|Elba Nidia Figueros Nieves|
Elba Nidia Figueros Nieves
Nidia lives with her husband Juan Carlos Santiago and three children in Puerto Rico. Nidia was a teacher before she became ill; she loves to read and socialise with their local church group.
Her family wrote to say that they are "learning a lot and looking at life differently, increasingly valuing what we have and trying to enjoy it the most...The naadvocacy.org website was and is very helpful. It allowed us to gain access to information, genetic testing and corresponding with others.
Thanks to the Advocacy we have been in contact with highly qualified and committed people who are working to support people with this condition".
Froukje, 41, lives in Drachten in The Netherlands and was diagnosed with ChAc when she was 32. An accomplished artist, Froukje recently had 30 of her works selected for an exhibition in her nursing home. Froukje receives individual support twice a week which she mostly uses for painting. Her attendant helps by preparing all material, enlarging colouring pages as guidelines and taping the pencil to her finger.
"I'm in possession of a Lightwriter and because I can’t walk very far; I also have a wheelchair," Froukje writes. Every three months Froukje gets four injections on both sides of her face. She says the injections are painful, but they do help somewhat: "I no longer bite my lip, check or tongue till it starts bleeding," she says.
|Froukje Vlietstra and Arend Eedema|
To prevent biting, Froukje usually holds a washcloth in her mouth, which she takes out only for eating, drinking and smoking. She tells us her medications include Citalopram, Seroqel, Akineton, and Dornicum for sleeping. A peg-probe provides her medication and nutrients to keep her weight up.
In addition to her artwork, Froukje enjoys playing the piano and writing poetry, and most days her close friend Arend Eedema visits; they usually go out once a week and have also visited Disneyland in Paris. "I had a lot of fun and I’ve been in all the scary rides," she explains, but adds that she'd like to return to see the rest of the attractions. Froukje's parents also visit her each week.
Pete reports that the botulinum Toxin injections continue to work very well and he visits Queen Square in London every three months for this procedure. He is eating well although his tongue does continue to push food out; his speech therapist is looking for ways to help. Pete feels his balance and walking have improved but agrees there can be considerable variation from day to day due to different causes, including less sleep and overworking at his allotment garden. But his physiotherapist is pleased with his improvements and determination. Pete thinks that exercising to build up stamina has helped, and he has had a great reduction of the severe jerking movements of his head back and forth. He sends his best wishes to all NANews readers.