Old 09-17-2015, 04:18 AM #1 (permalink)
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Default Hoping to share now...

Hello,

I was hoping to share more of my story with you now. My user name is fionae and my name is Laura. I was diagnosed with ALS on August 20, 2015. I overwhelmingly have symptoms of the bulbar type.

I know that you're aware of what kind of things go along with bulbar symptoms. I basically have been dealing with just about all of them. Recently I have been afraid because I have felt that Im starting to experience the beginnings of some symptoms in my arms and legs as well.

Yesterday, I received a tablet as a gift, and I started to learn just the beginning steps of using a tablet to "speak" for me with an artificial voice. My speaking is not understood by strangers now, for the most part. My close friends and loved ones can usually understand me, but with tremendous effort on both of our parts.

I first noticed signs that perhaps something wasn't right in October 2014. I realized that I was (off and on) having a bit of difficulty speaking and enunciating clearly. (Much later, as I reflected back to that time, and after having learned more, I felt that most likely I had had traces of the beginnings of symptoms in as early as August, if not perhaps as early as July, 2014.)

I first joined this forum at the end of May 2015. I selected "Other" as my Forum Interest, because at that time the doctors still didn't know what was wrong with me. In fact, at the time that I joined, the latest that I had been told was that there was "no evidence" of ALS.

That was one of the major reasons I joined at that time. Despite what the medical profession had said, I was still very afraid that I had ALS. And my first post at that time, in the 'Is This ALS?' section, was regarding that particular situation.

Laurie responded to my posted question. She explained things that I didn't understand about this type of illness, she educated me, she provided me with exceedingly valuable information that I couldn't have done without. She cared. Nikki responded as well, very soon after. She cared. They were both such a tremendous help to me, and I am so deeply grateful to them both. I will never forget all they did to help me.

I only posted with the Forum at that time, I think, for less than two weeks.

I returned to the Forum a few days ago. When I returned, I needed to change my Forum Interest to "I have been diagnosed...".

A few things to know about me: I know nothing about how forums work because I've never been in one until this one; I know nothing about how computers work and am very unsavvy computer-wise having only ever used my cell phone computer; I know very little about how to cope with this devastating disease, and I am so frightened.

I guess we all must be frightened.

I appreciate so much all the caring and support that has been sent my way.

Thank you all,
Laura

(When I first posted back then several months ago, I knew nothing about how or what to post in forums (I still don't really know); what was appropriate information, and the like. For general purposes I said I was in my early 60s...I actually am 59 years old at this time.)
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Old 09-17-2015, 07:50 AM #2 (permalink)
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Default Re: Hoping to share now...

Laura, thank you for telling us more about yourself. Don't worry about your lack of experience on forums; this was the first forum I ever participated in also. We are a family here, and if you ever do need help with the forum, just like help with ALS, you'll receive it.

I am always impressed with how some of our folks can respond over and over to people asking about ALS, and they are always compassionate and full of information. Laurie and Nikki are very special people, aren't they?

Yes, we are all frightened. This is a nasty roller coaster, and I often wonder why the most wonderful people contract the worst disease. I'm glad you came back once you received your diagnosis.
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Old 09-17-2015, 08:39 AM #3 (permalink)
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Default Re: Hoping to share now...

I want to thank you for your warm response and your reassurance. Your message was very calming to me. I have appreciated your other kind messages on my other thread, too. You have helped me. And yes, Laurie and Nikki are so very special. Thank you again. Best wishes to you and yours.
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Old 09-17-2015, 08:41 AM #4 (permalink)
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Default Re: Hoping to share now...

hey laura, i also didn't and still don't know all protocols regarding forums and what not so your not alone with that or with this nightmare so keep on posting. love ya chally and WELCOME!
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Old 09-17-2015, 08:50 AM #5 (permalink)
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Default Re: Hoping to share now...

