Rough couple of weeks

[CindyM]

Hi Seren- sorry to hear about your brother. I hope his surgery heals guickly and I hope he finds a new quality of life with his peg! Cordially, Cindy

 

[swi71]

Seren--
Thanks for your input. Welcome. I know it's hard to say something here, but everyone is so compassionate and helpful. After dealing with ALS for 6 yrs, I needed a place like this with real information and real people who deal with ALS every day. Some in the medical profession just don't get it. They know a lot about the disease, but don't have to live with it every day.
I have had lots of input about the PEG from both sides (here and drs). I think that I'll stick with Gerald's decision right now--we'll see the dr in November. She probably won't be happy, but I'm afraid we are already past that point you spoke of. Since he can't talk and is contracted, the PEG will probably be a danger in many ways now.
Thanks to all for all your support.
Sharon

 

[cbrown7777]

Sharon,

I can tell you that as hard as it is to watch over time, you may find some small comfort knowing that you are helping your husband maintain some control over his life. Does that make sense? My mother was 'on the fence' as far as a peg was concerned, but she went forward with it at my father's request. It was a decision she felt she really didn't make for herself, and she regretted it, as did he. My prayers to you and your family.
Carrie

 

[swi71]

Just catching up

Just wanted you all to know I have not dropped off the face of the earth--just gone to the nevernever land of teaching math again.
Gerald (PALS) continues to hold his own. He has been crying a lot more, but we don't know why. How we take communication for granted.
Beth (daughter) heads to TN to finish her student teaching this week. She is scared and excited and wanting so to be done. She had the tests to be sure she could still wait for the thyroid surgery and everything came back OK to wait. Now she just needs to get safely to TN and get started. (She is driving).
We have decided to leave another dr in Chicago for a number of reasons. What we need now can mostly be supplied by his local GP. We were promised support and just got more rejection. I've had enough of that.
Love and prayers to all--I've been trying to browse through and catch up on some.
Sharon