Sharla Hume has a spinal compression injury and is very involved in communities related to coordination and movement disorders. Through this post, she shares some valuable experiences and explanations about ataxia with us.
I am a child at heart. On a mission with many towards a Cure for a Neurological Disease Ataxia. There are many different types. I have a spinal compression injury that has had many labels. My abilities with movement and lifting capabilities have changed. Dealing with chronic pain has most definitely changed me. I am not QUITTING! As I’ve slowed down, I have changed my perspective on movement while taking my time. Dealing with prohibited mobility has its perks I’d say, to make the best of what it is as well as taking time for small appreciations.
I grew up in Whittier / La Mirada area. Coordinated to play sports with great success. Grateful for those teammates throughout my life, especially the connections. I ventured to play softball most of my life through college at the University of North Dakota. Diagnosed with a Learning Comprehension Disability freshman year in 2004. I followed through with accepting the accommodations (listening to textbooks, a separate room, and extra time on exams). Playing ball at the collegiate level along with collegiate courses was difficult. Much time went into training, room prepping or recovering from practice and games, weightlifting, and conditioning. I believe I was so impacted by being on a team that my recovery felt good enough to contribute my skills when I was still injured, as I played through the pain. I was able to use the time in the training room as another study environment. I graduated in Recreation & Tourism, with a minor in Special Education. I contributed to many other team environments in my adult life as well. Being a Coach, River Guide for people with Disabilities, Outdoor Educator, School Aide, Program Leader, Sales Rep, Caregiver, Prep Chef, Food / Beverage, Food Delivery along with people as a Rideshare Driver.
In December 2015 I was in an auto accident, which caused whiplash. Overcoming the hardship of being the most injured in my life (C5–T1), but recovery is still on the horizon. My biggest fallback was movement, I stopped moving as much when my body was dealing with Cervical Issues, numbness, tingling, and pain. I’m approaching 6 years since my auto accident. It feels as though I have spiked my old injuries, including other vertebrae in the spine and arthritic ache in my joints. I have symptoms of being clumsier, dropping items using fine motor skills, and walking slower and differently. I use a tall walking stick, rollator, and back braces often. I have received a stand-up walker with arm attachments to help me hold my gait (upper body) to still be able to move with assistance. I’m having good days, needing no assistive devices, but sometimes the complete opposite, when my body is extremely restrictive. The daily living people do, like going to the bathroom and cooking, cause difficulties for me on some days. The changes I have gone through have been activated by a major event. Physical and emotional stress plays a major factor in healing. My emotional stress of losing my mobility may have conditioned my physical body to deteriorate. Fortunately, I have the mindset of HOPE.
Pain is one thing, but issues with lack of coordination and numbness have been difficult to deal with. Slowing down gives me the capability of doing more, as I can break it down into smaller lists, to accomplish big goals. Taking the time for that next breath. Taking the time to stretch. Taking the time to intentionally nourish the body with food, rest, and joy. Rehabilitation for the mind, body, and soul are the basics, for me. One day at a time, taking the time towards a lifestyle of “Health is Wealth” are my guidelines. Changing my environment has helped my mental fight, getting more prepared for my physical fight. Giving self-purpose gives me more abilities than my body can show.
Being clumsy has many variations. For those looking in, understanding people that may be clumsier has been misunderstood for as long as I’ve known it. As for myself, each injury had its countereffects. Compensating for one injury to adapt and overcome has been my trait since the beginning. I believe people do it all the time without thinking.
My introduction to Ataxia was during the summer of 2008, as a River Guide with SPLORE, National Ability Center. A trip specifically for people who have Friedreich’s Ataxia. Some people were wheelchair-bound and others used devices or people to assist them, especially f0r maneuvering around the river shore or uneven ground. This is known as a severe type of Ataxia. Ataxia is labeled from Genetic Identification using the Whole Genome Exome Sequencing. Nowadays researchers can test specific diseases searching for specific markers, within our DNA, found on the autosomal chromosomes. Many individuals with Ataxia have been overlooked and misdiagnosed throughout the world.
What is Ataxia?
