Orthostatic Tremor Clinical Rating Scale - Dr Bain

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admin
Site Admin
Posts: 544
Joined: Fri Jan 16, 2004 5:25 pm

Orthostatic Tremor Clinical Rating Scale - Dr Bain

Post by admin »

In what ways can you tell if your OT has gotten better or worse? what are the symptoms, or features that define the severity of OT?

The following is a letter from Dr Bain (Department of Neurology,Charing Cross Hospital) about an exciting new project that will help in assessing the severity of OT. He has asked that you send him your information directly to the email address posted below. He will not be able to communicate with you about your OT, so it is important that you clearly list the areas or topics that you feel would be appropriate for rating Orthostatic Tremor.

He has given examples below such as "Your legs get cramp when standing". Symptoms such as this would yield information that could be placed within a scale that would indicate when OT has improved or become worse.

I hope that you will take advantage of this unique opportunity to become involved in this project.

A Clinical Rating Scale if used over time with a patient would show if there is an improvement or decline in OT symptoms. Dr Bain is looking for suggestions of the ways in which you can determine improvement or worsening of OT. When submitting your information to Dr. Bain consider what those "things" would be.

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Creating an Orthostatic Tremor Clinical Rating Scale

Objective:
I am currently trying to construct a scale for assessing the SEVERITY of orthostatic tremor (OT) and its EFFECTS on patients with OT. Consequently, I would greatly appreciate help from people who suffer from OT.

Rationale:
The reasons for constructing a clinical rating scale for OT are that the scale could be used to:
1.Document the severity of OT and its effect on the person with OT at clinic appointments, so that the doctor and patient with OT can be confident that a specific treatment is helping.
2.Measure the severity of OT and its effects on the patient, so that new medicines can be tested for OT and the effects measured and ideally compared with other medicines.
Assess the natural evolution of OT in each patient.

Can you help?
If from your experience with orthostatic tremor you have noticed ways in which you can tell it has got worse or better, even temporarily, please would you email or send a letter to Dr Peter Bain explaining what you have noticed. This information would be invaluable for constructing an OT Clinical Rating Scale which we would then test for reliability and validity.

Examples:
For example, you may have noticed that:
1.You cannot stand still for so long when your OT is severe.
2.Your legs get cramp when standing.
3.Your hands might shake as well.

PLEASE send in your suggestions as every piece of information is in valuable for creating an OT clinical Rating Scale.
Please write to or Email Dr Peter Bain at:

Dr Peter Bain
Department of Neurology
Charing Cross Hospital
London W6 8RF

Email: p.bain@imperial.ac.uk

Thank you for your help with this project.

Yours faithfully

Dr Peter Bain MA MD FRCP
Consultant Neurologist
To help understand the type of suggestions that Dr Bain is looking for, it may be easiest to finish the following sentence.

When my OT is very severe (or improved) .........

examples:
1.You cannot stand still for so long when your OT is severe.
2.Your legs get cramp when standing.
3.Your hands might shake as well.
4.......
pbetti
Posts: 6
Joined: Mon May 06, 2013 7:00 pm
Location: pinole ca

Re: Orthostatic Tremor Clinical Rating Scale

Post by pbetti »

I was diagnosed 5/3/13. My Neurolosigt hit it right on the nail. Said I had OT and I was the 1st patient he ever had with this problem. Prescribed Clonazepam 0.5Mg. Take one pill a day or 2 as needed. For about 3-4 days it seemed to make my leg tremor better. I could stand still longer. Now it is not working so well and I am back to the shaky legs within seconds of standing still. I plan to up it to 2 pills after May 24, I have a Hysteroscopy surgery that day and I think I should not start the 2 pills till after that. I have had OT for years (6-8), March and April 2013 I started bleeding and the stress and anxiety that gave me has made the OT very much worse. I am positive of that. I never knew why I had problems standing still, in church, in bank lines, in grocery store lines etc. I always looked for a wall to lean against or somewhere to sit. When walking I feel fine. When I stand still and the legs start to tremor my toes curl trying to get a grip, and then the core of my body starts to shake and then my arms and hands. If I have to sign a charge card reciept my hand writing is terrible shaky and un readable. If I sit down this all gets better. I've been functioning in the world without help be now I need help to stand and cook, and to be in a line (cane/seat) I hope this is some help for your rating scale . I am 64yrs, female, live in Pinole Ca. I would be very interested in taking part in an OT study. Phyllis Betti
admin
Site Admin
Posts: 544
Joined: Fri Jan 16, 2004 5:25 pm

Re: Orthostatic Tremor Clinical Rating Scale

Post by admin »

Hi Phyllis

Thank you for writing about your experiences.

Dr Bain has asked that everyone send their suggestions for the OT assessment scale to him in an email:

Email to: p.bain@imperial.ac.uk

He apologizes that he will not be able to respond individually, and thanks everyone in advance for their emails.

If it's possible to list the specific OT "features" that could be used in a rating scale that would be very helpful. For example, Phyllis, you might want to include the following in your email to Dr Bain:
  • 1. When I stand still and the legs start to tremor my toes curl trying to get a grip

    2. the core of my body starts to shake

    3. and then my arms and hands

    4. If I have to sign a charge card receipt my hand writing is terrible shaky and unreadable.

Also - if anyone would like to post their list here as well as send it on to Dr. Bain, that may encourage additional discussion on the ideas, or trigger other thoughts that may be useful for Dr. Bain.

