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Kate
14th April 2012, 08:27
Hi friends

Well it's been nearly 3 weeks since my mum was diagnosed with ALS and she has now finally received her appointment with the specialist & the MDT team, I say finally because she was given this devastating diagnosis along with a leaflet to read and waved off so of course the 1st thing she noticed in the leaflet was the bit about life expectancy!. It's been a tough few weeks, sleep is difficult & my stomach feels like its in my throat all the time but I can live with it as long as mum is ok. How did you all feel following your similar appointments? I am very worried about what she may be told about the future as I fear she may give up. Gonna have to also look at rehousing as my dad is also ill and facilities would be difficult in their current house but they own their own home so probably will be a private rental.
Lots of love
Kate xxx

pete
14th April 2012, 09:27
Hi Kate,

Well it seems a very different story to who you get and where you live, many seem to get lots of information regarding facts and figures given, I had a very short time with my Neurologist who hung her head and explained it was feared i had Bulbar form and the outlook was not good, but i was refered to the QE hospital who to be honest did not go into all the very negative aspects of MND, they did explain i wouldnt get better ,but admitted only time would tell, Your progress has as much to do with your unique body as much as how you fight it , many want to know all the details up front , I wasnt one of those , Listening to my very kind and very experienced Proffesor , she was the single ray of hope , for me she said , that she had no idea how long i had left it depended on me and the disease , i had , Much like you we came out a bit shocked but also bemused if thats the right word , So i wish you all the luck in the world , and hope you get a good team , I do know from experience myself , You can make the best of it, or sit back and do little and see how long it takes ,WE chose the first and I can still get about and eat and just about manage to say single words ,No its not ideal but its a lot better than being told your not going to see another christmas that was a year back so shows how much some know ? ,Kate hang in there and try to live as near normal life as you can dont let this condition rule you life ,

Best wishes

pete

Kate
14th April 2012, 10:56
Thank you Pete, I am so glad I joined this forum and get to speak to people like yourself.
All my best wishes to you & yours
Kate

magic
14th April 2012, 14:28
Kate, I think that you can advise the neurologist of where your Mum is in terms of understanding her condition and. Influence show much she is told. I do this with all he professionals we have met to date.mPeter, my husband was diagnosed a few days before Christmas.a and is stillinawarevof the long term implications. he is able to be aware of what today and tomorrow may holdAshe appreciates we have to be one step ahead. surveyors will be visitingour home soon to adise on possible adaptations.
We were very distressed when we heard the diagnosis and now, four months later, are still learning how best to cope. I hope you have familynandfriend support because both parents needing a lot of attention is too much for one.
Do consider ringing MNDconnect. I did once and received a lot support. I wish you all the strength and spirit you need to cope with themes ahead.
Maic

Kate
14th April 2012, 18:57
Thank you magic that sounds like very good advice and I will certainly take that on board this week when we go for the appointment.
Lots of love & my very best wishes to you & yours
Kate xxx

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