Ataxia refers to coordination and balance. MOVEMENT! The backside of our heads is the region of the brain that is called the CEREBELLUM, responsible for all movement. In humans with a “normal functioning” Cerebellum, it would give us the ability to be fluid and active in movement. Once movement is learned, it is like muscle memory. As movement is lost through the progression of this disease, I believe it is important to be active, even if it takes tools, machines, or people to assist. The muscles and bones are a part of what gets the signals from the Cerebellum to coordinate the body, ranging from simple daily activities to major motor functioning. The signal plays a huge role in actively accomplishing movement of any kind. The signals travel through pathways (dendrites) like how blood and oxygen travel to supply our body. These dendrites are part of the structure of neurons. The minerals in our body such as calcium, protein, water, and salt (PH) levels are crucial, along with iron and much more.
People have many sorts of Movement Disorders. A few similar disorders are Leu Gehrig’s (ALS), Parkinson’s, Alzheimer’s, Muscular Dystrophy, or Cerebral Palsy for starters. These movement disorders can come from Genetic (hereditary), birth complications with early or late-onset, as they medically call it later in life (activated). ATAXIA IS NOT CONTAGIOUS!
You can also cause the Cerebellum to deform by means of life experiences: injuries to regions of the brain, brain stem, and spinal cord. Some types of Ataxias may be caused by how the body reacts to drugs. One drug to compensate for fixing a dominant issue changes the brain activity. Every action has its reaction. People living with Ataxia and other movement-related disorders have the external characteristics of a drunk person. Those who inebriated themselves with substances may experience staggered walking, bouncing eyes, speech issues, and swallowing. These are some of the most common issues of people living with movement disorders. Dealing with physical or emotional stress especially has proven to worsen all types of injuries and disabilities.
Envision a tree in your palm, full of leaves. These are the translators to those cells journeying to convert thought into action. A person in a coma doesn’t have functional signals to move, therefore not only the Cerebellum is cut off to perform breathing, and usually is hooked up to a ventilator (extreme case). In most cases of Ataxia of any kind, an MRI can show an image of movement disorder. This image would be the same tree yet without as many leaves to almost bare. As those fallen leaves were lost, somehow the Cerebellum is still working on trying to send signals and is confused. Confused because those leaves were the senders and translators to send the signals for the muscles to move. This is how I understand it.
Now envision a balance beam. Some people may be able to walk across with no issue. A less coordinated person could with an aide or even be unable to complete this walk. I used to be able to walk across the balance beam with no issue in gymnastics when I was young and coordinated. Now I would appreciate an aide nearby so I may still attempt to engage in activities I thought were out of reach.
My friend living with Ataxia from Australia said, “choose calculated risk”. Essentially, it belongs to adapting, but it goes much further than that. It takes extra thinking steps with minimal goals in order to achieve larger goals. More times than none, we as humans OVERCOME & ADAPT.
People living with Movement Disorders may struggle with accomplishing specific tasks. Every individual has their own path. To find commonality in so many Nervous System Dysfunctions I hope to cross paths and share what works. Beyond the labels of the disability, focus on what does work. Start somewhere. Deciding to take calculated risks and pointing positive is the stride, no matter how big, small, assisted with wheels, devices, and/or people.
My brother was misdiagnosed most of his life with Charcot-Marie Tooth, and they said he would end up in a wheelchair early in life. My brother has pushed the boundaries and theories of educated brain doctors – Neurologists. He wears noodles, a type of leg brace from the bottom of the foot to the top of the calf. He uses his willpower, a cane sometimes, and he is mentality-driven to continue to be as active as possible. In 2015, he took the Whole Genome Exome Sequencing test. The DNA map confirmed a diagnosis of ARSACS ATAXIA (Charlevoix-Saguenay Spastic Ataxia). This past August 2020 was the first time the ARSACS ATAXIA label was included on the Program Operations Manual System (POMS), a place for labeling Codes (ICP-9/10) for people with disabilities and used by people working for people with disabilities.
