Old 09-20-2015, 12:48 PM #16 (permalink)
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Default Re: Hoping to share now...

Dear Laura,
My heart goes out to you, as you try to deal with the diagnosis without a voice, which can be isolating. Many of us understand what you are going through, as many of us have lost our voices or are in the process of doing so. But, if you can, try not to think of it too much as "losing your voice." Your voice is the expression of your thoughts to others, and you still have that, just in a different way. You are able to express yourself very well using your computer. At this dark time in your life, reach out to others through your computer. Write emails, texts, FB messages to those you know. What I have found in doing this early on is an outpouring of support, often from people I hardly knew. Let people know how much you are struggling. Do you belong to a church? Or do you want to be part of a church family? Seek out a priest or a pastor through email for spiritual support, if this is something you are drawn to. Faith, the Bible and church are wonderful resources of support. Know that you may feel alone, but you are not. All of us here know how devastating and overwhelming an ALS diagnosis is. Some have faced this diagnosis alone without a spouse or family. This makes it more challenging, but not impossible. The waves of grief may overwhelm you now, but you can rise above them. You will get through this. What you're going through is normal. See your doctor for some help with anti-depressants if you haven't already. Most of us are on them. Reach out for help from your ALS Society. My Society offers free counselling. Laura, I wish I could go over to your house and spend time with you today. The miles separate us. I care. We care. My thoughts and prayers are with you. Keep posting here, and re-reading our posts to you. Get out and do things if you can. Go to movies. An art gallery. A concert. An ALS support group. Distractions can help keep despair at bay.
- Charlene
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Old 09-20-2015, 05:23 PM #17 (permalink)
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Default Re: Hoping to share now...

Laura,

I would not worry about the Forum rules. Life is to short for that. I just joined a few days ago and everyone including yourself seems very genuine and willing to help out.

Hang in there.

Charlie
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Old 09-20-2015, 09:01 PM #18 (permalink)
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Default Re: Hoping to share now...

Thank you Charlie so ver much. I just now saw your message to me. I ended up sleeping all day because I cdnt cope, and just finally forced myself to get up a little bit ago. I know that sleeping away the time we do have isn't healthy for a lot of different reasons. I know that. I think that where I am mentally and emotionally rt now, it is one of the few things I lean on to cope. Although lately the ramifications of this disease are entering my dreams even..the sleep that had helped to give me a respite in the past.

I am so sorry that you have this disease too.

Thank you again.
I am thinking about you and your loved ones.
Laura.
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Old 09-20-2015, 09:55 PM #19 (permalink)
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Default Re: Hoping to share now...

Laura, we are here and can hear you. Share what you need to share and the wonderful people here will be here for you. if you can't type or reply just know that you are in our thoughts and right this very minute there are people who understand and feel your grief. hugs, hugs, and more hugs.
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Old 09-20-2015, 10:00 PM #20 (permalink)
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Default Re: Hoping to share now...

Dear Charlene
I had just written a message to you just now but when I tried to post it to you it somehow disappeared. I don't know what happened, I just feel so unfamiliar with computers and how to post on forums and everything.

Thank you so much for reaching out to me at this time of despair and feeling so alone, I just saw your message to me a little while ago for I ended up falling asleep and sleeping all day, after not having bn able to sleep last night,. Your warm and caring words have continually meant a lot to me, as you have sent messages several times to me,. And I have already in the past days been rereading them over and over again. You have such a generous spirit.

I am divorced (many years ago). I do have a very wonderful son from that long marriage of many years. I am so grateful for my son.

I'm sorry I am beginning to feel that I'm not thinking clearly. I want to thank you for writing to help me. It means so much to me. I am so sorry that you have this disease, Charlene. Thank you so for your help. Thank you. Sincerely Laura.
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Old 09-20-2015, 10:18 PM #21 (permalink)
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Default Re: Hoping to share now...

Dear Audrey,
thank you so very very much for responding.
I didn't know if there was anyone our there who could see me. You saw me. Thank you thank you. I only saw your letter to me a short while ago for I ended up falling asleep and sleeping all day after having bn up most of the night. I can't thank you enough for being there. I want to write more to you soon. My head has been starting to hurt a lot. But I have tears in my eyes for your caring and your coming to help me.

I know it's getting late there. I hope you have had a peaceful, lovely day today, and that you will tomorrow as well. I am so sorry you have this disease, Audrey.

Thank you.
Laura .
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Old 09-20-2015, 10:39 PM #22 (permalink)
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Default Re: Hoping to share now...

Dear ScaredWife, thank you. Thank you so much. I will always keep rereading your message to me. I am so sorry for the pain you and your husband are going through. It is all so unbearable. I can't stand that this unbearable pain is happening to everyone else here too. It makes me cry. Thank you for your help. Dearest Lord please help all of us.
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Old 09-20-2015, 10:46 PM #23 (permalink)
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Default Re: Hoping to share now...

Hi Laura....don't worry about responding. I just wanted you to know that people you might never meet care about you. It is a scary disease and knowledge helps make it a little better. Keep reading the boards and asking questions when you need to. The time right after the diagnosis is the hardest time...you're still in shock...be gentle to yourself. Sleep if you need to and eat what you like if you can. God bless us all!
Audrey
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Old 09-20-2015, 11:14 PM #24 (permalink)
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Thank you so much, Audrey. Sincerely.
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Old 09-21-2015, 07:26 PM #25 (permalink)
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Default Re: Hoping to share now...

Quote:
Originally Posted by fionae View Post
Is there anyone out there who might be able to post to me? I am in a really bad way and am really having problems coping with this diagnosis. I am barely holding together I'm in such emotional distress about all of this. I feel so alone. I don't know what to do. I'm alone and I don't have a voice to speak with anymore.
Hi laura
You can chat to me anytime, time difference is six hours
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Old 09-21-2015, 10:24 PM #26 (permalink)
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Dougie, thank you so much. It means an awful lot to me. Thank you. Laura.
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Old 09-29-2015, 11:15 AM #27 (permalink)
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Default Re: Hoping to share now...

Hi Laura. My heart goes out to you. The place you find yourself in is not a great one, but there is always love, compassion, advice and support here.
We cry, laugh, joke and vent together. Sometimes all at the same time.
Thank you for sharing your journey with us.
God bless, Janelle x
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Old 10-02-2015, 04:28 AM #28 (permalink)
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Default Re: Hoping to share now...

Dear Janelle,
Thank you for your message. I know you have written to me before, and it means a lot to me. Thank you for being there. I am terribly sorry that you have the diagnosis of this horrible disease as well. Bless YOU.
Sincerely, Laura.
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