What is Tone and How Does It Affect Celeste?
Tone is often associated with muscles, used to describe strong bodies. But it’s also used to describe how strong your muscles are while clenching and holding. It’s often paired with spasticity, a condition characterized by stiffness and involuntary muscle contractions, often caused by damage to the brain or spinal cord.
Spasticity is a challenge Celeste faces every day in her journey to get back on her feet, and her high tone doesn’t make it any easier.
Celeste is a strong woman who chooses to work out almost every day, strengthening her muscles and preparing her body to get back on her feet. These consistent, and often intense workouts, mean Celeste has high tone. Her muscles are very strong while clenching and holding, and they strongly resist being stretched. Therefore, when Celeste experiences spasms (caused by spasticity), her muscles clench and hold so tightly that it’s difficult to break the spasms, which are painful to endure.
Celeste experiences spasms every day. While sitting in her wheelchair, her knee will spasm and bend, so her calf is pressed hard against her seat and her foot falls under the foot-plate. Her high tone prevents Celeste from breaking the spasm, making it difficult for her to straighten her leg enough to lift her knee and get her foot back onto the foot-plate. When she finally does, her knee often spasms again, causing her to do the same routine once more. Furthermore, her leg can spasm without her foot falling off the foot-plate. In this case, Celeste’s high tone can keep her calf pressed hard against the seat for so long that it causes a deep groove in her leg and blood being cut off from her foot. This can be dangerous if left unchecked for too long.
Spasms almost always happen while Celeste is transferring from her wheelchair to any other surface. Her legs might curl under her chair, making it difficult to lift her hips. If this happens, she often has to take a moment to breathe, massage her muscles, and restart the transfer. If her legs don’t curl, they might shoot straight out after she’s transferred her hips and catch the frame of the wheelchair. If Celeste tries to pull away, her feet flex and lift the wheelchair. These types of spasms tend to happen whenever Celeste gets onto the bed.
Celeste doesn’t need to be moving at all, and her high tone causes spasms to be unbearable. If she is sitting or lying down, Celeste’s abs, back muscles and legs might spasm, causing her to straighten out like a stiff board. These spasms have thrown Celeste over the back of her wheelchair and slid her off the front.
Celeste’s high tone even affects the spasms that make her incontinent. Celeste’s bladder muscles tighten so hard that they can’t soften and stretch out to hold fluid. It’s called a Neurogenic bladder; fluid just flows straight through. It’s common among spinal cord injury survivors. To help with this problem, Celeste receives Botox injections in her bladder every six months. Botox is a neurotoxin produced by a certain kind of bacteria. When it’s injected into a muscle, it relaxes and softens it, allowing the bladder to hold more fluid. It’s a very effective technique in managing bladder control.
Trunk spasms happen the most frequently throughout the day. Celeste reports they feel like being on a boat in rolling seas.
There is one spasm that Celeste calls her Monster, and it’s the most painful one. The muscles around her right scapula will spasm so hard and fast that Celeste feels like she’s been shot. It’s tough to break. The Monster comes every few minutes or hours; it comes when it likes. However, the more active Celeste is, the less the Monster comes around.
And Celeste is very active! Throughout August, Celeste visited her gym, swam at least 30 laps every day, totaling 22.5 miles to raise just over $300 for the American Cancer Society! Why did Celeste swim so much? It helps with nerve pain, spasticity and tone. Swimming eases and even releases her tone, and allows her to move her whole body. Overall, swimming is a great way to manage her tone, spasticity and nerve pain.
While tone makes her spasms worse and more difficult to break, often like a rubber band stretched to its limit, it also means her muscles are staying alive. It’s a double-edged sword, one that often makes Celeste’s daily life immensely difficult. It elevates her stress levels and wears her out quickly. The only thing to make it better is to keep moving.
And a spinal cord stimulator. One of its many benefits is reducing spasms. It’s a big reason why On My Feet is fundraising for Celeste to receive spinal cord stimulation surgery at Verita Nuero.
Stay tuned to find out what Celeste’s next fitness challenge will be!
