Recent content by rocmg

i got rid of all the ALS equipment the day after mum died. I wanted to forget ALS and just remember mum. The nurses were good and came for it the day after her funeral. We had the inter-floor lift pulled out the following wednesday. the house was so quiet; no one expected, no caregivers to come...

Thank you again for your reply - and I get what you're saying. I am just having such a hard time 'switching off'. I do think that I am struggling to find the relevance or importance of my work and think perhaps it is time for a change - that could be a big part of the problem, really. I am...

I feel like I'm just going through the motions too most days. But I am thankful that my mum and dad worked hard and that I don't have any financial worries, I own a house that will always be mine with no mortgage or much debt to speak of. I am thankful for my horses (I have 4) - and especially...

Hi Laurie - thanks for taking the time to reply to me. If you have suffered a similar loss in a similar time frame and still keep up to date with ALS forums, I suspect you will understand what I mean if I describe the anxiety. I think for so long ALS was my life - 5 years- as well as the...

... and I still miss my mum everyday. I still cry when I think of what she went through. I still feel so sad that there's still no cure. Just this week I had to take time off work as I fell back into a deep place of anxiety. I just miss her so much and I am considering returning to...

My darling mum lost the battle with als/MND today, almost 5 years to the day since her diagnosis. She was 55 years old. I still feel that the suffering and pain that she went through was not the full story... So much she held apart from us, to protect us, she was still a mother to the very end...

Hullo graham… thank you for your very passionate and lovely message. To be honest, I thought this journey would get easier… for me as a CALS it has gotten harder. I said I would fight for her, but I realise these last few months I have been fighting against her and we’re losing the battle and...

hello vickim... i think i will go and speak to my doctor about getting some antidepressants and sedatives if i am to endure this next part, these next months. i feel she is done with life. it holds nothing else for her. i always knew she was terminally ill, but i never thought of her being dead...

you look beautiful danijela!

hi all. it has been a while since I posted. Just to recap for anyone I haven't met before, Mum was diagnosed Feb 2009. She went rapidly downhill in her first year. 14 months after diagnosis, my brother took his own life. For about 2 years after that we were all just existing, not living. Me, my...

Angela, I totally empathise with you. I was in your position 3.5 years ago when my mum was diagnosed with ALS. we got a second opinion too, from an ALS specialist. my mum is still with me, although her life is very much shrunk from what it used to be. she has many duvet days, but we are still...

Can I just say I had the exact same experience with the exact same neurologist. Basically for PALS in Ireland and seemingly Northern Ireland venting is not an option. Diverts funds from elsewhere -- probably going into obesity research and heroine rehabilitation programs. I'm not saying these...

Jerry -- I second whoever suggested just using a commode chair as opposed to the flip down shower seat. My PALS has used both and to be honest, transfers when wet and slippery are very dangerous for both you and your caregiver. I would avoid them at all costs! The commode chair has been such a...