MND and Covoid

[matthew55]

I get a copy of the letter that my neurologist sends to my GP after an appointment. The last one said that normally when someone presents like me they would see me fortnightly but due to the current situation this is not possible. My next appointment is in two months. Having Bulbar is stressful enough without a pandemic eh? ☹️😉😊

[Lynne K]

I get a copy of my neurologists’ report to my GP too. My last appointment was over WhatsApp and my next appointment is in about 2 weeks. They’re 3 monthly. I’m hoping that the up and coming appointment is done the same way but they haven’t said yet.

Haven’t they offered Skype or WhatsApp appointments to you? Do you attend Salford, like me? Love Lynne x

[Barry52]

Hi Matthew,

Generally the frequency of visits to an MND specialist centre is quarterly and in the community we have the care team i.e. physio, speech and language, dieticians and OT. COVID has certainly impacted on the service as now they are offering telephone or video check up.

Best wishes,
Barry

[matthew55]

Hi Lynne, yes I'm under Salford, I get the video but my neurologist can't hit me with metal objects or stick needles in me over the web! I hope I get to meet some of you there. 😊

[Lynne K]

I’m in Radcliffe so if you’re close enough, once this lockdown for us is over we could meet in a cafe or something. Others would be welcome. It’s Middleton for the local MNDA get together. I’ve never been and it’s suspended at the moment but that’s an option in the future. I met up with Dina near to me in a cafe attached to a supported housing place. That’s small but 2 of our wheelchairs fitted. Sadly Dina is no longer with us.

See you sooner or later, Lynne

[Olivia H]

Hi Matthew
It can vary too, I attended every 3 months initially, but after over 8 years, just once a year now, and I can phone if I need to go more often, but it very much depends on your symptoms and individual needs. All the best to you.
Olivia