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slang king
26th October 2011, 11:39
Hello all
I've just joined the forum as I have MND. I was diagnosed a couple of months ago and I've had a bit of nightmare ever since trying to deal with it. However, I know I'm probably not alone in that! I think I'm starting to deal with things now and as I'm relatively young I hope this pernicious disease doesn't get me too soon.

angnmick
26th October 2011, 12:30
Hi Slang King
Welcome to the family so to speak, and give your self time to accept. There seems to be great work being done in trials etc so being ever hopeful is also a good way to go too. xx Ang

Robyn Copley-Hirst
26th October 2011, 18:24
Hi Slang King,

You'll find plenty of people here who can empathise with what you're going through, feel free to ask anything you like here and you'll more than likely find someone who has help or advice for you.

Best Regards,

Robyn

elle
26th October 2011, 21:41
Hi Slang King,

Sorry to hear you have MND join the club/forum it takes a while to get your head round, also very mixed emotions, but like us all it is a case
of coping best we can but feel free to ask as many questions you need to.

Take Care x elle x :)

slang king
26th October 2011, 23:56
Hi Ang
Thanks very much for the welcome. You've used three interesting words in your comments: "family", "accept" and "hopeful". I'll try and remember those! Thanks again.

slang king
26th October 2011, 23:59
Hi Robyn
Thanks a lot. It's a great pity there are so many people who can empathise with me but it is also very reassuring and comforting to know I'm not alone. People certainly seem kind and ready to advise so I'm sure I'll gain plenty from the forum.

slang king
27th October 2011, 00:10
Elle
Thanks for your reply. Yes, the "coping" is a tough one, but you all do it so I suppose I can too. You're certainly right to point out the mixed emotions. I think the last time I cried was around 1983 but since I was diagnosed I think I've made up for the last twenty eight years! I wasn't prepared for the emotions of friends and family and that really hit me hard. I'm trying to be as positive now as I can be so thanks for the message.

carolmike25
30th October 2011, 16:37
Hi Slang King
I've only just joined - I've wanted to talk but the time just never seemed to be right.
My wonderful wife Carol was diagnosed back in July 2009 so we've got 2 and 1/2 years behind us and there has been a lot going on.
I recommend you keep all your letters and start a diary if that will help you clear your mind - and find someone who'll listen to you - we all need that believe me.
I wrote lots down but didn't do anything with it until the latest thumbprint - Deirdre's article in there inspired me to start a blog so that's what I've done and I'm frantically catching up with all that's happened to us - it really brings everything back.
I decided it doesn't need to be for anyone but me, although Carol has read it and it's now out with our friends - so maybe they'll realise what Carol's actually been going through all this time.
Stay positive - that's the only real advice I can give - we knew what lay ahead and we had a mad year across 2009/10 doing everything we could while Carol was still able!!
Things have progressed for us - but Carol's smile can still light up a room in an instant.
All the best
Mike

slang king
31st October 2011, 12:19
Hi Mike
Thanks very much for the message. Your advice has really helped. I have been stuck in a period of denial and everything I read about MND upsets me so I have not wanted to recall or record anything that reminds me that I have the disease. I know this is ridiculous as I am reminded every time I move let alone every time I read something. I'm going to take your advice and start recording events and share this with my friends and family. Your positivity and the pleasure you get from Carol's smile is enough motivation for me. Thanks again.
Take care.
Slang king

carolmike25
31st October 2011, 21:54
You're very welcome Slang King - I know how hard it is to take advice when it's your life being talked about.
We struggled early on and denial was our standard default for a long time - even when Carol was experiencing changes in her condition - so don't be too hard on yourself about that.
I've already seen there are many different people on here with their own stories and they're all useful to take strength from.
I'm no expert but we've lived with this for a while now and keeping ahead of the disease was the best piece of advice anyone ever gave us. Our local MNDA co-ordinator told us to always plan ahead with regard to what support we'd need - so when we did eventually need it there were no delays.
That went for equipment, physio, speech therapy and care packages - get your GP and specialist involved to start the ball rolling early and don't be afraid to ask! Your local MNDA co-ordinator or support team can also help and advise.
There are times when you need to push - don't be afraid to do that - unfortunately time is not on our side so waiting is not an option!
Keep smiling - cheers.
Mike

sionz
1st November 2011, 16:48
Hi slang king i was diagnosed in october 2007 and started having symptoms in 2003 aged 31 and i was pregnant at the time with my 3 child. I was in denial for a long time ! It's been a slow progression for me , i get my ups and downs and get very fustrated at times but i think and hope by carrying on and being positive keeps this disease stable ! i'm allso on facebook ! http://facebook.com/sioned.r.jones

Jeannie
2nd November 2011, 13:29
Welcome slang king (opps nearly wrote slag king lol) :)

slang king
2nd November 2011, 15:59
Hi Jeannie
Thanks for making me chuckle out loud.That certainly gave me the laugh of the day.

slang king
2nd November 2011, 16:16
Hi sionz
That seems slow but then I don't really know many people with the disease (strangely enough!) so my experience is limited. I was diagnosed a week before my 46th birthday. What a lovely present that was. I've had symptoms for about a year in my finger and now my hand. The rest of me seems strong and fine. Oh, apart from the slipped disc in my neck and the torn cartilage in my knee! I find it slightly amusing that I've been fairly athletic and fit for most of my life and now I seem to be falling apart. I'm going to do my best about being positive although that is a slightly different approach for me. If I can do it I suppose that's a positive thing about the disease for me. Seems a bit warped to say that but anything helps, I guess. Thanks again

sionz
2nd November 2011, 16:48
I do'nt know of anyone else with this disease in my area but i've made many friends through www.patientslikeme.com/als/community and finding them on facebook !! I do'nt feel alone anymore by talking to people with the same condition. Any feelings you have are normal everybody deals differently xx

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