Jellycat
Distinguished member
- Joined
- Jul 3, 2010
- Messages
- 443
- Reason
- Lost a loved one
- Country
- IRL
- State
- Dublin
- City
- Dublin
So, today we went to our first specialist als clinic. Arrived for 4pm appointment and finished up at 8.30pm. Very impressive clinic with a prof who really knows her stuff. How I wish we'd met her earlier! Got more info today than almost all our other neuro appointments all put together.
So why nearly done? Although she didn't tell us anything I didn't in my heart know, she put it clearly, baldly and now it's out there. Zero function in all limbs. Zero speech, swallow catching up, dementia. Talking palliative care. How long? Who can say..that's in God's hands.
So though we were offered more appointments we just feel we have other things to do with the time and energy we have. Like sit in the sunshine. Like live peacefully rather than stretching every fibre to get on time to clinic. And practically such long days are borderline feasible anyway. Please friends don't think we are giving up. No, just choosing where and with whom the remaining energy is spent with. We already have a good relationship with our local hospice-seems like time to lean on them and let clinics fade into the background ...
So why nearly done? Although she didn't tell us anything I didn't in my heart know, she put it clearly, baldly and now it's out there. Zero function in all limbs. Zero speech, swallow catching up, dementia. Talking palliative care. How long? Who can say..that's in God's hands.
So though we were offered more appointments we just feel we have other things to do with the time and energy we have. Like sit in the sunshine. Like live peacefully rather than stretching every fibre to get on time to clinic. And practically such long days are borderline feasible anyway. Please friends don't think we are giving up. No, just choosing where and with whom the remaining energy is spent with. We already have a good relationship with our local hospice-seems like time to lean on them and let clinics fade into the background ...