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Old 03-04-2013, 12:26 PM   #1 (permalink)
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Default I'm new and would like to talk to people who understand.

Hi everyone, my name is Anne from Glasgow, Scotland, and have recently been diagnosed with MND/ALS. My emotions are all over the place as I still struggle to come to terms with my diagnosis and would just like to chat to other people who know what I am going through. MND is extremely rare in Scotland, (there are currently less than 400 people in the whole of Scotland with the disease) so I have never met, or even heard about another person that has it. This makes me feel very isolated and that no-one fully understands what I'm going through or how I feel. I have a fantastic support network within family and friends but it's not always easy to talk to them when they can't feel how I feel.

I'd appreciate any thoughts and advice you could give me, or even just a chat.

Many thanks,

Anne.

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Old 03-04-2013, 01:15 PM   #2 (permalink)
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Default Re: I'm new and would like to talk to people who understand.

Gosh Anne

I hate to welcome you to the club. I don't have als but I have a muscle disease and we are all in the same boat. You will find an enormous amount of info here and people who will talk with you. There is fear of the unknown but you have to get the mind set that there is life after diagnosis. Make plans and enjoy time now.

The people here are great, they are living life to the fullest. There are moments of saddness, but we rally round and do what we can. I wish you peace and sending hugs across the pond.
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Old 03-04-2013, 01:53 PM   #3 (permalink)
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Default Re: I'm new and would like to talk to people who understand.

I know the feeling Anne. I was two years without a diagnosis, then another year before I got the right one. I found the forums a year ago and they have been a godsend. Someone finally to talk to and all the different forums to get information from as well. The tips and gadgets are fantastic. So welcome to the gangand explore to your hearts content. As we have fewer days than we were hoping for its important to make the most of them.Keep the cup half full not half empty and enjoy life.
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Old 03-04-2013, 01:59 PM   #4 (permalink)
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Default Re: I'm new and would like to talk to people who understand.

Hi Vicki, thank you so much for your kind words, I have taken some comfort from them. Sorry to hear of your situation, hope you have a good support network of family and friends, Hope to hear from you again soon, love and hugs, Anne xx
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Old 03-04-2013, 02:08 PM   #5 (permalink)
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Default Re: I'm new and would like to talk to people who understand.

A hearty welcome to you Anne, though we are all dreadfully sorry for your reason for having found this forum. Like you, my wife Annie joined this forum after her diagnosis and found in it a community of folks who understand and could relate to the emotional and physical challenges that als presents. It was here that she spent most of her time and she delighted in the friendships she made and the myriad of conversations she participated in, so I think you've made a good choice.

I wish you an overflowing abundance of grace and peace.
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Old 03-04-2013, 02:13 PM   #6 (permalink)
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Default Re: I'm new and would like to talk to people who understand.

Hi Flyby, thanks for replying to me, it's good to know I'm not alone! I'm trying to stay as positive as possible, thank god I have my daughter now living with me, she has been and continues to be amazing, she certainly goes above and beyond hope we talk again, love and hugs, Anne xx
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Old 03-04-2013, 02:23 PM   #7 (permalink)
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Default Re: I'm new and would like to talk to people who understand.

Hi Annies Phil, so sorry for your loss, thanks for taking the time to reply. I am only a learner on the computer so its taking a while to get started! Still trying to come to terms with my diagnosis, good days and bad as you will know, hope to hear from you again, love and hugs, Anne xx
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Old 03-04-2013, 02:29 PM   #8 (permalink)
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Default Re: I'm new and would like to talk to people who understand.

Hi Anne,
Welcome to the forum but so sorry for your need to be here. You will not be alone on this forum because there are alot of us will support you. I'm relatively new so I am not capable of giving much advice yet. But, I was wondering if where you live in they would have any clinical trials you could participate in. They are coming up with alot of new medicine so maybe there is something out there you could try. My dad drinks Boost which has lots of calories and vitamins in it. Maybe, you could try something like that to help maintain weight. Take care, Kim
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Old 03-04-2013, 02:31 PM   #9 (permalink)
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Default Re: I'm new and would like to talk to people who understand.

Yes I have a good network of family and friends. My hubby is my hero. I am glad you have someone there with you. I ahve been living with my illness for close to 6 years so it is no big deal, it is what it is. I learn to adjust and adapt. It is all about having a positive attitude.

Don't get me wrong We all have our pity party now and then but there is more happy than sad. I like contributing to the jokes thread here. I like the what are you reading now thread too. You should check out the come for tea thread where you can talk about whatever you want.

This forum has been a God send for me, I can talk to people who understand the things I am going through without upsetting my family. I hope you become a regular here. Hugs
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Old 03-04-2013, 02:33 PM   #10 (permalink)
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Default Re: I'm new and would like to talk to people who understand.

I don't know if you could tell from my avatar that I look all of my Scots heritage. At 6 feet tall with curly red hair and green eyes there's no doubting where my family came from. That being said, damn sorry you're here. My hands started to go two years ago, I took up the power chair to conserve my energy. I can still speak and swallow, but don't ask me to write you a note. And don't get me started on product packaging! My breathing is just starting to be affected, so know that each one of us is unique. My neurologist told me that once this disease picks a speed it goes on cruise control. I have found these forums to be an emotional lifesaver. I have a loving and supportive husband but he can't possibly imagine how I feel or what I'm going through. And I don't think it would be fair of me to expect him to. So ask away, message away, let it all hang out. We're all in this hot water together.
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Old 03-04-2013, 03:32 PM   #11 (permalink)
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Default Re: I'm new and would like to talk to people who understand.

hi Celtic girl, as the others have said, welcome to our club and sorry that you find yourself here. If you look for the user profile for Maire, I believe she lives in Scotland as well. She just recently lost her husband Clive…

This place is a lifeline to us all, and I've made many great friendships here. There's lots of good information in the older posts so feel free to check through those, or ask us as well. we all come from a different place, and find comfort and friendship here.

So, where are the brownies? Our warrior Princess Di used to bring them... maybe we need to reassign that duty... since Hollister is bringing the hot water, I'll bring the teabags!
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Old 03-04-2013, 03:34 PM   #12 (permalink)
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Default Re: I'm new and would like to talk to people who understand.

whoops, just realized I am not posting on the Come for Tea thread! my apologies, and sending you an invite to join us at tea, where we talk about the trials and tribulations of our days… Hope to see you over there!
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Old 03-04-2013, 04:11 PM   #13 (permalink)
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Default Re: I'm new and would like to talk to people who understand.

Anne, We are here for you and as said above, I guess we are all in the same hot water. This forum has really helped me a lot and I am always able to go back to it for information as new things pop up. My ALS started in my left leg and is slowly moving to the right. I was diagnosed last year in June but was aware of a problem at the end of 2011. I guess I went into shock after they told me because this illness was something I would never have imagined. The courage of the people on this forum has helped me to survive. May it be the same for you. Sherry
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Old 03-05-2013, 02:30 PM   #14 (permalink)
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Default Re: I'm new and would like to talk to people who understand.

Welcome, Anne.

I'm sorry about the rollercoaster ride of emotions you are going through. My diagnosis is recent enough that all of that is still fresh in my memory. But for me, 4 months after diagnosis, the emotional turmoil has settled down a lot. I can't promise you'll get there, but I thought it might help you to know it's possible to eventually reach a place where the emotions aren't so raw or volatile.

Bob
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Old 03-05-2013, 03:57 PM   #15 (permalink)
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Default Re: I'm new and would like to talk to people who understand.

Welcome, Anne!
This place has been a lifeline for me. Hope you'll find lots of support here too.

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