Dystonia Association, Support, & Information - Alberta , CA

10/09/2025

La dystonie est un trouble du mouvement neurologique caractérisé par des contractions musculaires involontaires qui provoquent des mouvements répétitifs ou des postures anormales. Ces contractions peuvent affecter un seul muscle, un groupe de muscles ou tout le corps, et elles entraînent souvent des torsions, des tremblements ou des positions anormales soutenues.

dystoniacanada.org

09/09/2025

We are excited to announce that the Cape Breton Regional Municipality will once again be proclaiming September as Dystonia Awareness Month with a Flag Raising Ceremony.

The event will take place on Tuesday, September 16th at 1:30pm at the City Hall.

Our sincerest gratitude and appreciation for all involved in this event as they took it upon themselves to support us while I have been in Halifax undergoing surgery and now am in recovery mode for spine surgery.

On behalf of patients everywhere, I thank you.

Please stop by and show your support or just say hello.

Dystonia Medical Research Foundation Canada
Dystonia Association, Support, & Information - Alberta , CA
Dystonia Europe
Dystonia Ireland
Dystonia Medical Research Foundation
Australian Dystonia Support Group
Dystonia UK

09/09/2025

07/09/2025

We are excited to announce Dystonia Europe’s first art competition! This competition is open to all children under the age of 18 years, living anywhere in Europe.
The theme of the competition is ‘My Hero’. Artwork might celebrate a parent, caregiver, nurse or teacher, or it could be an imaginary superhero. We can’t wait to see who your heroes are!
Closing date for entries is Friday, October 3, 2025.
Learn more and enter here: https://dystonia-europe.org/art-competition-2025/

07/09/2025

07/09/2025

Do you have questions about ? Now is your chance to ask the experts! 💬
On October 10, Dystonia Europe will host a special 'Ask the Expert' webinar, and your questions can be put to our panel, which will include a neurologist, a physiotherapist and a neurosurgeon!
You can ask your questions in the comments below, or email sec@dystonia-europe.org.
👉 Register for the webinar at https://forms.gle/Hi51ScZmMAvoNZws5 to hear the experts' responses!

07/09/2025

Sarah Perides is an Advanced Nurse Practitioner within the Complex Motor Disorder Service at Evelina Children’s Hospital in London, caring for children and young people living with dystonia and movement disorders. Her core responsibilities include patient education and support, medication management, comprehensive patient assessment, and the programming and management of and devices.
Read Sarah's blog post, the first in our blog series, here: https://dystonia-europe.org/2025/09/sarah-perides-advanced-nurse-practitioner/

07/09/2025

💙Dystonia Awareness month post !!💙

Each Day during awareness month we are posting about different Dystonia's, Different conditions that Dystonia is seen in, Treatments and specialist services. We have lots of posts pre-written up but if you have any you feel we may have missed please message us and let us know and we will let you know either if a post is coming or if we can make a post to cover it 💙.

Today we are posting about Hemidystonia 💙

🌀 What is Hemidystonia?

Hemidystonia is a type of dystonia that affects one side of the body — the arm, leg, and sometimes the face on either the left or right side.

🔹 Causes

Hemidystonia is usually secondary dystonia, caused by another condition that has affected one side of the brain (especially the basal ganglia or thalamus).

Stroke or brain injury

Brain tumours or lesions

Neurological conditions affecting movement control

👧👦 Hemidystonia in Children

Yes — hemidystonia can affect children.
In children, it is often linked to:

Perinatal stroke (around the time of birth)

Traumatic brain injury

Cerebral palsy (dystonic type, sometimes affecting one side more)

Genetic or metabolic conditions (e.g., Wilson’s disease, GLUT1 deficiency, other rare disorders)

⚠️ Symptoms

Involuntary twisting or pulling movements on one side

Abnormal postures of the arm and/or leg

May cause difficulties with walking, writing, or using the hand

💊 Treatment

Medications (baclofen, trihexyphenidyl, Gabapentin,clonazepam, etc.)

Botulinum toxin injections for specific muscles

Deep Brain Stimulation (DBS)

For more informatiom about Hemidystonia please check out Dystinia charities

Dystonia Europe
Dystonia Medical Research Foundation
Dystonia UK

07/09/2025

| My Rude Roommate, Dystonia
A poem by a talented ADSG member living with Dystonia
Do not forget to add hashtags & in posts!
Many thanks to Helen Stanwix for allowing us to feature her poem
Find her other poem (Tremor & Sass) here » https://shorturl.at/voaWP
Post share: Use share option below or this link » https://shorturl.at/V9XFw
Additional link (poem website post) » https://shorturl.at/CYXer
More resources here » https://shorturl.at/xzzCF

05/09/2025

Look for a support group in your area.

Our friendly support groups are a great way to share, connect & feel supported. 💙

With even more meet ups happening around , now’s the perfect time to come along!

-Kent, 13th September, 11am-1pm, St Paul's Church hall, Orpington

-Oxford, 13th September, 2-4pm, John Radcliffe Hospital

-Liverpool, 13th September, 1-3pm, The Brain Charity

-Hampshire, 20th September, 2-4pm, St Nicholas’ Church Hall, Wickham

-Lancashire, 25th September, 2-4pm, Ribble Pilot Pub, Preston

-Cambridge, 27th September, 2-4pm, Cambridge Botanic Garden

To book your spot, please email info@dystonia.org.uk.
For more info, check out www.dystonia.org.uk/your-local-support-group.

04/09/2025

Good morning, Warriors. Be kind to yourselves today. ~ It's okay to not be okay ❤️ Danie

04/09/2025

📣 Register now for our webinar 'DBS Select: An Interactive Experience,' happening Wednesday, September 10th from 18.00-19.30hrs CET: https://forms.gle/MjWWoKZQgErpeuHq8
🧠 DBS Select is an educational tool to better inform patients and caregivers on deep brain stimulation ( ) - a technique widely used to treat movement disorders such as . 🖥️ Join Dr. Alexandra Boogers (Leuven, Belgium) and Dr. Harith Akram (London, UK) as they introduce the project, explain what DBS surgery entails, and discuss how daily life is following DBS.
✅ We look forward to seeing you there!