Let’s face it, those of us with Superficial Siderosis have trouble navigating. Steps, floors, rugs, rugged terrain, small hills, clumps of dirt, or irregular pathways, we are, in a word, screwed. Damned if we do, damned if we don’t. Even if we take precautions by walking around clutter on the floor, we’re going to fall if we lose our balance.
One problem of mine includes getting in and out of my bathtub. I’ve lost my balance on my tub seat and found my naked butt on the cold, hard porcelain, legs still up on the tub chair. Lacking upper body strength, I can’t push myself up, so as I’m pondering my next move, my cellphone rang. I was (thankfully?) able to answer it, not that the person on the other end could help me anyway. It was, of all people, my ex-husband. So there I sat naked, wet, crying, snapping, and whining about being stuck; the bathtub was too high (it was.)
My tub was a whirlpool Jacuzzi. Nice when I could USE it. I refused to have him call my daughter to come to help me out. I told him I could do it myself (eventually). He offered to hire someone to replace it with a good old American Standard bathtub. Jacuzzi, be damned! After an hour, I was able to turn myself over and slide my arms first over the side and onto the floor, then pull myself up somehow. The problem is the more exhausted I get from my efforts, the harder it is to rescue myself.
The Cold Hard Facts
Risk factors have been, and continue to be, medication or poor strength and balance, something we in the Superficial Siderosis community are all too familiar with. We already know what will cause us to fall. A fall will not email, message, or tap us on the back to let us know its expected arrival time. It happens when you aren’t paying attention; it happens when you least expect it. It happens so fast you can’t recount the exact details of your fall.
I FELL, AND I CAN’T GET UP! (or, A Funny Thing Happened on the way to this Article)
YES…I did find myself crying and laughing simultaneously over the phone to the 911 operator. I fell in the kitchen after turning too quickly. My feet, lagging three seconds behind my brain, twisted around. Down I went taking a kitchen stool with me. I laid there for a minute or two, taking stock of my extremities and head, waiting for the shock to abate, the reality of the situation set in. I was alone on a ceramic floor. On my back and couldn’t get up.
I managed to get on my hands and knees, but my arms kept collapsing under me. The more I tried, the faster they collapsed from exhaustion. I righted the stool, but it kept coming down on top of me when I tried to pull myself up, just as it had when I grabbed it initially to stop my fall. Gee thanks. So I swallowed my stubborn pride, military-crawled to the counter, reached up, and grabbed my phone. I plugged in 911, and when the operator answered, I cried -no, I lie- I WHINED: “I can’t believe I’m saying this, but I’ve fallen and I can’t get up!!!” I spurted this out, half crying in frustration and half laughing at the absurdity of it all.
The gal said I wasn’t the first to say that. I explained what happened and insisted, NO AMBULANCE … PLEASE! After telling her grudgingly how much I weigh, she said she would send help. The next thing I know, two big burly Suffolk County Police Officers showed up at my door. Dear Lord, if Chippendales was hiring. Dear Lord, I looked like the fool, laying there, swallowing that pride I mentioned earlier.
Risk factors related explicitly to Superficial Siderosis may include (not limited to):
- Lower Body Weakness
- Walking and Balance Difficulties
- Superficial Siderosis linked ataxia describes the incoordina... More
- Prescription Medications
- Vision Problems (Nystagmus is a vision condition in which the eyes make repea... More, Diplopia is the medical term for double vision. Binocular d... More)
- Vestibular disorders, disequilibrium
- Postural or orthostatic hypotension (neuro-cardiogenic syncope)
- Autonomic nervous system disorder
- Hazardous conditions
They grabbed my arms, and up I stood. One helped me to the sofa in my living room, while the other grabbed some ice packs (do they make ice packs for bruised egos?). After I told my daughter later what had happened (I can’t keep a secret from her), she, her sister and brother, immediately decided that I MUST get a medic-alert device. Of course, I yessed her to death and dragged my feet doing it.
