What is dystonia? Yvonne Maxwell knows all too well.
Dystonia is a neurologic movement or gait disorder that is very debilitating. It is considered by many in social media to be in the classification of Invisible Illnesses. Listen to Yvonne Maxwell in the UK..."I Jump For Dystonia" Challenge (See Video 1). Excerpt from this most excellent and a Super, under-4-min video:
"Definition of Paingry: [peyn*gree]:
(adj.) The description of the attitude of one living in chronic pain when they become snippy and short tempered. Usually brought about by any or all of these situations: pain medication has worn off, exhaustion, depression, frustration, fatigue, helplessness, and most of all severe pain."
Dystonia Challenge by Yvonne Maxell:
- Upload your photo (single or group shot) onto Official Facebook Page, Jump for Dystonia.
- Indicate your location, please
Video 1. Dystonia Awareness Video 2016. Dystonia is one syndrome that is frequently overlooked, misdiagnosed or not taken seriously. Let's increase awareness!
Types of Dystonia:
Blepharospasm Eyelid and brows are involved in muscles with spasm.
Oromandibular Tongue and jaw (mouth) involvement (AKA cervical dystonia)
Laryngeal or Spasmodic Airway / vocal cord involvement: can lead to suffocation
Generalized Dystonia Abnormal movement (i.e., spasmodic torticollis) of neck & shoulders
Focal Hand Hand, or hand and forearm muscles with abnormal movement
Also known as 'writer's cramp'
Diagnosis by Rating Scale
The Movement Disorder Syndromes community owns a list of Scoring Scales to help differentiate fine lines of distinction between the dystonias and other muscle abnormality diseases like the dyskinesias (kinesiology is the study of body movement; dyskinesia is 'dysfunction' in body movement). The list of MDS-Owned Rating Scales are seen in Image 2:
Talk to your health care provider to see if you need therapy, alternative medicine, optimization of nutrition, and anti-inflammatory diet, medication, Botox(R) Injections, an option of Deep Brain Stimulation (DBS) Surgery, or much more. Certainly you need good sleep, day and night cycles, and some physical activity just to feel good. And a hug releases the chemical oxytocin that is also an anti-depressant. There's just so much you can do! So keep Believing!
The power of a positive mind, mindfulness and self-advocacy are important to gain a diagnosis and definitive treatment. I think it's great to find a social media Group that assists you in your journey - and this is what the Stanford Medicine X program is all about: empowering patients. The great and fantastic thing to know is that Yvonne Maxwell's is empowering you!
Check Yvonne's recent video is empowering and accompanied by a song with these words:
"I can make it alone.
My sisters and me...
I can make it alone.
My sisters and me...
You ready to jump?
Get ready to jump.
Don't ever look back!"
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International Parkinson and Movement Disorder Society Links to International Organizations
International Parkinson and Movement Disorder Society MDS Video Collection
Partner in Parkinson's Movement - Find a Movement Disorder Specialist
Thank you for reading my writings!
Dr Margaret Aranda is a Stanford Medical Alumni in Anesthesiology and Critical Care.
She and her daughter were in a tragic car accident 10 years ago. Her daughter is just fine!
Dr Aranda suffered traumatic brain injury, dysautonomia and vertebral artery dissection, becoming afflicted with Invisible Illnesses. She won the 2011 Perseverance Award from the Invisible Disabilities Association, a hallmark in her Patient Advocacy. Since then, Dr Aranda continues to write and pursue her passion to bring all mental, physical and spiritual efforts together for patients with
#DrMargaretAranda #YvonneMaxwell #Invisible #Dysautonomia #TBI
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