If we can borrow the phrase from NORD, I think this is a perfect saying:

Alone we are rare. Together we are strong.
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: Orthostatic Tremor Clinical Rating Scale

Post by gloria »

All OT friends:

Dr. Bain’s Clinical Rating Scale and it’s construction is a great opportunity for ALL of us to help by participating. We are the only source of this information because we are living with OT. We live a highly challenged life and needs to be recorded by everyone of us. It will give validation to our daily OT lives and Science a better chance to recognize us.

Please send  your list of suggestions for the OT rating scale by email to Dr. Bain ,   Gloria     
Lake of the Woods
Posts: 263
Joined: Fri Dec 29, 2006 12:10 pm
Location: Kenora, Ontario, Canada

Re: Orthostatic Tremor Clinical Rating Scale

Post by Lake of the Woods »

Hello everyone,
I will admit that I did find Dr. Bain's request kind of vague but I did feel it was important to reply as he is an important doctor who has knowledge of OT. This is how I handled my reply:
I gave some brief background info on myself including age, length of time I have had OT and advised that I had tried some medications for it initially but have chosen not to take any meds. I felt that this info was relevant to how I was doing with OT.

I also told him about how OT affects me in certain situations - difficult and otherwise for mobility.
I advised that I have only had arm tremors once when I leaned against the wall in the gym with my arms to stretch out my calves.
I do experience freezing if I am forced to lean on something for longer than I would like.

I had forwarded Jeff's email from Dr. Bain to all my contacts from both the first meeting we had in Omaha and people on the second list who wish to partake in the second session in Omaha. I just received an email from a retired doctor with OT who wishes to come to the second session; she sent me a copy of her reply to Dr. Bain and it pretty well followed the same format that I had sent.

Hopefully, others will reply to his request. He did reply briefly to me and advised me to keep an eye on the National Tremor Foundation for results of this but also advised it will take time to get this scale completed.

Peggy
Cantstandalone
Posts: 1
Joined: Sun Mar 10, 2013 8:13 pm
Location: Truro, Nova Scotia, Canada

Re: Orthostatic Tremor Clinical Rating Scale

Post by Cantstandalone »

Hi all, I just turned 40 years old and have had OT for the last 4 years although I believe it had all started as a result of jaw surgery I had 13 years ago. I remember leaving the hospital after surgery with an immediate intolerance to standing, which I had never had before the surgery. Anestetic perhaps? It affects your nervous sytem, shuts it down almost actually..just a thought.... This intolerance prompted me to quickly find a new job where I no longer had to stand. I didn't realize it at the time, chalked it up to fatigue, but this was very slowly building up to the life as I now know it "living with OT" and I had my first leg tremor in 2009.

1. If I stand without support for more than 30 seconds my toes start to grip the floor, my legs tremble more and I can feel this trembling moving up into my torso. There's a panic to find a chair or something to lean on and I start to feel anxious because I feel like I could fall.

2. If I am in a store isle and someone is in close proximity, behind me or within an arms length away, I feel even more anxious because I am worried that I may fall on them or that they may bump into me causing me to lose my balance (sounds strange but because I am so unsteady, it wouldn't take much for me to fall over or lose my balance at this point)

3. If I lean in something and use my arms to support my body weight, my arms will shake the same as my legs do.

4. My legs (mosly calves) get rigid and hurt, feel cramped if I am forced to stand unsupported for any length of time. They also get sore if I walk for more than a short period of time.

5. The more anxious, excited I am, the worse my tremors are. Emotions are definitely a trigger, whether happy excited or anxious excited, it doesn't matter.

6. I perspire easily while having a tremor, my body gets overheated quickly and I feel very agitated. I almost feel like I have too much adrenaline going through my body but there's no way to calm it down except to sit.

7. Any kind of workout, walking, ect., only makes the tremor worse, makes my legs cramp up and ache even more so I have found that the more I rest, the better my temors are.

Sorry so long, just my two cents worth,

Thanks for listening,

Leanne
lla
Posts: 19
Joined: Sun Jun 09, 2013 1:59 pm
Location: Clinton, Missouri

Re: Orthostatic Tremor Clinical Rating Scale

Post by lla »

Hello to everyone,

When I read the post from Leanne, I felt she had written my story. I Identify with almost everything she has written. There are just two things I do not experience. Walking does not make my legs sore and I can exercise as long as I can have support for the standing exercises. Only one time have I had my leg lock up on me. This was only when I had walked a long distance on a steep incline.

When I first wrote my introduction this year, I thought I was improving a little bit. My standing seemed to be better. Since that time, I have been trying to stand for longer periods of time (still less than one minute). Now I find, when I try to move, I freeze in place and have great difficulty moving. When I get started, I am experiencing gait problems.

My anxiety level is getting worse. Handling any kind of a social situation is extremely difficult. I feel the anxiety is turning into fear.

Linda
babyboomer54
Posts: 7
Joined: Mon Apr 28, 2014 5:54 am
Location: Sandstone Point Qld Australia

Re: Orthostatic Tremor Clinical Rating Scale - Dr Bain

Post by babyboomer54 »

Hi Leanne, You have described exactly how l feel. I remember the first time I felt the tremor it was at a funeral for a very good friend. As I set off to go up the steps to the church my legs seemed to give way. Then as I waited for the bus on a morning I found it difficult to stand still. My job was a clerical role so working I was fine but if I had to stand for training that was more difficult. Now l am finding people are noticing and sometimes stare, making me more aware and in turn I shake more. I used to love shopping in the city but now it has become an ordeal, and when I get home I am exhausted.Medication made me a walking zombie so I have decided not to go there yet. Stress makes them worse. Sometimes people get offended when you are in their way especially if you reach out to hold onto something. I feel I have aged 20 years in the last 2 years. I am 60 and wonder how I will be at 70.
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