. I started taking Lorsartan for BP.The cough did not disappear, I finally went to my allergist and he thought the cough was from sinisitis.
He started treating me for that so I went back to an internist ( associated with my family doctor) and asked about going back on Benazepril. I stood all the while I was waiting for him to enter the room. Wobbling all over! He was surprised and said what is that all about? I told him OT and he asked me how long I had that. I had seen this doctor many times but was always sitting when he examined me. He was very surprised that I had OT since the 90's. He said to go back on the Ace inhibitor and see my regular doctor as scheduled previously. Tremors were lessened with the return of benaqzepril. So, I did the same thing with the doctor I had seen for years. I stopped the benazepriI for 3 days before the doctors visit. I stood all the time while waiting for him. He had a student with him so they both got a lesson. Maybe we should all stand until the doctor comes into the room so they can understand what OT is all about. ( I did cheat a little by leaning against the wall a few times)
So he said to stay on the benazepril and try to cut it in half if the cough does not disappear.The cough is getting better. Wouldn't it be great if someone figured out that an ace inhibitor would be able to treat OT as well as BP? I did email Dr Matsumoto at Mayo so maybe he can follow up on it. I wonder if Mike took something like an ace inhibitor before his heart surgery!!
Lorie M
cinsim1@yahoo.com
Posts: 22
Joined: Tue Jun 12, 2012 10:27 pm
Location: Carlsbad, CA
Contact:

Re: How is everyone?

Post by cinsim1@yahoo.com »

Hi everyone,
I haven't posted in quite a while, but love reading everyone's posts. A couple of weeks ago, my doctor's PA wanted me to start physical therapy for my balance. So off I went to see if it would help. My PT has never worked with an orthostatic tremor patient and knew little of its symptoms. After running me through various tests, she has me standing in a corner w/ my legs tightly together and my arms crossed. I count to 30 with my eyes open and then closed for another 30 counts. I also have to move my head back and forth 10 times and up and down 10 times (eyes opened, then closed). This becomes very hard to do after counting to 20 and almost impossible when my eyes are closed. My legs turn into concrete, toes curl, and the great need to grab on to something for support or walk awhile makes it unbearable (three times a day, I'm doing this).
Anyone else doing physical therapy and does it help you??
Any advise or opinions out there?
Cindy Simpson
Carlsbad, CA
podhorodeckisz
Posts: 15
Joined: Thu Sep 09, 2010 9:40 am
Location: Sandbach, UK

Re: How is everyone?

Post by podhorodeckisz »

Hi Cindy.
Physical therapy for OTers - complete waste of time! I've been sent to physio probably about 20 times in my lifetime. I'm asked to do a particular exercise and after a few seconds start shaking. "That's your muscles working.." they say. GRR.. :x
Regards, Stash
Lorie M
Posts: 50
Joined: Sun Dec 18, 2005 12:40 pm
Location: MN

Re: How is everyone?

Post by Lorie M »

About the only exercise I can do is biking since I sit down. Did not do much of that last summer either since my husband had a hip replacement. Poor excuse eh? The trail is about a block from our house and I COULD bike without him for awhile. When the winter melts off we will try again. Never had therapy for OT. I did have some exercises for my "core" muscles a few years ago to make them stronger. Good idea but lost interest. Standing with legs straight for any length of time does not do anything for me but make me wobble. Keeping my knees tight lets me stand for a few moments longer, however!
Di Di
Posts: 149
Joined: Tue Jan 24, 2012 5:03 am
Location: Wellington, New Zealand

Re: How is everyone?

Post by Di Di »

Hi all .....reading all your comments and adventures with physical therapy , would any of you consider doing those exercises in a swimming pool ,including biking [a long foam noodle between legs where the seat would be !!] peddle ,move your arms like you are dog paddling ....
wading ,stretching all can be done ,once you get use to the fact there is no pressure of weight on your legs ...thus little if any sensation of OT

I have been on about this since I found the forum ....would LOVE someone else to try it
a hydrotherapy hot pool is best ...but any warm public swimming pool would do...
you just need the courage to put on a swim suit and try !! :)

personally I have been going to the pool at least four mornings a week for the past 3 years WORKS FOR ME ....Didi NZ
cinsim1@yahoo.com
Posts: 22
Joined: Tue Jun 12, 2012 10:27 pm
Location: Carlsbad, CA
Contact:

Re: How is everyone?

Post by cinsim1@yahoo.com »

I'd be willing to try the swimming exercises if only I could talk my husband into buying me a pool and having the courage to put on a swimsuit! LOL
Di Di
Posts: 149
Joined: Tue Jan 24, 2012 5:03 am
Location: Wellington, New Zealand

Re: How is everyone?

Post by Di Di »

yer...I know it takes a bit to put on a swim suit !! ...but I soon realized no body takes any notice ,they are too busy getting on with their own thing ...
Are there public in-door swimming pools , with adult times in your home towns ?...thats the place to give the pool excersises a go .....there are rails and bars to help you to get in and out ...

like most OTers I find floor excersises and long walks knocks me out ,energy wise for the rest of the day ....not so the pool work outs .....lecture over ....subject closed from me :)
Didi NZ
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