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Hi, my name is judithamery!

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judithamery
judithamery Community member Posts: 4 Listener
I’ve just got home from seeing a neurologist and have been diagnosed with Orthostatic tremor. I am partly relieved as I have been afraid to go out for some time, can not do things like standing in queues or looking at things in shops and partially scared due to the lack of information. I am also unable to find much other than using walking aids by way of managing the problem. 

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  • Sandy_123
    Sandy_123 Scope Member Posts: 52,743 Disability Gamechanger
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    Hi @judithamery welcome to the forum, it's good to get a diagnosis then you can plan ahead moving farward and understand your symptoms better, also treatments. 
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    Hello @judithamery and welcome, thanks for reaching out, it can be a bit scary getting used to life with a new diagnosis. I hope the community can help support you, as I'm sure plenty of our members have been through similar. 

    What things are you finding most challenging? Perhaps we can help :)  
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  • chiarieds
    chiarieds Community member Posts: 16,133 Disability Gamechanger
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    Hi @judithamery - & welcome to the community from me also. Have you come across the National Tremor Foundation? They have some info about orthostatic tremor on their website: https://tremor.org.uk/orthostatic-tremor    They also have a few local support groups & online support groups too.
    Perhaps something simple such as a stick that converts into a seat might be worth looking at for when out shopping/queuing etc: https://www.completecareshop.co.uk/mobility-aids/walking-sticks/walking-stick-seats



  • judithamery
    judithamery Community member Posts: 4 Listener
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    Thanks very much for the replies and the links to web sites - I will have a read! I find shopping particularly difficult, things like not being able to choose a card because it requires time to browse. Also queuing to get into venues etc. I have also stopped going for walks in my village in case I bump into people who want to stand and chat! Im sure I will find ways to overcome things. My husband and two sons are very supportive but have always maintained it is anxiety! I used to drink quite heavily so I thought it was drink causing it, but I’ve not had alcohol for 18 months and it’s actually worse!! Thanks again for the communication! 
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,983 Disability Gamechanger
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    Is there anything which would make going out more manageable for you at the moment @judithamery? It is positive to hear you have support from your husband and two sons. I can hear this still causes some difficult feelings though, like anxiety  :(
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    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • judithamery
    judithamery Community member Posts: 4 Listener
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    I have been to a football match today to see The Lionesses,  I used my stick for the first time which was quite a shock for my grandchildren. However I felt a bit safer and I used the disabled loo which avoided standing in a massive queue! That really helped! 
  • judithamery
    judithamery Community member Posts: 4 Listener
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    I’m trying to get in touch with anyone else who has orthostatic tremor. I have looked at a couple of websites but it seems there is very little information out there. 
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