The Harsh Reality
Any of us is a potential statistic. From 2007 to 2016, fall death rates in the US rose 30%. If rates continue to increase, we can anticipate seven fall deaths every hour by 2030. Oddly enough, according to CDC data, the largest populated states, New York and California, report the lowest number of deaths per year, between 28-53 per 1000.
- Every 11 seconds, an older adult is in the ER for a fall
- An estimated that 646,000 fatal falls occur globally each year
- Falls are the second leading cause of unintentional injury death
- 80% of these deaths occur in low and middle-income countries
- Adults over 65 suffer the most significant number of fatal falls
- 37.3 million falls each year are severe enough to require medical attention
- In 2018, 27.5% of adults 65 and over reported at least one fall in the last year
- One in five falls causes a severe injury such as a broken bone or head injury, with over 800,000 requiring hospitalization
- Falls are the most common cause of TBIs (Traumatic Brain Injury)
Meanwhile, Back At The Ranch
The next time I fell, my daughter’s husband had to pick me up. I finally broke down and got a medic-alert device. It arrived and sat there, untouched. I’d get to it when I get to it. That is until I fell backward in the garden one afternoon.
It was August, four days before my grandson’s 3rd birthday party. Covid be damned, we were having a family and friends pool party with a bouncey castle. So I had a great idea to weed, plant flowers, and shrubbery so it would look nice. It was a sunny Wednesday afternoon, so any excuse to get my hands into the soil. My daughter was in the back cleaning up for the party. I was in the front, weeding my side garden. I took one step back. One lousy step! And down I went backward. I put my arms out to catch myself and hit the ground.
I picked up my left arm; my hand was perpendicular to my arm, and I had this weird protrusion coming out of the other side of my wrist. I tried to straighten my hand. Nothing! I willed it to straighten. Nothing, I had no feeling whatsoever. Then the pain set in. I grabbed my wrist and held tight so the bone wouldn’t pop through the skin. (It did anyway). I screamed and screamed And SCREAMED. No one heard me. Now I wished I set up that medical alert thingy.
My entire neighborhood had their central air conditioners on if they were even home. Meg was either out of earshot or busy with my grandson. My usually busy street was empty this hot August afternoon. So I screamed louder still. My next-door neighbor just happened to turn her AC off and open her window for the first time since summer began. She heard me and came running. The rest is a blur.
In the ER Trauma, it took three orthopedists way too long to set my wrist. I had dislocated it, suffered a compound fracture, and fractured my elbow as well. This time, it wasn’t cute. No muscle-bound policemen were picking me up off the floor. I spent a few days in the hospital and ended up sleeping through my grandson Everett’s 3rd birthday party. Within a short time, I set up that bad boy medic-alert thingy and put the fancy pendant necklace around my neck. (After another fall, the ER CT Scan tech thought my pendant was a Wiccan symbol. I paid extra for it, but I didn’t want that plastic thing around my neck!)
Since that terrible day, I now average one serious fall once a month. It has become evident to me that my situation is getting worse. It isn’t funny anymore. I’ve been in the ER at least three more times if memory serves. I don’t like admitting it to myself because it makes it more real, and I don’t like losing to Superficial Siderosis. I’m sure my neighbors must have a betting pool going on how many times the ambulance will be at Marybeth’s house.
Since August, I’ve been badly bruised, sprained an ankle, broken a bathroom door, given myself another concussion, bruised my sternum, and broken my nose once again. AND I’ve had to use my medic-alert at least twice. In the 15 years before August, I’ve had a dislocated cervical spine, broken wrists, broken ribs, lacerated my spleen (bye-bye spleen), concussions, sutures in my head, a severely broken nose, and more, much more.
