Support groups in London

[dario73]

Hello,

My mother has been diagnosed with PSP, 3-4 years ago. Fortunately the disease has been progressing slowly but other conditions make it increasingly challenging, such as visual impairment unrelated to the disease. Furthermore, my circumstances are demanding since I live in London (UK) and my mother lives abroad, which forces me to manage caregiving responsibilities at a distance, with little support from family (I am the only son). It would be very helpful to find a support group, preferably in person, to share experiences, and I appreciate any pointers.

Thank you!

[David750]

Hi Dario73, there is a support group in London you can attend. Please phone the PSP Association's Helpline (pspassociation.org uk) ask for their Helpline Care Navigator for tbe London area and discuss you concerns. They can advise and provide literature (in English) for your family abroad. All my very best wishes.

[dario73 in reply to David750]

Hi David750, thanks for the pointer, I will give them a call. All the best.

[GB07]

Hi Dario,

I’m also in London and share the care of my mother. Would be happy to meet up for a coffee and to offer support…

Clarice

[dario73 in reply to GB07]

Hi Clarice,

Thanks for your offer, it would be great to meet up and share some experiences. I will reach out via chat.

Dario

[LARWLSN]

Hi Dario73, I am in London and am part of the monthly virtual support group via PSPA. It is a very good place to start getting good information. You and I have something in common, as my mom, with PSP, is not in the UK either. So I understand that stress and strain well. Even with her not in the same country, her care has completely taken over my life. If you want to meet up, let me know.

[dario73 in reply to LARWLSN]

Hi LARWLSN,

Thanks for the information about the virtual support group. I will reach out via chat to see if we could meet up as well.

[PineEater]

...visual impairment unrelated to the disease. .Please let's know the visual impairment unrelated to the disease you are talking about. I ask that as unfortunately most of the opthalmologists are unaware of PSP. That is a very sad situation in the field of ophthalmology. I know many ophthalmologists who are authors of the books on ophthalmology and yet not aware of eye movements related to PSP diagnosis ! In fact, a simple look at the eye movements, and the initiation of the diagnosis of PSP..Please make sure that you don't let your mom fall at all. Best wishes to you and your mom.

[dario73 in reply to PineEater]

Hi PineEater,

The visual impairment is, as far as I know, unrelated to PSP but caused by glaucoma and uveitis. All the best