Laura, welcome to the club no one wants to be a member of. You are never alone, we are all here for you. I have had ALS seven years, but can still talk, breathe, and swallow. I am distal onset, slow progressor. I am in a power chair and my hands are effectively useless. I'm dictating this to a software program. Feel free to ask us anything. I didn't go to a psychiatrist after first diagnosis because I couldn't figure out what I was so afraid of. She really helped me. Good luck!
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Old 09-17-2015, 09:02 AM #6 (permalink)
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Default Re: Hoping to share now...

Thank you Chally for your friendly and reassuring greeting. You have helped me to feel more comfortable being here. I hope you will have a good day today!
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Old 09-17-2015, 09:32 AM #7 (permalink)
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Default Re: Hoping to share now...

Dear Hollister,

Thank you so much for your welcoming words, and your words of comfort. And thank you for sharing some of your personal story with me. I also appreciate your suggestion. I hope today will bring you happiness.

Sincerely,
Laura
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Old 09-17-2015, 11:44 AM #8 (permalink)
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Default Re: Hoping to share now...

Laura, I'm glad you are participating in the forum. Having ALS can be a lonely walk, because the disease is quite rare and it's difficult to find anyone who has it. Yet here, we are all on the same journey, and together we support each other and learn from each other. The forum has been a lifeline for me in that regard. You will find, as I did, that the more you're on the forum, the more you will know your way around and how to post, etc. Nikki has been helpful to me in figuring things out. Just send her a message if you need help by clicking on her name and following the prompts. Yes, this disease is frightening. I was stricken with panic when I first was diagnosed. It helped to connect with others here on the forum going through the same thing. The information here provided me with ways to deal with situations, and I felt empowered. It's all so daunting at first. I am an anxious person by nature, and if would have known that within months of diagnosis I would be wheelchair bound, I would have fainted from fright! Not at all courageous by nature, I have found that things develop gradually and with each development there is ample time and resources to manage it. No matter what, there are always things to be enjoyed in life, and the more I lose of myself, strangely, the more I have grown in appreciation of the blessings of life, it seems. (Btw, we're the same age...) Peace be with you.
- Charlene
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Old 09-17-2015, 02:49 PM #9 (permalink)
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Default Re: Hoping to share now...

Sorry to be offering you a warm welcome here Laura. No one wants to be here and yet it's the best place to be. Thanks for telling us a bit more about yourself.

You will work out how to use all the features here fine with time. The main thing is you've worked out how to post and reply - you can get by without knowing more than that!
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Old 09-17-2015, 03:40 PM #10 (permalink)
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Hi Laura,

Feel free to ask anything, and I mean anything, and you'll receive tons of help.

Take care,
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Old 09-17-2015, 06:06 PM #11 (permalink)
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Default Re: Hoping to share now...

Hi Laurie,

My mom is bulbar onset as well, and 69 years old. Good for you getting going on alternate communication! Being on this forum puts you in touch with some of the kindest, smartest, and most resourceful pals and caregivers. You will feel empowered to manage what pops up and better anticipate what's next. And on the days you're really scared, mad, tired, or frustrated you can always vent here too.

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Old 09-18-2015, 10:30 AM #12 (permalink)
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Default Re: Hoping to share now...

Hi LaurA ( Fionae) again,

So glad to read more about you. As very newly diagnosed, too, I wish you just the best.

It takes guts to reach out , but also a necessary step, to me anyway. So far what I read from others on this road longer is amazing, kind, so informative, and likely the type of resource we could find nowhere else.

Susan ( sjm16)
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Old 09-18-2015, 10:16 PM #13 (permalink)
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Default Re: Hoping to share now...

Thank you very much, all of you. All of your responses truly mean so much to me. I want to get back to you in a better way than this; for now this is all I'm really able to do. The last 24 To 36 hours have been pretty tough for me. But Thank You so much!
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Old 09-20-2015, 03:26 AM #14 (permalink)
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Default Re: Hoping to share now...

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.
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Old 09-20-2015, 11:00 AM #15 (permalink)
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Default Re: Hoping to share now...

I'm here Laura, how can I comfort you?
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