My first thread in PALS...

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fionae

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

I have been in the Newly Diagnosed section for some time now, and this is my first thread in PALS. Im not sure how to get my two threads in Newly Diagnosed "removed"...I feel they're rather outdated, and am concerned for the valuable space they are taking up for those people who are newer there.

I did try to wrap them each up with a closing thank you. And I do so appreciate everyone's kind responses to me on those two threads under Newly Diagnosed.

Sorry for the ramble. I don't have anything concrete to say here right now, but just wanted to get started here in PALS. Thanx, and Best to All, Laura.
 
You could simply close them as the original poster you can do that using thread tools. No need to remove them. I will close them for you though
 
Thank you, Nikki, as always for your kindness and invaluable help. Thanx! ☺️
 
Laura, I can so tell you are a caring and compassionate lady. I'm so sorry you are here.
PALS...it's so not fair.
We are all with you on the journey.
God bless, Janelle x

PS. I have just been diagnosed with PLS. J xx
 
Thank you, Janelle. And thank you for writing. You have written to me before, and it is so appreciated. I am sorry as well that YOU are here. I have seen your posts frequently around the forums, and I want to say that I feel that you make a big difference in people's lives. Thank you for your caring. Laura.

ps...I am on the West Coast of the U.S. There is many a night when I just cannot sleep, and for me, with my time zone, the hours between 11pm and 5am can be the hardest. I live alone, I wouldn't be contacting my friends or family at this time, and when I come in here to check around the forums, very few people from any region are on here.

I was so happy to see you here posting at this time today. I had another of those sleepless nights, and your writing meant a lot to me. I was wondering, what time would it work out to be your time for where you are in Australia, when you wrote me? ☺️
 
Laura, the time on my iPad when you wrote that last post was 7.55pm here. My previous post to you was 7.37pm.

I was in Vermont in my early 20s for a few months (April/may) and it was 12 hours difference when I rang my parents.

We are +8 GMT

Hope this helps. I check in regularly, so it should work well if you aren't sleeping.

thank you so much for your kind words. All I have really to give is words...but it makes my heart very glad that I am able to bring a ray of sunshine to someone's day, albeit briefly.

I had minor surgery on my face today, a big 'thing' near my mouth was cut off. Because of my thalamus issue (unrelated to PLS) the local anesthetic really has messed me around. I'm sure I will be better tomorrow!

God bless, Janelle x
 
Janelle, thank you for the info you provided. It is wonderful to know that you will be here sometimes, that late at night my time. You said, "All I have really to give is words". In all of your posting, the words I've seen you make a gift of are beautiful, meaningful, and caring. I think they are a very special gift! I hope you are feeling better from your surgery. Take care. Laura.
 
Hello to Everyone.

This may be a redundant question that has already been talked about over and over in the past. (I am not yet sure how to research through all of the threads.) I am sorry if it is something that has come up many times before.

It sometimes seems that many of the people who have been diagnosed with ALS quite often had had a traumatic injury, surgery, and/or long periods of intense stress (caused by any number of things, but so sadly, for example, intense stress caused by the death of a loved one), prior to, close to, or even during the time they first began to notice the symptoms which were later to lead to a diagnosis of ALS.

I know that this is true in my case.

I respectfully ask if there are others who feel this is true for them as well? I do not mean to cause anyone pain. If no one is up to answering, I understand completely.

Thank you sincerely,
Laura.
 
Hello to Everyone.

This may be a redundant question that has already been talked about over and over in the past. (I am not yet sure how to research through all of the threads.) I am sorry if it is something that has come up many times before.

It sometimes seems that many of the people who have been diagnosed with ALS quite often had had a traumatic injury, surgery, and/or long periods of intense stress (caused by any number of things, but so sadly, for example, intense stress caused by the death of a loved one), prior to, close to, or even during the time they first began to notice the symptoms which were later to lead to a diagnosis of ALS.

I know that this is true in my case.

I respectfully ask if there are others who feel this is true for them as well? I do not mean to cause anyone pain. If no one is up to answering, I understand completely.

Thank you sincerely,
Laura.
 
Hard to tell Laura, because I thrive on stress. I knew my mother was dying and well I miss her I made sure it wasn't painful or awful. My father drank himself to death 10 years ago. I did divorce my husband 23 years but that was my choice. I've had some surgeries around the diagnosis but they were all necessary. I swam competitive butterfly and the bone spurs on my neck were dreadful. I was born in the spinal defect which was fixed by a lumbar fusion. My career was in the medical industry, so I take quite a different view of surgery than most people. My first symptom was a week dominant hand and severe muscle cramps in my legs. I'm not sure any of this contributed to my ALS. We did a genetic test and I am C9 O RF 72 positive, the first in my family. I blame my Viking ancestors. Glad to have you here. I did go to a counselor right after diagnosis to help me determine what was making me so concerned. We broken down and the things I can control and things I can't control. I've adapted as much is possible. After seven years, still talking, I eating, and breathing. I am dictating this to a software program. Good luck! Were all on the ship together.
Hollister
 
I think it is common at the beginning to look for explanations Laura. Was it stress, exercise, where I lived, my occupation? Researchers look at those things too. For the non genetic folks there are definite links to military services smoking and almost certainly professional sports. There are pockets of Increased ALS. There was one near me in Massachusetts. Those affected blamed toxic factory waste and I think it is generally accepted as likely.
Like Hollister I am C9 and one theory says it was one -energetic- Viking who raped and pillaged his way around Europe that spread the genetic defect. I used to wish he stayed home but then where would Hollister and I be?
 
Dear Hollister,

Thank you so much for your reply. I am so sorry for all of the things you have been through in your life.

It was very thoughtful for you to take the time and the energy to write me. Thank you for your kindness. You have written to me before and have always been very caring.

God Bless You Always, Hollister.

Truly,
Laura.
 
Dear Nikki,

I want to, yet once again, thank you for sharing your insight with me. Thank you for your patience with me, and for your gift to me of being understanding.

I thank you always. I wish you the best always.

God Bless You,
Laura.
 
Dear Everyone,

I would like to "withdraw" the question I had just asked.

God Bless You All,
Most sincerely,
Laura.
 
Hey laura
I totally get why you want to know what's causing this.
Several doctors (6 to be precise. ..wow I'm a hypochondriac! !) have all assured me that this was nothing I could have done to myself.
Even after all this time I still wonder...at times.
Mostly I keep that thought at the back of my mind.
Let me tell you something my gorgeous 11 year old Connor said:

Today is the best I'm going to be, so I'm going to make the most of it.

How awesome is that? I guess what I'm trying to say is don't think about yesterday, what you could have done differently. Concentrate on today, and choices you make from here on out.

The one thing I think everyone has in common on this forum, is just how awesome we all are!

Enjoy today Laura.
God bless you dear lady
Janelle xx
 
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