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Member Recommendations

note: these resources are not related to Angioma Alliance; we receive no compensation for listing them 

 

 

Aphasia:

Voices of Recovery: A Family Physician’s Experience of Aphasia

Article written by a family physician who suffered a cavernous angioma hemorrhage resulting in aphasia and right-sided hemiparesis.



Brain Training and Apps

Brain HQ - Brain Training That Works

From the site: BrainHQ is a brain training system built and tested by an international team of more than 100 top neuroscientists and other brain experts. The exercises aren't only "scientifically designed"—more than 70 published papers how real benefits from using them. No other program has this level of proof.

Brain Games & Brain Training - Lumosity 

From the site: Cutting edge neuroscience personalized for you. Enjoy games and tools developed by a team of neuroscientists.

BrainLine.org- Life-Changing Mobile Apps for People with Brain Injury

From the site: The BrainLine team sorted through many resources to compile this list of apps for mobile devices for people with a brain injury, their families and caregivers.

Some helpful and free ones include:

  • Cozi Family Organizer: Family life organization app that includes a shared calendar, shopping lists, to do lists, family journal. This app allows you to stay in sync with your family.
  • Dragon Dictation: Voice recognition app that allows users to easily speak and instantly see their words on the screen. Send short text messages, longer email messages, and update your Facebook and Twitter statuses without typing a word. 
  • VerballyComprehensive Augmentative and Alternative Communication (AAC) app for the iPad. This app enables real conversation for those who have challenges speaking. Just tap in what you want to say and Verbally speaks for you.

 


Devices: 

Abilities Expo - The Event for People with Disabilities

From the site: Abilities Expo is about bringing necessary products and services together under one roof for the community of people with disabilities, their families, caregivers, seniors and healthcare professionals." 

"I go here once a year to see what's new in adaptive technology. My new easy lightweight wheelchair came from a vendor here."

Balance Wear Vests

From the site: BalanceWear® is a totally new, wearable “counter-balancing” orthosis that helps control balance and improves mobility in many people.

"I use an amazing vest called balance wear. They have vendors over the USA"

Brainport Technologies for Balance and Blindness

From the site: The BrainPort V100 is a non-surgical assistive device intended for orientation, mobility, object identification, and spot reading by individuals who are blind with no useful vision.

"This group helped my balance with the brainport device. It's not FDA approved so I participated in their research."

Clothing for Central Pain Suffers

From the site: Ways to dress more comfortably and clothing brand recommendations.

Ki Mobility (accessiblity)

L300 Foot Drop System by Bioness

From the site: A revolutionary medical device that may help you regain mobility and independence. The system’s gait sensor adapts to changes in walking speed and terrain, allowing you to walk easily on stairs, grass and carpet. Comfortably worn under most clothing, its unique design can help you eliminate the need for a rigid ankle-foot orthosis, or braces, and may reduce the risk of falls and injuries.

Massachusetts Eye and Ear (facial paralysis)
From the site: Mass. Eye and Ear is a Harvard Medical School teaching hospital, a world-renowned research center, and consistently ranks in the top five in the nation for both specialties in U.S.News & World Report’s annual hospital survey.

"This website directed me to gold weights in eyelids and facial reanimation surgery." 

Toe-Off Brace by Allard for Foot Drop

Walkaide – Functional electronic stimulation for foot drop:

From the site: WalkAide is a revolutionary FDA cleared medical device that leverages functional electrical stimulation (FES) to improve walking ability of people living with foot drop. The WalkAide is also utilized as a Neuro Rehabilitation tool by Clinicians.

note: member found this difficult to get it covered by insurance

 


Epilepsy:

Epilepsy Awareness/Seizure Disorder Group (Facebook)

From the site: To raise more awareness for Epilepsy and Seizure Disorders.

Epilepsy Foundation of America (Facebook)

From the site: The Epilepsy Foundation is an unwavering ally for individuals and families impacted by epilepsy and seizures.

Epilepsy Foundation of America

"In Michigan top hospitals will give quarterly free conference calls regarding seizure therapies, medication control, support groups, trials, conferences, types of seizures, best way to know your seizures (partials, grand mals, absent, etc) ideas on how to track your seizures, find newest medications, diet - adults and children.  And MORE!" 

Temporal Lobe Epilepsy Group (Facebook)

From the site: For those who have suffered (or would like to learn about) the unusual symptoms of Temporal Lobe Epilepsy! YOU ARE NOT ALONE!

 


Information: 

All About Central Pain  note: check out the links to the right of linked article

Children’s Hemiplegia and Stroke Association

From the site: The Children’s Hemiplegia and Stroke Association (CHASA) exists to help children who have survived an early brain injury that results in hemiplegia or hemiparesis.

Constraint Induced Movement Therapy 

From the site: Constraint-induced movement therapy (CI) forces the use of the affected side by restraining the unaffected side...Folow the link to find out more.

National Institute of Neurological Disorders and Stroke: Central Pain Syndrome 

From the site: Central pain syndrome is a neurological condition caused by damage to or dysfunction of the central nervous system (CNS), which includes the brain, brainstem, and spinal cord...Follow link to read more.

Neurology Now: Central Pain Syndrome

Ask the Experts: Q "I was told that my hemorrhagic stroke caused “central pain syndrome.” What is central pain syndrome, and what are considered the best treatments for it?"

 


Medical Expenses:

Patient Advocate Foundation

From the site: provides patients with arbitration, mediation and negotiation to settle issues with access to care, medical debt, and job retention related to their illness.

 


Prescription and Medication Information:

Ask A Patient

From the site: When you need to know if a medication really works, why not Ask a Patient? There is more to know than what the ads say. Learn from the experience of real people who have taken drug treatments.

"I always read other patient reviews on here before starting a new medication."

Drugs.com

From the site: "To empower patients with the knowledge to better manage their own healthcare and to improve consumer safety by assisting in the reduction of medication errors."

 


Support:

Athletes with Foot Drop (Facebook)

From the page: By joining the Get Back Up movement, you’ll become part of a supportive, encouraging group geared towards helping each other reach goals we may have previously thought impossible. Whether simply walking to the end of the driveway, playing with the kids for five more minutes, or competing in a national triathlon, join us today to inspire and be inspired!

Brain Injury Association of America

From the site: With a network of state affiliates, local chapters and support groups, we are the voice of brain injury. We are dedicated to increasing access to quality health care and raising awareness and understanding of brain injury.

"We meet once a month this group has been vital to my recovery. We even do fun things together ."

Foot Drop: Get Back Up Today 

From the site: Get Back Up has spawned a national grassroots movement of people determined to overcome the challenges they face.

 

Last update: 6.16.2015