I am living in North Spain.
In few wors these are my experiences on PSP disease:
My wife suffers from PSP. The first symptoms (difficulty speaking) will be presented in March 2012. The definitive diagnosis was in June 2015 (Difficulty in eye movements).
Palliative treatment of the disease is as follows:
1) Avoid falls: transfer techniques, seat belt, wheelchairs, etc.
He has regularly used a wheelchair since June 2016.
2) Prevent cold and flu.
3) Prevent solids or liquids from reaching the lungs. Add thickeners to drinks.
4) Gymnastic tables 6 days a week: passive in bed (Move all major muscles) and active (helped by 1 or 2 people): Go up and down 50 steps, walk 200-300 m, speech therapy exercises, exercises ocular muscles.
5) Socialization. Almost every evening, social activity: cinema, city walk, show, museum, conference, visit grandchildren, snack with friends, etc.
5) Palliative medication against depression and insomnia: 1/2 Sertraline-50 at breakfast; 1/2 Sertraline to food; 1 Lorazepan-1mg one hour before dinner.
Drops of tear to the eyes.
We have a part-time hired person to perform gymnastics, personal hygiene and dressing. Another person lives with us with holiday on weekends.
Releasing the caregiver and allowing him / her to have life outside the home as well as to avoid strong or continuous physical and psychic efforts is fundamental.
Any suggestions to improve the quality of life of a PSP patient or caregiver will be welcome?. Thanks.
If I can help dont hesitate.