Mobility and Balance

What Is Your Fall Risk?

The Dangers Of Mobility And Balance Impairment

If you’re living with mobility or balance problems, this is a familiar story. You’re innocently walking, and out of nowhere, an angry rogue floor knocks you down. No reason, just walking, then BOOM,  down you go. Of course, laughing about an angry rogue floor helps lighten an embarrassing situation. The reality is balance problems will compromise your ability to exercise, puts you at risk for falls, injuries, or possibly breaking a bone.

Gary’s balance had slowly been deteriorating. His gait noticeably changed. His stance is wide, and he has trouble lifting his feet off the floor. As a result, it’s impossible to stop a fall. He was visited by a home physical therapy program a few years ago, but the director felt his neurological problems were beyond what the program could help.

Ataxia in superficial siderosis describes the incoordination resulting from loss of voluntary muscle control, often beginning with your arms or legs. This form of ataxia is considered a symptom of your superficial siderosis condition and differs from Hereditary ataxia or Sporadic ataxia, which are distinct neurological diseases. Superficial siderosis patients frequently experience different cerebellar ataxia symptoms combined with signs of central and peripheral vestibulopathy.¹

Ataxia or Vestibular?

There seem to be two underlying causes in Garys’ case. First, sometimes he describes a dizzy spinning sensation when he stands, closer to vertigo. Second, 15 years ago, he landed in the hospital after an exceptionally severe bout of rotational vertigo. This event was prediagnosis, so his ENT put him through a series of vestibular testing. Unable to determine the cause, the event was recorded as a vestibular event, cause unknown. These episodes of vertigo eventually tapered off to not happening ten years ago. That is until recently when it’s begun again.

Gary’s cerebellum and brainstem are heavily coated with hemosiderin and showing some atrophy. His symptoms tick off most of the ataxia boxes. His balance and gait are perfect examples of classic superficial siderosis progression. In the early years, he only experienced balance problems on uneven surfaces or in shadowed areas. Now it’s unsafe for him to walk without the aid of a walker. Recently he tried to cross the bedroom in the dark and fell, twisting his smaller aluminum walker into a mess.

There Is Always A Test

In 2018 Gary went to the kinesiology unit for a balance and gait evaluation. It helps to have a baseline test score for two reasons. The first is simple, how great is your fall risk? Second, your physical therapist is qualified to determine which assistive devices would best suit your case if they know your risk score.

Also, for superficial siderosis patients who have chosen to try chelation therapy, if your score remains constant with no progressive decline or if you see an improvement, then it’s a good indication your deferiprone is working.

POMA: Performance-Oriented Mobility Assessment

The performance-oriented mobility assessment (POMA).4 is commonly referred to as The Tinetti Test, in honor of its creator, Mary Tinetti. The evaluation was designed to indicate a fall risk accurately and maneuverability level to produce a better predictive result on re-testing.

Cerebellar degeneration or atrophy is often the underlying cause of cerebellar ataxia. The cerebellum plays a significant role in coordinating your fine motor function, gait, balance, vision, and swallowing. Cerebellar ataxia will also cause fatigue, affect your executive function, personality, mood, and increase your risk of depression.

The assessment contains two sections, gait and balance. Each part has a checklist of activities scored on points from 0 to 2, 0: profoundly impaired, 1: slightly impaired, and 2: normal function. For example, a standard gait test will return a maximum score of 12 and balance a 16. Both section scores are added together to determine the overall test score with a maximum of 28 possible.

Tinetti Tool Score Risk of Falls
≤18                   High
19-23       Moderate
≥24                   Low

Mobility Aids

walker for mobility and balance

Gary’s primary care physician had been the one to strongly suggest it was time to transition from a cane to a walker. I’ll say it wasn’t a welcome suggestion; however, when he scored a total of 15 on his Tinetti test, the physical therapist ordered the first of a few models Gary has now used. If we go anywhere there will be a lot of outside walking he uses a wheelchair.

Maintaining Control

Physical therapy, Vestibular Therapy, and strength training programs are great additions to your regular care plan. Rhys recently shared his physiotherapy session experience. Keep an eye out for our BEST LIFE series for ideas on how you can improve your balance and mobility.

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Rori Daniel

Living With Superficial Siderosis began as a way to keep family and acquaintances updated after my husband Gary was diagnosed with Superficial siderosis in 2014. In 2019, became a partner in the Superficial Siderosis Research Alliance. Together our alliance has expanded into research, advocacy, and patient education. Rori Daniel, Editor,

One Comment

  1. Everything that Gary experienced is exactly the same as me. I first was diagnosed in 2019 but noticed something was going wrong in 2017.
    I was a bridge Forman and in 2017 I noticed I had to hold on to thing to keep from falling. I was diagnosing myself thinking I had vertigo. In June of 2017 I was really having a hard time and I just reached my vested pension at 60 years old with 20 years of service. I actually had 22 years service but I wasn’t 60 till June 7th 2017.
    I was on the end of the bridge and it seemed like I wasn’t in control of my movement. That’s when I decided it was time to go before I hurt myself or hurt someone else tying to help me. I retired in June 27 2017.
    My body really changed in 4 years.
    I was able to walk, climb and do physical work in 2016-17. Now just 4 years later I’m using a cane, walker, motorized buggy, can’t see at all when it’s dark, can’t lay down on my back, sleep in a recliner and having a hard time hearing. ?
    So far no medicine is helping and it seems like everyday I’m getting worse. 
    I’m reaching out to a doctor in Boston who specializes in SS to see if he can help. Dr Michael Levy. 
    Thank you for taking the time for listening. Mike T.

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