Progressive Supranuclear Palsy is a rare neurological condition, usually affecting people over 40. It affects movement, balance, vision, speech and swallowing. There is no cure for the condition and treatment takes the form of symptom management, with significant input from community based Allied Health Professionals.
A film made this year about living with the later stages of PSP watch?v=fbeLWp9QHss
Actor Dudley Moore, on his experience watch?v=VVWGutY0xbw
The PSP Association provide a helpline 0300 0110 122 and specialist support to families and clinicians.
There are volunteer led support groups in both NI and the Republic- these give an opportunity for families to share information and support, get a cup of tea and maybe a chance to have a wee weep, amongst people who are/ have been in exactly the same situation.
Dublin support group 6 November 12.00 hours to 14.00 hours in Mater Misericordiae University Hospital, Centre for Nurse Education, Ground Floor, Classroom 4. Nelson Street, Dublin 7. (opposite Eccles Street entrance to Hospital).
Belfast support group 13 November 2-4pm, Marie Curie Hospice, Kensington Road, Belfast, BT5 6NF
Ballymoney support group: February, Robinson Hospital, date to be confirmed
Southern area support group: March, Craigavon/ Dungannon, date and location to be confirmed
For information about NI support groups, please contact Doris Mason 07714 823116, or Fiona McLaughlin 07902 813198
For information about support in the Republic of Ireland, please contact Jim Logue 01 837 5020 or Caroline DooleyMartin 01 8383606