Annmarie

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hope your symptoms magically disappear...

To Annmarie, Leslie, Conrad, VMD, and even Jamie (if you're still reading these posts) We should prepare ourself for another possibility. My ALS clinic says my symptoms most likely will not get better and I should prepare myself for getting worse. Reading between the lines I think that means whatever I have is in "pause" mode, meaning I am not perfectly healthy but may not get bad enough for them to be able to DX anything for certain. To me, that means I must stop wishing for good health and NEVER wish for a DX of ALS. Never. Instead, what I must do is live live with the health I have, and do all I can while I can. IMO. It is just the philosophy that works for me...REgards, Cindy
 
Before I was Dx with ALS,I would wake up every morning hopng I would be better .That maybe it was something that needed to take its course. Now I wake up hoping I am not worse. I agree with Cindy.You cant be consumed with this disease or else it will eventually consume you. There are people on this forum coping with ALS and waiting for a Dx and there are others not coping well at all .And I worry that if they continue like this it will take over their lives the lives of heir familys. Yes I am scared very scare But that will not change the fact that I am dying. We all are dying ,young ,old ,sick healthy, rich or poor and theres not a thing we can do about it . So please used the days you can as long as you can . Because you dont know if you are going to be worse when you wake up in the morning God Bless us All.Thanks. Pat
 
Cindy: Yes, good thoughts. It does seem as though some of us will have to wait a long time until a diagnosis. Meanwhile, we place ourselves in God's hands. If some of us have ALS, we already know from the various patterns in the PALS group, that there is no such thing as the norm. The PALS have different rates of progression, seemingly.

By the way, Pat, perhaps you did not have fasciculations until later because your initial diagnosis was based on bulbar symptoms. It seems those with bulbar onset do not develop the weakness and fasciculation issues until later. Also, from what I remember, your diagnosis is bulbar palsy, correct? I should add that this is not my first experience with fasciculations. I can recall having bouts of fasciculations in the past, as long as 15 years ago or longer. However, those fasciculations were almost certainly BFS because I did not experience corresponding weakness nor did they present as they do now. I can tell the fasciculations I have now are different in form, frequency, and duration.

annmarie: I wish the same for you. However, if my symptoms do disappear, I will classify it as a miracle.

This is somewhat unrelated to the discussion above, but how many of you have disability insurance? Any ideas about how and where to acquire disability insurance or can you direct me to some resources? Thanks.
 
Dear vmd I always thought that bulbar onset is very quick Is that you experience with reading up on it. Pat
 
Happy Birthday Annmarie!

Annmarie - I hope your birthday today was a great day! Happy Birthday. ~Leslie
 
patricia1 said:
Dear vmd I always thought that bulbar onset is very quick Is that you experience with reading up on it. Pat

Yes, that is what I have read.
 
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