• Memoriam wall
    • We've created a memoriam wall to remember our friends
    • If you know someone that battled ALS, please add them here
Status
Not open for further replies.

scotslassie

Distinguished member
Joined
Mar 7, 2012
Messages
178
Country
EU
State
***
City
***
Hello everybody. I tried introducing myself a wee while ago but I must have pressed the wrong button (not very great at this). I wish I had found this forum months ago. I would have found lots of answers to my questions here. Sadly, my lovely aunt has recently passed away. She was diagnosed in May 2011. As there were not that many years between us she was more like a sister to me. We expected to be told that she had Myotonic Dystrophy as this is in our family so her diagnosis came as a bolt from the blue. We are not strangers to this cruel disease although my aunt was the first blood relative. It has come into our presence in the past and just a few weeks ago it raised its ugly head again when a neighbour was diagnosed with Bulbar Onset. A lovely lady aged just 40.
We are raising funds by having sponsored bungee jumps, bicycle runs and a fund raising night. I hope it's ok if I stay here on this forum to gather information and advice. I've read a lot of posts and you all seem like a great bunch of people. Thanks x
 
Re: Can I try Again?

Welcome, lass. You seem to be a very caring person! I'm sorry about your aunt. What a lovely friend you must be to your neighbor!
 
Re: Can I try Again?

Thank you Brooksea. I think I'll find lots of info here. (Once I find my way about).
 
Re: Can I try Again?

scotslassie, so sorry to hear about your aunt. Welcome to the forum, feel free to ask questions and join in.
 
Re: Can I try Again?

Welcome Scotslassie, I'm sorry for your recent loss. Sounds like your aunt was in good hands with a caring family member like you. It is inspiring to see how you are helping your neighbor! Good luck with your fund raising.

God bless you.
 
Re: Can I try Again?

Scotslassie,

I'm so sorry to hear of your aunts passing. And I too, think you are a wonderful neighbor and friend to help someone else with this . I look forward to hearing from you again.
 
Re: Can I try Again?

Lass, so so very sorry about your auntie, My prayers for confort for you and your family.
 
Re: Can I try Again?

welcome. wish i could contribute a bungee jump! didn't get to cross that off the list
 
Re: Can I try Again?

Welcome, being an advocate for ALS is a great thing from great people. Thank you and good luck
 
Re: Can I try Again?

Welcome to our family Lass! Ask anything. Someone here will give you good and accurate direction. You are a good and loving friend. As our New Zealand friends say, Good On Ya!
 
Re: Can I try Again?

Thank you all very much for your welcome. I'm looking forward to chatting to you all and hopefully passing on your advice and experiences. My own experiences when my aunt was dealing with this left me, quite often, saddened that so many health workers here had very little knowledge of this disease. We only have 2 MND nurses covering the whole of the west of Scotland and unfortunately, both of them were off work at the same time when my aunt (and the family) needed them most. This was through no fault of their own - illness and bereavement- and when they were available, they were excellent. I have spoken to the Exec Director of MND Scotland and he agreed that more specialist nurses are required and that we, as a family had been let down. To be fair, this is not their fault either. MNDA are unable to discuss medical issues. The last I heard, a meeting was arranged to discuss this. I dont want any other patient or family member being left without support the way we were. My actual words to the E.D. were "we were cast adrift" and to give him his due, he agreed, and promised to do something about it. Just because my aunt has now passed, doesn't mean I can put this behind me and carry on. I fought for my aunt whilst she was ill and I will continue to do so for as long as this cruel disease exists amongst us. The NHS service here is excellent, the staff are well trained, kind and caring. My aunt had a lovely room in a purpose built unit. Everything was supplied for her, Consultants, medication (Riluzole, sedatives, morphine), physiotherapists, speech therapists, everything right down to concerts and art classes. All free. Not one complaint there. We were just very unfortunate that both MND nurses were off at the same time. I feel I need to raise awareness of this situation in the hope that future patients get the 24 hour support they need and deserve.
I am no expert in MND but it has glanced off me no less than 6 times through friends, family and extended family. This is not a rare disease and the sooner people wake up to this fact the better. I have no great medical knowledge of MND (does anyone?) but I have spent 17 years in Clinical Pathology.
I only came on to say thanks................got a wee bit carried away there! Love to all. x
 
Re: Can I try Again?

Thank you Ms. Pie. The last thing my aunt said to me was "God bless you". I've heard this before (especially after a sneeze!) but this was the first time I actually felt it. All the very best to you.
 
Re: Can I try Again?

have posted a reply to everyone.........rambled on a bit, so it has to be approved I think. In case they ban it - Thanks everyone for your welcome. x
 
Re: Can I try Again?

Welcome to the forums. It sounds like you are a very caring group. I hope you'll find much info and support here.
 
Re: Can I try Again?

Thanks Deb, "Alls well that ends ALS", I couldn't agree more,
 
Status
Not open for further replies.
Back
Top