What is Hydrocephalus?

According to the Mayo Clinic, Hydrocephalus is caused by a buildup of cerebrospinal fluid in cavities called ventricles deep within the brain. The excess fluid puts pressure on the brain. The pressure can damage brain tissues and causes a range of symptoms related to brain function. People can get diagnosed at any age and it develops more often for infants and adults, 60 and older. Hydrocephalus can be caused from traumatic brain injury or even infection. Physical symptoms may be related to nausea and vomiting, irritability, brain fog, forgetfulness, sleepiness, headaches, trouble with balance, change in personality, memory loss, progressive loss of thinking or reasoning skills, coordination and balance problems are also present.

Toni’s Journey- Movement as Medicine!

Toni was diagnosed with Hydrocephalus when she was only 5 weeks old.  Toni experiences many symptoms that can negatively impact her day to day life- making movement and social activities very important for maintaining her symptoms. She uses medication management to help with her pain, but this wasn’t effective enough for her. This has led her utilizing assistive devices- such as a wheelchair or cane to support her balance and to reduce her pain. Individuals that have hydrocephalus can also receive surgery for a shunt, which can restore and help people to maintain healthy cerebrospinal fluid levels in the brain. Toni got her first shunt when she was only 6 weeks old and has to get a new shunt periodically.

Toni is a part of the Hydrocephalus Association- an organization that provides resources for people who are diagnosed with Hydrocephalus looking for support. This association includes, virtual meet-ups, social support groups, discussion of a variety of different topics, and support through life transitions. A variety of conferences are also offered that where they present on newer technology, treatments and resources- such as an e-shunt, which requires a less invasive surgery compared to a regular shunt.

Toni values advocacy for herself and networking with professionals. She enjoys sharing with others how Hydrocephalus impacts her life. It took Toni longer to complete school due to having intensive surgeries to manage her pain and frequent hospital visits. Her shunt makes her more susceptible to other infections such as Meningitis. In general, comorbidities are likely to occur such as chronic pain and fibromyalgia.

In every season, it is very important to her to consistently put in work at the STAR Center. Toni found out about STAR from a friend- and continues to advocate to other friends about the benefits of STAR! She is active in many of our programs such as- Inclusive Pickleball, Connect and Move, Boccia, and Drummercise- her favorite class where she gets to move to the music! At STAR  you can find Toni smiling, laughing, and socializing with others frequently. Toni strongly believes that she has gotten stronger and healthier from working out at the STAR Center including improvement upon her endurance, balance, and mobility. Exercising with STAR Center keeps her going and calms down her fibromyalgia- “movement as medicine,” she said. Staying active helps her function better at home or out and about, on her bike and more.

It has been an honor to witness Toni grow here at STAR in her own self awareness of her body, advocacy for others in the community, creating and fostering relationships with others, and improvement to her overall health. Thank you for sharing your story- Toni! We appreciate you and are so happy to have you apart of our community.

Written By: Anelise M.