Dps/peg soon

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summerguy2007

Active member
Joined
Nov 21, 2012
Messages
75
Reason
PALS
Diagnosis
10/2012
Country
US
State
Anywhere
City
Gotham
Finished all the prelim tests and will know soon when surgery will be. I'm never short of breath but I seem to qualify for the DPS. They do PEG at the same time although I can still eat almost everything. For the future & 1 less surgery.
 
By DPS, I assume you mean Diaphragm Pacemaker. I go to Cedars-Sinai next Wed. for prelims. It would be cruel to be put in the control group.

I got my peg right after diagnosis. I would be gone by now without it.
 
Good luck Summerguy, I have had my DPS and feeding tube since sept. 25 2013. When I got it a year ago my FVC was at 68%. It is still at 68%. Is it working? I think it is.
 
Good luck! Hope all goes well.
 
How do you handle that clunky box, Patrick? Is yours part of a trial?
 
Best of luck Summerguy! Keep us posted!
 
Good luck with your surgery
 
Hey summer guy,
The box isn't that big and I carry it on my wheel chair in small pouch. I am part of a study with the University of Colorado Medical Center. So I'm monitored ever 3 months.
Patrick
 
Thanks, Patrick. I'm bulbar and still have use of my limbs and only tied down when on the peg. Guess I'll have to get used to a belly pack - if I get it.
 
You could try a money belt. You may not be rich and carry lots money but you feel like it.
Patrick
 
I really appreciate all your good wishes, thank you. Yes, DPS refers to Diaphragm pacer. Since I still am able to do many things by myself, I think getting this done may keep me off a trach/vent, either for many years or till I die. I am still getting enjoyment from my life and have reasons for my strong will to live. Just that will alone may help me to live longer. I empathize with anyone with a neuro disease of any type. and Hope all here have good results from whatever approach you take to handle this. I'm a veteran (Viet era) and I use the VA exclusively with very good care. Of course I'm a little nervous about surgery especially since I don't like holes in me, but it seems to be the best option from what I read, and my Neurologist has a favorable opinion of it, he has a few patients who have it and are satisfied. I'll use the pacer with my PAP machine and a cough assist machine. I've been living with ALS for around 8 years since the first symptom and they think my type is atypical. They really seem to be learning about it in many labs and I think within 5 years there may be a good treatment. That's my guess.
 
.>I'm a veteran (Viet era) and I use the VA exclusively with very good care.

Ditto that!

>I've been living with ALS for around 8 years since the first symptom

fantastic!

>They really seem to be learning about it in many labs and I think within 5 years there may be a good treatment. That's my guess.

Hopefully, the 8 more years for the ffda to approve it :-(
 
Wow, that is great ,, by brother gets his next week,, your post gives me a smiling hopeful feeling , thanks you
 
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