Old 09-05-2015, 01:58 PM #1 (permalink)
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Smile Hi there, just been diagnosed

I'm seeing specialist next week for a full diagnosis but I do have als/MND and it's more likely bulbar palsy. A year ago I noticed slurred speech, maybe 2 months later I had severe Choking {laryngospasm} I now have really bad speech, muscles in Upper arms and chest are twitching like f*ck. My breathing is bad when I'm walking but mainly OK when at rest. I have a lot of saliva but I can swallow that OK. Phlegm is a big problem for me, either choking or distorting my speech. I'm due to stop working in a week, so life on benefits from now on.

I've suffered depression for most of my life, but the strange thing is I'm happy now. I'm living each day as best as I can. I'm currently on holiday in lanzarote it's been hard and scary at times but I'm not letting a diagnosis stop me living the best I can. I use humour a lot when people ask what's wrong.

I live in Scotland near Edinburgh. If anyone wants to chat about this feel free xxx
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Old 09-05-2015, 02:36 PM #2 (permalink)
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Default Re: Hi there, just been diagnosed

Welcome Dougie.

Sorry to see you here. There are a lot of good, supportive people here.

Let's hope your specialist finds a non-fatal form of MND.

You said, "the strange thing is I'm happy now. I'm living each day as best as I can." I can understand this perfectly, some MND patients feel exactly the same way. In fact, I think most of us here eventually learn to live each day as best we can.

Enjoy the Canaries.

--Mike
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Old 09-05-2015, 02:38 PM #3 (permalink)
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Default Re: Hi there, just been diagnosed

Imminent Death can be very liberating....................
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Old 09-05-2015, 03:17 PM #4 (permalink)
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Default Re: Hi there, just been diagnosed

^^^^ Very true - and nice to see you're back ^^^^^^^^^^^^
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Old 09-06-2015, 06:26 AM #5 (permalink)
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Default Re: Hi there, just been diagnosed

Quote:
Originally Posted by Atsugi View Post
Welcome Dougie.

Sorry to see you here. There are a lot of good, supportive people here.

Let's hope your specialist finds a non-fatal form of MND.

You said, "the strange thing is I'm happy now. I'm living each day as best as I can." I can understand this perfectly, some MND patients feel exactly the same way. In fact, I think most of us here eventually learn to live each day as best we can.

Enjoy the Canaries.

--Mike
Thanks Mike, I'm doing a lot of research so I can ask the right questions.
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Old 09-06-2015, 07:52 AM #6 (permalink)
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Default Re: Hi there, just been diagnosed

Dogie, welcome. Some of your best answers as you research can be found here, by the people living this.
Big Mark, a big smile from me this morning as I see you back on the forum. Have so missed your irreverence and humor.
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Old 09-07-2015, 10:40 AM #7 (permalink)
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Default Re: Hi there, just been diagnosed

Welcome to the club no one wants to be a member of. We are all here to help you, feel free to ask anything. We are all walking this path.
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Old 09-08-2015, 07:05 AM #8 (permalink)
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Welcome. You are among friends
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Old 09-08-2015, 11:36 AM #9 (permalink)
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Default Re: Hi there, just been diagnosed

Saw specialist today. I have ALS, but I knew that already, They want me to have a feeding tube fitted now, my lung capacity is 90% which is good. Donated blood for further genetic research.
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Old 09-08-2015, 03:47 PM #10 (permalink)
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sorry to be welcoming you Dougie
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Old 09-14-2015, 05:50 AM #11 (permalink)
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Default Re: Hi there, just been diagnosed

Gday dougie.
I'm so sorry for your diagnosis, but very glad you found this site.
I would be lost without 'real' answers to questions I have, and the compassion and caring is amazing.
Thank you for sharing your journey with us.
God bless, Janelle x

PS how scottish is this: my son is Connor Bruce Stuart. I was a McKay, so no chance for the kids to escape it really!
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Old 09-18-2015, 11:36 AM #12 (permalink)
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Default Re: Hi there, just been diagnosed

Wow Dougie! I wish I could take a page from your book, but some of what you are saying resonates with me on those days I grab the bull by the horns.
I just wish you the very best in all outcomes, enjoyable travels and so nice to chat with someone from Scotland( " new Scotland" here- Nova Scotia, Canada).

Your outlook inspires....

Susan
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Old 09-18-2015, 03:13 PM #13 (permalink)
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Default Re: Hi there, just been diagnosed

[
I don't know why but I'm living life while I can. Never feel down at the moment. I'm off out tonight but can't speak which is frustrating. I'm a DJ and I'm using a speech synthesiser on my laptop to introduce things.


QUOTE=Sjm16;355935]Wow Dougie! I wish I could take a page from your book, but some of what you are saying resonates with me on those days I grab the bull by the horns.
I just wish you the very best in all outcomes, enjoyable travels and so nice to chat with someone from Scotland( " new Scotland" here- Nova Scotia, Canada).

Your outlook inspires....

Susan[/QUOTE]
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Old 09-21-2015, 02:09 PM #14 (permalink)
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Default Re: Hi there, just been diagnosed

Dear Dougie,

I just wanted to say Hi, and welcome. The people here are wonderful. I was diagnosed in August 2015 as well. I have ALS with mostly all bulbar symptoms at this point. I could relate to so much of what you said. My voice is mostly gone now, and I have just started learning how to use a tablet to speak for me in an electronic voice. I admire your attitude very much.

Best to you,
Laura
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Old 09-21-2015, 02:48 PM #15 (permalink)
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Default Re: Hi there, just been diagnosed

Hi Laura

I don't know why but my diagnosis isn't bothering me too much, my speech is bad but I can still communicate in short sentences.
Edinburgh University are going to record whats left of my voice, then clean it up so I can use the iPad app prediction to speak.
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