PSP support

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

 

 

 

Study day

NIRDP hosted a study day for health professionals and care providers in Strabane, Co Tyrone, on 6th March. Participants came from all over the Western Health and Social Care Trust area, and from Donegal.

The event was chaired by Dr Colette Donaghy, consultant neurologist, and there was expert input from

  • Dr Aine Abbott, GP
  • Majella McConville, Nurse Specialist, Huntington’s Disease
  • Kat Haines, Nurse Specialist, Progressive Supranuclear Palsy
  • Alison Dick, Motor Neurone Disease Network Coordinator

Carers Pat and Fiona, and Paul, who lives with MND, spoke about their personal experiences of the impact of rare disease.

In the afternoon there were workshop sessions

  • Compassion fatigue- how am I doing?
  • Family scenario-who do I tell?
  • Challenges in rare disease- supporting the carer

Completed evaluations show the event to have been successful, and more of the type have been requested.

If you have any particular areas of interest you’d like NIRDP to support you with, do get in touch- join us or contact us.

We look forward to working with you.