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I have hemi-dystonia on left side; if it were right-sided, I

I have hemi-dystonia on left...
I have hemi-dystonia on left side; if it were right-sided, I doubt I would be driving! Would appreciate e-mail contact with a dystonia sufferer; not facebook or twitter, as I believe these are the devil's playground.
Many thanks.
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Answered in 1 hour by:
7/21/2012
Nurse Susan
Nurse Susan, Nurse (RN)
Category: Health
Satisfied Customers: 1,091
Experience: RN, BSN, MSN-ED, Nurse Educator whose passion is helping people understand their health and wellness
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HelloCustomer

I can empathize with you on having a movement disorder, I myself have mild cerebral palsy of the ataxic type. And it can be hard when ones body does not quite obey the commands of the brain. Having said that, there are no email lists of individuals that I could find, but there are support groups for people with dystonia. I do not know where you are, so here are two web pages for you to locate support groups that may be close and convenient to where you are.

Support groups can offer face to face interaction that can be better for some people than email. They can see others with a similar condition and know truly that they are not alone.

Here are the web pages:
The Dystonia Foundation: http://www.dystonia-foundation.org/pages/find_a_support_group/233.php

From John Hopkins Medical Center: http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/movement_disorders/support_groups/

The Dystonia Coalition: http://rarediseasesnetwork.epi.usf.edu/dystonia/patients/getinvolved/advocacy.htm

This is a dystonia message board which may suit your needs. http://www.dailystrength.org/c/Dystonia/support-group

I hope I was able to help you,
Sincerely,
Susan
Nurse Susan
Nurse Susan, Nurse (RN)
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Customer reply replied 5 years ago
Susan, sorry to hear of your ataxic cerebral palsy. What adjustments do you make to your work and home life? Are those around you sympathetic? My aunt had epilepsy, as dystonia is known to be genetic - is cerebral palsy? Who else do you know with the ataxic variety?

I live in Canberra (cold), the nation's capital A.C.T. for a support group if you can source any please. Sydney would also be helpful, as we are a 3.5 to *****therefrom. Have you visited Australia?

You must love nursing. I always wanted to be one but could not cope with standing all day, injections or patients being ill at either end! It is sadly such a dangerous profession with security guards inside the door for inappropriate behaviour, language, etc. Most nurses need security to take them safely to car, sometimes waiting 1 hour or so. My niece works at John Flynn Hospital on the Gold Coast and has to endure two-legged rodents with attitude.

Warm wishes,
Lornie Dyke

Warm wishes,
Lornie Dyke
HiCustomer

Thank you so much for the Accept. Luckily for me, my cerebral palsy is quite mild. Many cases are not; those can be profoundly severe in their effects both physically and mentally. So, mine manifests mainly as a lack of fine motor coordination and a mild tremor. I am quite the klutz. I drop things and spill things, my table manners are not fit to meet the Queen of England. So, I can not work in all areas of nursing; fields that require high levels of speed and dexterity are not suited for me.

Nursing is not so dangerous as you seem to believe. The only time I saw guards everywhere was when I worked at a prison...and at some schools for troubled children. But hospitals are, by and large, not dangerous places, and neither are most school. Yes, though, some patients can be VERY difficult, I agree with your niece.

Ive done school nursing, home care nursing, some correctional health care nursing but ran into that speed and dexterity issue again....now I have my masters of science of nursing in nursing education and hope to teach. But I got sidelined by some health issues, so thats on hold....but I love working on this site.

Some Australian based support group web links:

http://www.medtronicneuro.com.au/movement_disorder_links.html

http://brainfoundation.org.au/a-z-of-disorders/89-dystonia The list of groups is at the end of the page.

http://www.mdvu.org/ASO/default.asp?dis=2

Hope that helps, and feel free to keep in touch.
Sincerely,
Susan

Nurse Susan
Nurse Susan, Nurse (RN)
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Satisfied Customers: 1,091
Experience: RN, BSN, MSN-ED, Nurse Educator whose passion is helping people understand their health and wellness
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Nurse Susan
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Category: Health
Satisfied Customers: 1,091
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