Livingwithss

LATEST ARTICLES ( 43 )

• Summertime Neurology Blues

  

  We hit the road last week for another trek to see the neurologist. We usually enjoy these long rides up into the heart of Arkansas, but it seems we can’t... Read more

  Posted on 20 June 2018 HEALTH

• The Superficial Siderosis Patient Registry

  Your Superficial Siderosis community advocates, the Living With Superficial Siderosis website and The Silent Bleed -Your Superficial Siderosis Charity have... Read more

  Posted on 10 June 2018 HEALTH

• Cookie And Privacy Policy

  Living With Superficial Siderosis  invites you to read our Cookie and Privacy policy We use an opt-in email system for notification of new articles when they ar... Read more

  Posted on 24 May 2018 HEALTH

• Our Superficial Siderosis Community: Meet Rhys Holmes

  Meet Rhys Holmes Rhys Holmes loves music. A 28-year-old Welshman, he spent time in the music program at Glamorgan University. An accomplished lead guitarist... Read more

  Posted on 22 May 2018 HEALTH

• Decoding The Superficial Siderosis MRI

  

  2016 MRI Superficial Siderosis " data-medium-file="https://i1.wp.com/livingwithss.com/dir/wp-content/uploads/2017/12/Sense-Head-8.jpg?fit=300%2C300&ssl;=1"... Read more

  Posted on 18 May 2018 HEALTH

• Understanding Ferriprox

  

  There is some confusion when it comes to understanding Ferriprox and superficial siderosis. Ferripriox (Deferiprone) is a prescription drug whose primary purpos... Read more

  Posted on 04 May 2018 HEALTH

• Tips For Developing Great Patient-Provider Communication Skills

  Communication must be a two-way street Rare disease patients often battle a variety of complex clinical symptoms. A visit to your specialist often results in... Read more

  Posted on 03 May 2018 HEALTH

• The Power Of Community

  We’re proud to publish the first of many collaborations with blogger and Superficial Siderosis activist Rori Daniel. Find her powerful, insightful and... Read more

  Posted on 30 April 2018 HEALTH

• Neurodegenerative Vision Problems

  When Your Eyes Have A Mind Of Their Own You move your eyes more than your heart beats. Vision problems often are one of the mysterious, unexplained symptoms... Read more

  Posted on 23 April 2018 HEALTH

• The Common Thread Searching For The Unexplained

  Diagnosis of superficial siderosis is rare. It’s so unique in fact if you searched for information on one of the national or international rare disease database... Read more

  Posted on 08 April 2018 HEALTH

• Exploring Ayurveda For Cerebellar Ataxia And Pain Control

  Western medicine is innovative, but if you search through PubMed, you find very few drug trials for degenerative cerebellar ataxia. Read more

  Posted on 28 March 2018 HEALTH

• 20 Strength Exercises When You’re Fighting Mobility Problems

  

  Finding a user-friendly exercise program for patients diagnosed with related ataxia symptoms isn’t easy. Gary, for example, is limited to lifting 10lbs, so he... Read more

  Posted on 20 March 2018 HEALTH

• 20 Strength Exercises When You’re Fighting Mobility Problems

  Finding a user-friendly exercise program for patients diagnosed with related ataxia symptoms isn’t easy. Gary, for example, is limited to lifting 10lbs, so he... Read more

  Posted on 20 March 2018 HEALTH

• What’s Your Fall Risk?

  If you’re living with a gait and balance impairment, this is a familiar scenario. You’re innocently walking, minding your own business, and out of nowhere an... Read more

  Posted on 12 March 2018 HEALTH

• What’s Your Fall Risk?

  

  If you’re living with a gait and balance impairment, this is a familiar scenario. You’re innocently walking, minding your own business, and out of nowhere an... Read more

  Posted on 12 March 2018 HEALTH

• The Danger Of Dysphagia

  

  Most of us never consider the physical mechanics involved with eating or drinking. Open, chew, swallow, repeat. It turns out swallowing is a complicated... Read more

  Posted on 06 March 2018 HEALTH

• The Danger Of Dysphagia

  

  Most of us never consider the physical mechanics involved with eating or drinking. Open, chew, swallow, repeat. It turns out swallowing is a complicated... Read more

  Posted on 06 March 2018 HEALTH

• New Technology With Hearing Loss

  Conversation for people with sensorineural hearing loss can feel like a never-ending game of hangman or charades. The clues are there, but the most critical... Read more

  Posted on 26 February 2018 HEALTH

• New Technology With Hearing Loss

  

  Searching For Clarity With Hearing Loss Conversation for people with sensorineural hearing loss can feel like a never-ending game of hangman or charades. Read more

  Posted on 26 February 2018 HEALTH

• Taming Chronic Headache Pain

  

  Gary woke this morning without a headache. The first pain-free moment in 12 very miserable years. Complete pain relief. I just want to read those words over... Read more

  Posted on 18 February 2018 HEALTH