Questions to ask the consultant

[Otter66]

Hi. We’re in NE England. My mum was diagnosed with PSP last year. She’s 86 and although her mobility is very limited and her fine motor skills are deteriorating she’s doing pretty well. Can still speak clearly but it’s tiring for her, no cognitive impairment though she needs a bit more time to process, no issues with swallowing, pain under control with paracetamol. No major continence issues and her vision is good. Her mood is very low though and she has trouble sleeping and has terrible RLS. She has an annual follow up with the consultant at the end of the week. We’ve got a few questions for him but I wondered whether there are questions that you or the person you care for either asked, or wish you’d asked the consultant? I don’t expect she’ll see him again for at least another year so just trying to get the best from the appointment. Hospice is already involved and as a family we are managing to care at home with a bit of paid help with showering/housework. Have also had useful OT input. Thanks and have a good day.

[AJK2001]

Ask if there any referrals you think would be useful for your Mum. Found having a community matron invaluable, they would visit at least monthly and more often when required, helped with other referrals as we needed them. If the consultant requests MDT approach for you that would be very helpful. Otherwise I'm afraid they are of very little use and there came a time when we stopped going as the effort was too great and the benefit nonexistent. Not the consultant's fault, just the nature of an untreatable condition.

[Otter66 in reply to AJK2001]

Thanks for replying AJK2001. I feared as much. We’ve got hospice social worker, OT, and well-being advisor involved but not the community matron so I’ll ask about that. It’s going to be an effort to get there for 10am appointment but feel like we should go as it’s only the first follow up. All the best to you and yours x

[Willowden]

Hi,

If you’re not already you could ask to be linked with a Parkinson/movement disorder nurse. Mum has had two different ones, helpful with referrals and keeping an eye on progression. Similar to a community nurse but with more experience of PSP. Mum’s currently visits or phones every three months and is contactable in between if necessary.

You mentioned your mum has low mood and it might be worth discussing a low dose antidepressant. Mum was against it for a while but in the end agreed to give it a try and it does seem to have taken the edge of her anxiety and low mood without any visible side effects.

Hope your appointment is usefulx