Mitten
New member
- Joined
- Dec 27, 2013
- Messages
- 2
- Reason
- Loved one DX
- Country
- NZ
- State
- Auckland
- City
- Auckland
Hello everyone. Last week I got off a long-haul flight and a few hours later got the heartbreaking news from my mum that she has been diagnosed with MND. Bulbar onset. Normally I live only a couple of hours flight from her but my family (husband and two kids, 2 years and 8 month old baby) are at the moment on the other side of the world with my in-laws for Christmas. There is a 12 hour time difference but I am managing to talk to mum every day. We are devastated, I know everyone here must understand.
I am trying to decide whether to end this trip and go home. I just want to be with my mum at this horrible time, and also I want my children to spend as much time as they can with her while she can still speak, read stories etc. But on the other hand they are only just recovering from severe jet lag, and they spend so little time with this side of the family that I would feel very guilty for stopping the bonding that is happening with them and their other grandparents and uncle - although of course they would understand.
Mum has said that she wanted me to stay and get looked after to build up strength to cope with what's ahead. But in the past couple of days (Christmas) she seems less sure and so am I. Her symptoms have suddenly got worse, with severe fatigue and new leg weakness. I am so afraid of her losing her beautiful voice and would be devastated if it happened while I am away.
We are meant to stay another 3 weeks. Her symptoms started about five months ago with swallowing and slurring. I know bulbar onset is usually aggressive but I don't know what this means. Could she lose her voice in the next three weeks? Should I rush home? Those of you with the disease, if you have adult children and grandchildren, what did you need and want from them?
Thanks for any advice
I am trying to decide whether to end this trip and go home. I just want to be with my mum at this horrible time, and also I want my children to spend as much time as they can with her while she can still speak, read stories etc. But on the other hand they are only just recovering from severe jet lag, and they spend so little time with this side of the family that I would feel very guilty for stopping the bonding that is happening with them and their other grandparents and uncle - although of course they would understand.
Mum has said that she wanted me to stay and get looked after to build up strength to cope with what's ahead. But in the past couple of days (Christmas) she seems less sure and so am I. Her symptoms have suddenly got worse, with severe fatigue and new leg weakness. I am so afraid of her losing her beautiful voice and would be devastated if it happened while I am away.
We are meant to stay another 3 weeks. Her symptoms started about five months ago with swallowing and slurring. I know bulbar onset is usually aggressive but I don't know what this means. Could she lose her voice in the next three weeks? Should I rush home? Those of you with the disease, if you have adult children and grandchildren, what did you need and want from them?
Thanks for any advice