PSP WhatsApp group

[MartinHLondon]

My mother is living in Essex, UK with PSP and my father is her full time carer with support from my sister and myself.

Reading the stories of so many people living isolated with a relative with PSP I wondered if there was interest in setting up a WhatsApp group for people to join and support each other? I would be interested to read peoples thoughts.

Thanks

Martin

[Khalissi]

Hi Martin, I am also based in the UK and would love to be part of a group where we can share and ask questions in a safe environment. I learn something new everyday. Similarly like you, my mum is a carer for my dad who was diagnosed in 2018 and I am helping out where I am able to.

[SharonandRichard]

Hi Martin

Brilliant idea! I'm caring for my husband who was diagnosed with PSP in June 2019. At the moment we're working together with it, but it's very challenging at times and getting worse now , especially with his speech and choking. It would be great to have another form of contact.

[LuisRodicioRodicio]

Hi MartinHLondon!

WApps groups are useful if the group is not too large and there is a remarkable discipline to apply comments that are really necessary.

Having a "local" WhatsApp group in which relationships can be established that allow effective support and help due to proximity (recommending a nearby external caregiver, offering a wheelchair, facilitating ways to prepare specific meals, etc.), I think , that a local WApp group can be useful from a practical and emotional point of view.

Hug and luck.

Luis

[wolfdogs]

Hi I'm previously from Essex but now I'm Cornwall.

Mum is in the advanced stage of PSP and now moved to a Nursing Home.

I think a Whatts App group would be a great idea for support as I often feel so alone dealing with this horrible condition'

Mandi

[Possibilites]

Hi Martin, I also agree about the local group which is not too large and difficult to manage.

My mum lives is harlow and has recently been diagnosed with PSP.

[Doublereeder in reply to Possibilites]

Hi Possibilities,

I'm in Essex and my Mum also has PSP. A new support group has recently been set up. I'll pm you a few more details tomorrow.

[Kasenda]

Hi Martin, may I suggest that you and your sister look into starting a local support group if there isn’t one in your area? You only need to meet at a garden centre to start with. It’s so useful to meet people face to face as we already have this group to chat online. The PSPA will help you to get started. I did this in 2015 as I felt alone with living with PSP and the group is still running monthly ( Woking group) though I no longer lead it due to my husband’s deterioration. We have more more people being diagnosed and it’s so good to be able to help the newcomers with our practical experiences of the illness etc. We also have fun together doing fundraisings. We hire a community room once a month and enjoy tea and cakes together and be able to support one another in our journey with PSP and CBD. Let me know if I can be of further help. Best wishes.

[Hidden]

I like the idea too! Husband in final stages of PSP and we live in South London UK.

[Millidog]

Hi Martin, I look after my husband (63) and am based in West Dorset. Having only moved here 18 months ago and then us receieving my husbands diagnosis its a little scary and at times isolating. I find this site useful but would prefer a UK Whats App Group and perhaps if we have enough interest we could split into a few geographical groups e.g. London, SE, SW etc where we may make greater contacts with people in the same region. I know the PSPA have some local groups who meet up f2f and on zoom and soem also have a Whats App group but not all areas are covered

[Doublereeder]

Hi Martin,

I'm in Essex and my Mum also has PSP. A new support group has recently been set up. I'll pm you a few more details tomorrow.