- Medicare $29 billion
- Private Insurance or Out-of-pocket $12 billion
- Medicaid $9 billion
Medical costs include:
- Hospital and nursing home care
- Other professional services
- Rehab facilities
- Related rehabilitation modalities
- Community-based services and support
- Use of medical equipment
- Prescription drugs
- Insurance processing
The Economic Burden
Additionally, there is the cost factor. Falls are very costly. Each year, about $50 billion is spent on medical costs related to non-fatal fall injuries. While $754 million is spent related to fatal falls. In 2015, the total medical costs for falls totaled more than $50 billion, with Medicare and Medicaid shouldered a staggering 75% of those costs. According to Medicare and Medicaid, along with private insurers, the cost stats can be broken down as follows:
Meanwhile, our baby boom generation is in the 60 and older demographic now. This has become, and will continue to be for the next 30 or more years, a quandary. As our baby boom generation ages out, the next generations are half – to less than half – of our numbers. Today a 3 or 4 child household is the exception rather than the rule. This means, of course, that there will be less and less money paid into the social security system and more into private insurance premiums.
Those of us with Superficial Siderosis balance issues know that we will fall. Regardless, I don’t know if I’ve been able to convince myself to slow down and be careful. I tried to hang a birdfeeder yesterday and ended up on my butt in the snow after losing my balance. This steadfast and fiercely independent girl, who taught herself to ride a bike, play keyboard, read, change a tire, rewire a lamp and fix a toilet, now can’t even stand on a stepladder to change a light bulb without falling off. Yes, denial looms large. At least with me, it does. Physiologically, I understand the mechanics of falls as they relate to Superficial Siderosis. I warn others what can happen and how to avoid it. But that adage rings true with me: “Physician heal thyself”… but … I don’t.
I worry about my future. I fear that I might end up in assisted living. This fiercely independent person who loves her privacy will end up having to deal with interference and intrusion. I worry about becoming deaf. Like Beethoven, I have been playing classical music on the piano since I was a child. I cut my teeth on opera and Tchaikovsky. Even though I deny it will happen to me, I eventually won’t hear what I’m playing. I won’t play ‘air violin’ with Vivaldi or daydream to Grieg. “At least I won’t lose my eyesight to see when I paint,” I tell myself. (I won’t, right?) I can paint from a wheelchair. Boy, I’m sure glad I’m not athletic!
Birds Of A Feather
Superficial Siderosis does not discriminate. Together we are finding our way through a dark forest with blinders on. We are a family comprised of different socioeconomic, religious, political, ethnic, and geographical backgrounds, but our disorder binds us together. Stronger than most, this binding that we neither want nor understand. Every day is a new adventure called Superficial Siderosis, specific to every case and varies with each member of our club. The number of confirmed diagnoses is growing and growing. Six years ago, I thought we numbered 100! Since then, our number is at least four times that. We are in good company. As I’ve written, I don’t know how my story will end. I am alone and divorced. My dream is a small house with one level (and a porch with rocking chairs) in a little Southern town, far from my snowy, over-taxed northeast state. My house is way too large for me anyway, but this cockeyed optimist holds on to the dream of moving and starting a new life to continue the last 20 (or 30?) years of my life. For now, the ambulance will continue to show up at my house, EMTs, and police in tandem. I’m not yet in the “65 or over” statistics, but I AM a statistic. My falls will continue more often, becoming a cause of unintentional injury.
A home visit physical therapist told me in uncertain terms, with factual coldness, that she “doesn’t want to have to work with me in a brain-injury unit’. If I continue to go outside and walk on uneven terrain, she said I am increasing exponentially, my chances of falling and hitting my head. Reality is sinking in finally. Will I walk outside with a walker? No, an unequivocal no. I’m not there yet. Physically, yes, emotionally and intellectually, no. Am I prepared to become an unintentional death statistic? Is another serious injury landing me in the ER, hospitalized, as happened in the case of a broken rib lacerating my spleen and causing internal bleeding that put me in intensive care for a week.
That all depends on me. The harsh reality of these statistics is hitting home. In this ‘club’ that no one wants to be a part of, this harsh reality is now our way of life, our modus vivendi. However, we are a strong, kind, and intelligent bunch that strives to make a difference. I have a guiding mantra that I often repeat, “When God closes a door, He opens a window, but it’s hell in the hallway.” Superficial Siderosis is our life and our reality. Be kind to yourself, keep your eyes and ears open, and watch out for potholes on the sidewalk!
Those stats do not cover the long-term effects of injuries such as permanent disability, dependence on others, lost time at work, household duties, and reduced quality of life.