Recent content by weavie

Thank you for posting for me Max xx

Hi Tillie, Just came on the forum for the first time in a long time. So great to see your photos of your trip, looks like you have had a fun time. x

Thank you everyone for your kind messages of support. This has been the hardest week of my life. I am so sad to have lost my mum and can't believe I will never see her again. We had a lovely memorial service for her yesterday, she would have loved it. I'm not sure how I am going to manage the...

My beautiful, brave mum passed away at home yesterday morning. I will miss her more than anything, but thank God this is over. She can now sleep peacefully and I am comforted in the thought that she is free of a life of MND. Thank you to everyone here who has helped make these last few weeks a...

Thank you Nikki. You have put my mind at ease. I had wondered if the age of onset indicated it to be more likely sporadic, especially as there has been no one on mum's family tree with ALS. I was worried also for my girls, but I'll try to put it out of my head now. I really appreciate your...

There is no ALS in my mum's family history, so I just assumed she was a sporadic case and there was no chance I could get it. Having read some of the posts here, I am now not so sure. She was diagnosed aged 69, but had symptoms for 12 months before this. Any thoughts would be appreciated as...

I have been following this post thinking how lucky we have been that mum hasn't had any falls.....until today Mum fell in the bathroom and hit the shower door when she fell backwards. Dad got a neighbour to help get her up off the floor. Not a good day.

Hi Sally, I've just read your original post in this thread and my situation sounds very similar to yours and I guess I am replying to tell you I know exactly how you feel. My mum has bulbar onset and is now very weak in the advanced stages. My dad is her main carer, but I visit nearly every day...

My mum is getting weaker and I think the carbon dioxide must be rising in her blood. I have visited her at home twice today and both times she couldn't open her eyes. She could hear me and nod, but couldn't wake up properly. She did have a carer help her with the shower this morning and she woke...

That is exactly how I feel about it Tillie - no regrets. To know I have done all I can at the time, I hope will bring some comfort when all this is over. When I knew mum's voice was slowly failing I said to myself I would ring and speak to her every day. I did that until just recently when she...

Thanks Paulette. Thankfully all went ok. They chose not to use any sedation as a safety precaution (I was pleased) and the gastroenterologist was happy to do the procedure with her sitting up to about 40 degrees ( I was pleased) . It was quite painful having the original tube removed, but the...

Tomorrow will be a stressful day. Mum is due to have her PEG tube changed. She is going to our local hospital day stay unit. I am worried about her having sedation as she is so sleepy anyway. I don't know if she has to lie flat for the procedure, because she can't breathe when she lies flat. I...

Yes Max, we are in contact with the Motor Neurone Disease Society in our state and have a new local representative who visited mum last week. They have been very good in helping set up support services over the past 18 months.

Thank you Nikki.

Hi Tillie, I'm fairly new to the site and still trying to work things out. Can you tell me what PM is ? Mum tried the nasal CPAP and couldn't tolerate it. Even since I started this thread this week, my dad is now having to wheel her around the house in a wheelchair as she is too weak to walk...