Jude, from Australia
Living with Fahr's
I started feeling tired and run down but was also very forgetful. My GP at the time sent me for a CT scan of the brain, which gave several options of causes. I was treated by a Neurologist in 1990 but told there wasn’t anything wrong.
Further 25 years, I found I was having a hard time spelling and couldn’t write as my hands cramped. I was still tired, not well and having memory problems, high anxiety, plus preferred to be home and not be social.
I have trouble mixing with people due to awful anxiety. I have trouble speaking on the phone and prefer emails as I can check and re-check as often as I want. I stumble around and am always bumping into walls and stuttering as I go to say anything. I found that I was very low in dopamine so am taking a natural supplement.
Top 3 Challenges
- I find it hard to mix with people
- I am finding it hard to cook anymore as it all seems to go wrong.
- I find it hard to remember what I said 10 minutes ago
Managing Fahr's
I am very low on energy, so take Oxygen drops along with a product called Mucuna Dopa to try which occasionally help with low energy and increases my dopamine.
A wonderful family who help me with outings, and a great husband who cooks the evening meal for us.
Internet friends from Fahr’s groups that give me hope and help me understand when I have a bad day
Fahr's Support
Fahr Beyond has helped by posting videos and helping me understand what I am going through when I have a bad day.
It would help if people understood more about what happens to our bodies, and why we can’t always do what others are doing. It would help to have a special person who we could go to to get help and who could organise people to help.
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.