My mother had Corticobasal Degeneration (CBD) and over the course of the first 18 months from her diagnosis her mobility disimproved considerably.  We were lucky to live in Dublin, quite close to the hospital where she attended the neurologist.  However, it wasn’t long before attending hospital appointments became a real ordeal for her as her mobility worsened and, consequently, attending any kind of appointment became very stressful and exhausting.

We had an excellent public health nurse who visited her regularly and was proactive in contacting the community rehabilitative team members who could support my mother’s needs at various times.  This meant that the community physiotherapist and occupational therapist visited my mother at home.  The benefit of this was huge – from a physiotherapy point of view, my mother was comfortable, relaxed and fresh when the physiotherapist visited, so her limited energy and concentration could be focused on learning the exercises she was shown.  The same could be said for the family member who was with her.  They could focus on remembering the exercises too in order to help her practice them.

From both therapists’ point of view, visiting her at home allowed them to see what her daily difficulties were in her own home – not in a strange or false environment this enabled them to present suggestions that corresponded with her normal, daily environment and the supports she actually had at home.

My mother attended speech therapy but this was at the hospital.  While the service was very good – my mother would already be tired from just getting to the hospital and in and out of the car, and anxious from the challenge of leaving the house.

From our experience, I think neuro-rehabilitative services are essential to PSP/CBD patients.  They support people to maintain their levels of mobility, speech, swallow and wellness.  They provide great ideas on how to address challenges that arise.  They give a positive focus to the person and their carers in having something proactive to do about their health and well-being – not just at the time of the appointment but in-between appointments too as usually there are exercise programs to follow or ideas to implement.

To be honest, for us the diagnosis of CBD was terrible, very negative and there was such a huge feeling of helplessness.  The neuro-rehabilitative supports definitely helped and prolonged my mother’s physical strength, mobility and speech. It was also psychologically important for her and all of us to have something to focus on that helped her, and the provision of these services at home was most beneficial as there was no stress involved in trying to get anywhere.

My mother lived for about 7 years after the onset of symptoms.  For a disease with no known cure and very limited treatment options, it is essential to have access to patient services which do help the person to live as well as they can with the disease and maximize the resources they have while they have still have them.

Elva
Dublin