I took my brother’s diagnosis very hard. ARSACS ATAXIA findings were theorized to have shortened life span and be wheelchair bound before 20. The ARSACS mutations of Ataxia have the capability to duplicate signals (unnecessary traffic). Some mutants are even capable of cell death inside the Cerebellum before it attempts to relay motor functioning. He is one badass brother and I am thankful to say he is my big brother. These statements were scary to hear from the outside looking in.
My brother has his own daily regimen along with vitamins. I strive to meet that consistency. He has taken me on adventures as well as proven to be a beyond badass big brother of mine. He has helped me more than he knows, just by being him. As I have developed some symptoms with nerve and movement issues, I have been more driven than ever to seek guidance through different outlets and alternative healing.
In March 2016, I jumped on a plane to attend my first National Ataxia Conference in Orlando, FL. I engulfed myself in research and started involving myself with communities of Ataxia as well as other organizations searching for a cure. I incorporated myself with groups including people of Neurological Brain Change: Hope for Ataxia, ARSACS Around the World, National Ataxia Foundation, Hilarity for Charity (Alzheimer’s), Parkinson’s Foundation, Spinal Cord Injuries and NORD Rare Diseases.
As fear took over, after struggling with facts known about ARSACS ATAXIA, I was trying to look for assistance that wasn’t always needed at the time or available, to be prepared. My brother has proven that he could go beyond what research said. He stays active, takes vitamins, and keeps on keeping on. His motto is “Use it before You Lose it”. Many difficult conversations had to do with my perception of an understanding from the outside looking in. The open pathways of communication are as important as the circle of support. In no shape or form will I truly have a full understanding. However, I’m driven by hope and a desire to collaborate with others driving this similar path.
In research on brain correlations and movement disorders, Ataxia is a puzzle piece to the unicorn (ARSACS). I appreciate those people who have helped form me. I will always be venturing towards signifying those beautiful moments. The experiences I have been a part of with ALL types of individuals with disabilities have been my mental backbone. They help in overcoming those harder days. I appreciate those people who’ve shared their stories as well as the caregivers and speakers involving movement disorders.
As people, we are all wired in similar yet very different ways. Something was activated in progressing/changing the Cerebellum to dysfunction faster than we know it. The progression of balance and coordination has changed. “Getting back on the Horse” refers to getting back into action. Nonetheless how little or small the action, it’s necessary. From getting out of bed to brushing your teeth, cooking a meal, or getting to the restroom. The simple things of coordinated movement seemed more fluid until my accident, even with all the prior injuries.
What works for me
Water Therapy helps move my muscles more fluidly than on land. I like to call it “Gravity-lessness.” I’m able to accomplish quality exercise in the water while having less pain. Cold Water Therapy does intensify the pain for 1 minute while moving to keep warm. The tingly feeling may be the burning of body shock. Through movement, the body circulates and helps regenerate flow for around 20 minutes, and it has been my most effective form of therapy.
Chair Yoga and standing Yoga. They help to focus on the simplicities of breathing and guiding the body to engage in a fluid form of stretching. I would love to try Aerial Yoga and Bikram (Hot) Yoga.
Gardening helps me put energy into the land that carries the food I get to nourish my body. Gardening also helps my body stretch, being able to take breaks just by plopping on the ground, being productive. Getting up can be interesting some days. I love the concept of from the garden to the table and I finally have the opportunity. It took and will still take piles of work, but it gives me purpose and keeps me closer to nature. I have been very open with previous employers and volunteering with the fact that I am able to lift only 15 lbs. Joining conversations has helped me overcome what I struggle with. These groups have given me a better evaluation of my time spent, laughter, tears, being educated, brainstorming, and of course those people I have been privileged to meet. Community, nature, family, and animals play a huge role. I now live out of the city next door to a few horses, goats, chickens, and pigs, am humbled by more animals of nature around too. The bugs are much bigger and the cold can become harsh. As I journey through the winter, I will take calculated risks and engage with people to help them get the most valuable experiences and share what works. Some things that work for some may not work for others, as I believe it’s most important to share.
Cheers to the fight that brought us together.
Sharing is caring, so thank you Sharla Hume for sharing your experience with us!
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