Pamela, Australia
Living with Fahr's
I have idiopathic basal ganglia calcification. I am undiagnosed with Fahr's through genetic testing which was negative.
I first had a CT scan in 2010, which showed the calcification. I have a lot of symptoms that vary from day to day e.g. dysarthria, dystonia, spasticity/ataxia, cognitive issues such as decision making, word finding, short-term memory issues, absent seizures, dysphasia, balance issues.
I struggle every day in some shape or form, but I manage to somehow to keep a positive attitude and just take it as it comes and get through as best as I can.
Top 3 Challenges
- Fatigue
- Not knowing what every day will bring depending on how my symptoms affect me
- Managing my symptoms
Managing Fahr's
Getting a good night's sleep.
Support from family and friends.
Keeping as fit and healthy as I possibly can e.g. physio, Pilates and hydrotherapy. Managing my stress levels.
Fahr's Support
I have had a lot of support from the Fahr's group as we all share the same story and it helps to unload where other people know how you feel and how it impacts your life.
If you would like to share your story please get in touch with us by emailing enquiries@fahrbeyond.org and a member of our team will be in touch.