2018

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Review 2017 News and Tidbits

January 2018

 

Pain Research

 

We’ve uploaded a new research paper on the pain relief and anti-inflammatory properties of corydalis (yan hu suo). Gary has been using a traditional Chinese herbal blend for the neuropathy pain in his feet for quite a while now with excellent results.

For more information about his use you can read our blog posts: The Neuropathy Chronicles and The Neuropathy Chronicles 2.0

The paper is titled “The Antinociceptive Properties of the Corydalis yanhusuo Extract.”

Wang L, Zhang Y, Wang Z, Gong N, Kweon TD, Vo B, Wang C, Zhang X, Chung JY, Alachkar A, Liang X, Luo DZ, Civelli O

 

February 2018


‘Joie de Vivre’ Carol Schiewe’s Unshakable Love of Life

by Eric Garner, BCHD Senior Communications Specialist

Carol Schiewe refuses to let anything strip away her joy for life. And by anything the 57-year-old member of BCHD’s Center for Health & Fitness (CHF) means anything.

A malignant tumor in her breast that was larger than any her doctors had ever seen didn’t dampen it. A second cancer diagnosis just a year later, this time in her thyroid, couldn’t shake it. And being blindsided in early 2016 with news that she was just the 271st person in the world to be diagnosed with a rare degenerative brain disorder that threatens to leave her immobile, deaf and incontinent, well, that actually made her laugh.

“When they said I had superficial siderosis, I smiled and said ‘okay, well, check that one off the list,’” laughs Carol, a loving mother, wife and former registered dietitian for trauma and cancer units. “My reaction may seem odd to some, but there’s not much that can get me down at this point because I stopped taking myself so seriously a long time ago. I live in the moment and take the time to appreciate the life happening around me. This allows me to find joy in little things, like going to concerts with my daughter. My challenges are honestly just a blip on the radar.”

Carol applies this positive, can-do attitude to every aspect of her life, including fitness. Back in 2010, the year of her second cancer diagnosis, she joined the Center for Health & Fitness — a low-cost community gym operated by Beach Cities Health District in Redondo Beach — and began taking a slew of exercise classes, doing cardio and working with a personal trainer five to six days a week to keep her weight down and offset the negative effects of cancer treatments.

In the six years since, despite enduring an unimaginable number of surgeries, treatments, tests and doctor appointments, she still hasn’t deviated from her exercise routine. In fact, she’s lost 30 pounds, packed on lean muscle and reports to be “in the best physical health of my adult life.”

We sat down with Carol to hear more about her inspirational journey as well as to discover what fuels her insatiable resolve to keep fighting, laughing and living with contagious joy.

Q: Wow, where do we start? What was it like …

A: “Being diagnosed with cancer twice in two years, and then finding out about my brain disorder?”

Q: Yeah, how do you even begin to process that?

A: “The first cancer diagnosis was surreal. I was so used to being on the other end of that conversation from my time as a registered dietitian in cancer wards, that it really hit me hard to hear the news. But I did cancer by acceptance, meaning I didn’t go to any support groups or seek counseling. I just followed my doctor’s instructions, took the treatment and kept moving forward. Kept checking off the boxes and following the plan. That approach worked for me. One step, one day at a time. It’s like that song 99 bottles of beer on the wall, ‘you take one down, pass it around’ … I put my head down and just……read more

 

If you’re in the UK ?? this February you need to check out the folks at thesilentbleed.co.uk

party silentbleed

 

March  2018

LIFE WITH SUPERFICIAL SIDEROSIS

LAST REVIEWED 13/03/2018

BY DEBORAH

‘You’re quite a celebrity around here,’ my neurologist says, as mum and I meet him in London for the third time since my superficial siderosis* diagnosis in March 2017.   

Surprisingly, for someone who’s found fame for having a rare disease, I’m relieved. It’s taken five years to get diagnosed and specialists are finally noticing my nerve pain, ataxia (lack of coordination and balance), bladder weakness, crippling constipation, increasing deafness and most lately, tinnitus.

MY NEW ‘NORMAL’

I still remember waking up one morning in June 2013 feeling like my left knee was in a vice. It was to become my new ‘normal’ as the sensation gradually spread. Sadly, all the neurosurgeons did was repeat MRI scans on the spinal abnormality they operated on when I was just three years old, then tell me nothing has changed. Everything has changed……. Continue reading

 

May 2018

 

August 21, 2018 / Announcements, News

Social Security Fast-Tracks Decisions for People with Severe Disabilities

Agency Expands Compassionate Allowance List   Nancy A. Berryhill, Acting Commissioner of Social Security, today announced five new Compassionate Allowance...
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August 1, 2018 / News

Living with a rare neurodegenerative disease

  The Australian Brain Alliance www.brainalliance.org.au August 1, 2018     In April 2015, Fiona Parkinson went from an ordinary...
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June 11, 2018 / Announcements

The Patient Registry Registration Instructions

The website address is:    superficialsiderosispatientregistry.org   Take your time and look around the public areas of the website. The...
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June 10, 2018 / News

This man has had a bleed on his brain ever since he was eight years old

Doctors discovered a tumour in his brain two decades ago By Mark Smith Health Correspondent   Wales Online 11:41, 10 JUN 2018...
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June 7, 2018 / Announcements

The SS Patient Registry

  The Superficial Siderosis patient registry is completing the final stages of testing this week. Other than needing a coding...
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May 19, 2018 / Announcements

Coming Soon! Patient Registry Website

Going Live Soon: Superficial Siderosis Patient Registry Website   The new Superficial Siderosis Patient Registry website will be going live in a...
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May 19, 2018 / Events

Breaking The Sound Of Silence, June 8th 2018

A Benefit For the Sufferers of Superficial Siderosis June 8, 2018, 6:00 PMThe Dragonffli, Crumlin Street, NP4 6AE PontypoolDonations On Entry £5
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