Search found 90 matches

by Marianne
Sun Nov 17, 2019 1:26 pm
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: How is everyone?
Replies: 719
Views: 98031

Re: How is everyone?

Hello Mike: I hope your success with the Oxygen therapy continues. I look forward to seeing your post with all particulars of your therapy ( liters per minute, how long you use the Oxygen before you gain time with no tremors) and anything else that would help me convince my neurologist to prescribe ...
by Marianne
Sun Nov 10, 2019 12:28 pm
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: How is everyone?
Replies: 719
Views: 98031

Re: How is everyone?

Look forward to hearing promising news from you!!
by Marianne
Thu Jan 17, 2019 1:25 pm
Forum: Research Papers
Topic: Complete Resolution of Symptoms of Primary Orthostatic Tremor with Perampanel
Replies: 13
Views: 10015

Re: Complete Resolution of Symptoms of Primary Orthostatic Tremor with Perampanel

Does anyone have any reaction or thoughts from Dr Torres-Russotto on the successes being realized by a number of OT’ers who are currently taking Fycompa?I would be interested in knowing his thoughts on this subject. Look forward to replies. Thanks !!
by Marianne
Sat Dec 22, 2018 11:01 am
Forum: Research Papers
Topic: Complete Resolution of Symptoms of Primary Orthostatic Tremor with Perampanel
Replies: 13
Views: 10015

Re: Complete Resolution of Symptoms of Primary Orthostatic Tremor with Perampanel

Good morning Gloria, Can you please give me the name of the Facebook page that has been started re the members who are presently taking the fycompa? Wishing you well
Marianne
by Marianne
Sat Dec 22, 2018 10:57 am
Forum: Research Papers
Topic: Complete Resolution of Symptoms of Primary Orthostatic Tremor with Perampanel
Replies: 13
Views: 10015

Re: Complete Resolution of Symptoms of Primary Orthostatic Tremor with Perampanel

Good morning Jane. I was very interested to learn of your success with the fycompa med. We’re you taking any other med prior to taking the fycompa?? I’m presently being weaned off Clonazepam which no longer helps. Good luck to you!
Marianne
by Marianne
Thu Aug 09, 2018 4:00 pm
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: New to the forum? post a quick introduction
Replies: 1000
Views: 127359

Re: New to the forum? post a quick introduction

Welcome to our group. I am baby boomer who was diagnosed almost 22 yrs ago not too long after completing my RN. I worked in the profession for a short time but after a brief period of time found I could not continue. I’ve been retired 20 years and my OT has progressed since my initial diagnosis. I t...
by Marianne
Sat Jul 14, 2018 12:30 pm
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: New to the forum? post a quick introduction
Replies: 1000
Views: 127359

Re: New to the forum? post a quick introduction

Just a re-introduction. My name is Marianne and was diagnosed with ET in 1996. I had to prematurely retire from my job and now am comfortably a “baby boomer” retiree. I’ve never had an opportunity to attend any of your meetings in Nebraska but always follow up on what went on. After having 2 knee re...
by Marianne
Sun May 20, 2018 7:58 pm
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: New to the forum? post a quick introduction
Replies: 1000
Views: 127359

Re: New to the forum? post a quick introduction

Carol, I was diagnosed back in 1995 and it took a few doc visits before I got a diagnosis. I was going to neurologists who looked at me like I had 4 heads. Then finally I lucked out and found a neurologist who knew exactly what I was talking about. But that was many years ago and I would think that ...
by Marianne
Fri May 18, 2018 2:12 pm
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: New to the forum? post a quick introduction
Replies: 1000
Views: 127359

Re: New to the forum? post a quick introduction

try finding a neurologist that specializes in movement disorders. Wish you well!
by Marianne
Thu Mar 22, 2018 2:32 pm
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: New to the forum? post a quick introduction
Replies: 1000
Views: 127359

Re: New to the forum? post a quick introduction

Nice to hear from you Julia. I hope your debilitating disability doesn’t prevent you from doing the things you want to do. After many years of shying away from electric scooters I decided that if I wanted to travel and move around like others, the scooter was my only answer. And yes, I agree, most o...
by Marianne
Wed Mar 21, 2018 9:07 pm
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: New to the forum? post a quick introduction
Replies: 1000
Views: 127359

Re: New to the forum? post a quick introduction

Hello and welcome, I was diagnosed with OT in 1996. In the beginning shifting was a mechanism I used in order to extend my stand time. The progression of OT is different for all of us. I have good days and bad days and take 8mg of Clonzepam daily. Several years ago when I realized I could not do sup...
by Marianne
Sun Feb 18, 2018 9:06 am
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: New to the forum? post a quick introduction
Replies: 1000
Views: 127359

Re: New to the forum? post a quick introduction

Good morning, Having been diagnosed with OT in 1996, and having had two knee replacements (last one in Oct 2017), I can tell you that OT can mess with many other parts of the body. Because most of us struggle when we stand up without walking our legs , backs, etc take the abuse. Our spines can becom...
by Marianne
Mon Feb 05, 2018 5:30 pm
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: New to the forum? post a quick introduction
Replies: 1000
Views: 127359

Re: New to the forum? post a quick introduction

Hello Lynette I read your post and I really did not have much of a problem vis a vis my OT and knee replacement. I had my surgery on 10/3 and PT until the end of December. The stiffness in my knee has dissipated and my knee feels almost normal. However, I can only walk a very short distance before i...
by Marianne
Sun Feb 04, 2018 8:07 pm
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: New to the forum? post a quick introduction
Replies: 1000
Views: 127359

Re: New to the forum? post a quick introduction

Good evening Gloria just wanted to say that not all of us are diagnosed by EMG. I was diagnosed by a movements specialist almost 23 years ago who is a clinician and a researcher. He was able to diagnose me by observation. I too have noticed my standing time has deteriorated. Although I have some “go...
by Marianne
Fri Dec 08, 2017 10:22 am
Forum: OT- "THINGS" that help
Topic: Recumbent bikes
Replies: 1
Views: 791

Re: Recumbent bikes

Hello Gloria, I too have a recumbent bike which I feel helps exercise my legs. However I had right total knee replacement 2 months ago and my tremor does interfere with some of my physical therapy exercises. Currently taking 6 mg of Clonazepam which just takes the edge off my tremor. Can’t stand in ...

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