Living With Superficial Siderosis

Superficial Siderosis Journey

Saturday morning may have begun at our local community urgent care but it soon turned into a run to the emergency room 65 miles further down the road. Bless my daughter for driving the second leg because the past three weeks have been nonstop blood tests, appointments, and procedures. I’m tired and I know Gary’s feeling the strain. This…

Read more →

Living With A Compromised Neurological Reserve

Neurological Reserve

Metabolic stress is not a friend to the very young, elderly, or those who’ve been dealing with superficial siderosis for awhile. If you’re healthy, enjoy a great immune system, exercise body and mind you easily bounce back after an infection or surgery. Your brain’s capacity to handle metabolic stress and adapt to a disease affecting the brain is referred…

Read more →

Small Victories

I wrote an earlier piece on livingwithss.com detailing Gary’s intermittent swallowing problem. The Danger Of Dysphagia outlines some serious risks you may face if you choke while eating or drinking. Gary has been evaluated on a regular basis since that first baseline test. Steps In the Right Direction Earlier this summer, Gary had been referred to an endocrinologist for…

Read more →

Is It Time To Visit A Neuropyschologist?

Neuropsychologist

Your brain is a complex system that controls your body, guides your thinking, and filters emotional response. When something like superficial siderosis damages neural function questions arise on how exactly a person’s thoughts, feelings, and cognitive function will be affected. If you or those close to you notice changes in memory, thinking or behavior it may be time to…

Read more →

Your Daily Medications

Memory loss

Imagine living a life that revolves around medication. I know many of you can relate. Try keeping track of 200 pills a week with nine different daily dosage times. What time is it? Did I take my pills? Did I forget my medicine? What’s next when memory becomes such a problem your reminder strategies begin to fail?

Read more →

Surviving The Neurology Ride

surviving neurology

A visit to the neurologist often reminds me of stepping up to ride the tallest most twisty ride in the park. You start off slowly inching along, anticipating a thrilling experience with just a hint of fear. Then the bottom falls away and down you go. Sometimes the ride is exciting, everything you expected. Often the anticipation and hype…

Read more →

The Question Of Restless Leg Syndrome

Restless Leg Questions

  Restless Leg Syndrome (RLS) has become an interesting discussion topic in Superficial Siderosis circles so my question: Is there a connection between SS and RLS? Or does the fact RLS affects 8% of the population¹ suggest it’s simple law-of-averages accounting for so many people now reporting problems? What is RLS? Restless legs syndrome (RLS) is a neurological disorder…

Read more →

When you are the RARE in Rare Disease

Livingwithss

Superficial Siderosis. Subpial Siderosis. Infratentorial Superficial Siderosis. No matter how your doctor officially labels your diagnosis odds are no one has the slightest idea of the battle you are about to face. A rare neurodegenerative condition  so uncommon it’s often not recognized by the rare disease organizations tasked with supporting us.. What is Superficial Siderosis? Superficial Siderosis is a…

Read more →

Summertime Neurology Blues

Summertime Neurology1

  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 escape the unplanned detours lately. We headed out with our long list of questions and a feeling of excitement. The latest MRI results should be ready for viewing…

Read more →

Neurodegenerative Vision Problems

vision

You move your eyes more often than your heart beats. Vision problems are one of the mysterious, unexplained symptoms people are plagued with long before their doctor knows what is wrong. While not as frequent as sensorineural hearing loss or balance issues a large percentage will suffer from some vision disturbance. Anisocoria, diplopia, nystagmus, dry eyes, or phantom images…

Read more →

What’s Your Fall Risk?

Fall Risk 600×350

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 angry rogue floor knocks you down. No reason, just walking, then BOOM,  down you go. Laughing about a rogue surface helps lighten an embarrassing situation, but mobility problems can impair your ability to exercise,…

Read more →

The Danger Of Dysphagia

Dysphagia Danger2

  Most of us never consider the physical mechanics involved with eating or drinking. Open, chew, swallow, repeat. It turns out swallowing is a complicated process which demands a perfectly coordinated effort between your brain, nerves and muscle system (If you have superficial siderosis your inner alarm bell should be blasting). The term Dysphagia covers all swallowing problems but…

Read more →

New Technology With Hearing Loss

Hearing Loss Tech

  Searching For Clarity 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 letters (sounds) are missing, so you wind up playing an internal guessing game. We find ourselves replaying a frustrating loop of “guess the word.” Sometimes Gary can…

Read more →

Taming Chronic Headache Pain

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 and over. A chronic headache or migraine sufferer will understand the long and tearful journey. Imagine the torture of a migraine mixed with the agony of a cluster headache for 76 unending…

Read more →

Vitamin D : Feed Your Brain

Vitamin D Feed your brain (2)

Vitamin D : Feed Your Brain   One detail Gary’s neuropsychologist recently brought up was his low vitamin D level. Everyone knows calcium and vitamin D help maintain healthy bones, but we had no idea the role it plays in cognitive decline. Studies found patients with a vitamin D deficiency experience faster declines in both episodic memory and executive…

Read more →

The Frustration Of Hearing Aid Down

Cone of Silence

If hearing aids are your lifeline to the world, you get what a pain it is when one goes down. When both go down at the same time, it’s a tragedy. If this happens to someone you care about, be prepared to step up. Frustration is the polite description of what is coming. Gary had complained his hearing aids…

Read more →

Neurology Roadtrip

superficial siderosis on the brain

We made our trip to Gary’s regular neurology appointment this week seeking answers to his headaches. Since he left the private healthcare sector last January and entered the VA system road trips are the rule. His PCP, blood testing lab and primary audiologist are in a clinic in Texas. The hematologist, regular cardiologist, back-up audiologist, dermatologist, and coumadin clinic…

Read more →

Dialing Down The Pain

Feel My Pain

Gary always hurts.   It’s a fact-of-life he can’t run from; from his head to his toes, 365 days a year, 24-hrs a day. Pain. The days his pain scale reads 3 or 4, those are good days.  Most days he can look forward to hitting 5 or 6, but if a headache decides to join in at full…

Read more →

Privacy Preference Center

    Necessary

    Advertising

    Analytics

    Other