fionae
Distinguished member
- Joined
- May 30, 2015
- Messages
- 240
- Reason
- PALS
- Diagnosis
- 08/2015
- Country
- US
- State
- CA
- City
- San Diego
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.)
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.)