From Fear to Fierce: Overcoming a Rare Disease
Imagine the routine start to your day, only to be disrupted by a mysterious condition slowly robbing you of your ability to perform everyday tasks, one by one. The initial shock and fear of this enigma can swiftly transform into frustration as doctors grapple with identifying the underlying disease. This experience is not only terrifying but also more common than you might imagine.
According to the National Institutes of Health, there are roughly 7,000 rare diseases that impact an estimated 25 to 30 million Americans, which translates to about 1 in every 10 Americans. These statistics are undeniably alarming. However, the true challenge lies in how to confront such a condition when it doesn't fall within the realm of common diseases.
One Client’s Journey: Discovering Transverse Myelitis
"Last October, I thought I pinched a nerve one morning while drinking my coffee” remembers our client, George. “Within an hour, I lost the use of both of my hands, and arms and partial control of my legs.”
As if that wasn’t scary enough, it took weeks to figure out what the problem was. “After two separate hospital stays and many tests and potential diagnoses, we determined I have transverse myelitis.”
George had never heard of transverse myelitis until it barged in and started making daily life as he knew it practically impossible. It's a very rare neurological disorder: only about 33,000 people in the United States have this inflammation of the myelin sheath that protects the spinal cord. Of course, the spinal cord is the “superhighway” for nerves traveling between the brain and every other part of the body. So, as the inflammation progresses, it disrupts critical nerve signals that usually zip between the brain and the rest of the body. Quite suddenly, a person can lose function and sensation in the arms, hands, and legs, just like George did.
The Holistic Approach That Made a Difference
In George’s case, just getting the right diagnosis was hard enough. Once doctors knew he had transverse myelitis, they arranged a few weeks of rehab and in-home therapy, which didn’t seem to help him at all. It was frustrating.
“I wanted to get better to return to normal at home for my family, and get back to work as soon as possible,” says George. “I also DJ as a hobby and losing functionality in my hands obviously limited all of those things. Finally, I was ready for a visit with Dr. Paula!”
When George first came to A Life in Balance, we were impressed with his excitement and determination to work toward regaining the overall function of his hands, even though "Dr. Internet" had given him a disheartening prognosis. “Some things I read said don’t expect progress after about six months, but it’s been almost a year, and I still see noticeable progress and keep improving."
Our unique approach to holistic physical therapy in Flemington (PT), as well as occupational therapy (OT) services here at ALIB, have been key to helping George improve and go past what others thought was possible. Dr. Paula and our incredible occupational therapist, Sarah Stangota, developed a cohesive, whole-body approach.
As Sarah puts it, "Our therapy has literally been a retraining of basic fundamental skills. Cognitively, George knew what he wanted to do, but his central nervous system was misfiring….a lot!"
Sarah adds, “He originally thought we were just going to work on his hands, but little did he know his rehab would involve much more. Our approach is to ‘work from the inside out’. We worked from his core strength to his shoulder strength to his arm strength and then to his hands! George trusted the process, was consistent with his home exercise program, and each and every week we see gains.”
As George puts it, "I tried going to a hand specialist at one point to focus on getting functionality back. However, without the holistic approach of combining OT with a blueprint for PT and strengthening my entire body, it was ineffective. Sarah continues to look for new approaches to therapy and what can be done for my hands.”
The Journey Towards Independence
Since January, George has been fiercely working on both PT and OT here at ALIB, and he has made incredible strides forward. He has regained the ability to manage his self-care routine and can even drive and return to work. He still has a ways to go with motor control of his individual fingers, hand strength, grasp, and fine motor skills, but every time we see him, he’s doing better.
“George’s therapy has exemplified the true meaning of what occupational therapy does,” says Sarah. "OT helps individuals FUNCTION from the time they wake up in the morning until the time they go to bed at night!”
George continues to work hard every day, and he sees welcome progress toward full independence. "I’m DJ-ing again! I recently posted my first mix since everything happened, and it felt so amazing to be doing what I love again."
Don’t let a mysterious diagnosis keep you down or scare you. Face the future with fierce determination and get help from our holistic therapy team at A Life in Balance! We can help you get back to the life you love living again. Reach out to us today!
