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In all the forums I go on and articles I read on ALS I have never heard someone say they wish they had gotten their peg later. Only the ones that wish they had gotten it sooner.
 
thanks! i believe i can handle a peg. i don't actually need a peg yet--i can swallow food easily and my weight is good (183lbs). they just want to do it proactively because the anesthesiologists need for my fvc to be good to do the surgery. i think i can handle it, hey, no more swallowing pills, right?

if i have the peg, but don't use it much, maybe maintenance (tube replacement) will be less frequent?
 
Ahands you and I are spooky similar

Just got back from clinic, FVC 47%, had PEG talk. Doc said she won't do trach talk till 30%
 
I am sorry to hear this, John. I hate to hear about our PALS getting these talks, even though I truly believe those PALS who have had these procedures and tell us it all works out fine in the end. I just hate to see any progression, is all. Cindy
 
...spooky similar...

was your onset in the left thumb too? mine--march 2005.

are your feet and hands freezing?

i meet with the surgeon next wednesday--just to talk & sched procedure, i think.
i apparently misunderstood about the trach--its just PEG for now.

i wish we could get diaphragm pacers. it sounds like by all accounts, they are good, but held up by red tape. and am some point our fvc will be too low to permit the surgery (maybe already)
 
Started in left hand

Fasics started May 05, had a "pumped up" sensation in left bicep when trying to button left collar button on button-down shirts as early as Jan 05.

Thought fasics were stress, coffee, lack of sleep. Stockbroker at work by 6am.

Worked out every day. Early Dec 05 had moments in the gym where left hand just didn't feel right. Saw first neuro last Friday of 05, she said "no way is this ALS, you're too young and look too good. Maybe you're overdoing it in the gym."

And such the journey began. Was in such good shape, even stumped ALS clinic at UCSF. Was officially diagnosed June 07. Even then UCSF said I'd live at least 15 years.

Well, here we are. I would bet a good bit of money, I don't see 2011.
 
Tall John, at least your first neuro did not suggest a psychiatrist visit...
Look at it from a positive angle: for a stockbroker these days disability may be the only alternative to a guaranteed unemployment :)
 
Dps

Under the "research" section of the forum, there is a thread about DPS (diaphragm pacing stimulator). There are a few links, which are very informative. Also, I believe the device has been approved by the FDA in the states. I inquired with a person who wrote an article about the device, and I was told to contact Dr. Onders in Ohio.

Good luck.
Pam B in Va
 
Ahands-one more thing

Did ask about pacers : Not approved, some study now in works, she said maybe end of August ?

That is how Ben Byer (Indestructible) died, having one put in ?
 
Let me know how appt goes

One of my caregivers is David Ames' widow (google him), she said pacer did not work for him.
 
Ahands come in

How did PEG appt go ?
 
I believe that in Cleveland, the only place for diaphragm pacing is at Cleveland Metro Hospital. This procedure is not offered at Cleveland Clinic and is still experimental. Good Luck!
 
How did PEG appt go ?

went well, thanks!

i asked him to re-check my fvc and blood saturation. he could not do fvc, but checked my blood saturation at 95%, which is, i believe, quite good.
i'm scheduled for peg surgery on 3rd of March.

i've got a spirometer on back-order since 5 january--i hope to experiment on my own with improving respiration. this unit does fev1 AND fvc.

meanwhile, i'm looking into more alt therapies and lately feeling like my best hope is miraculous intervention of the mind and body's own ability to heal itself.
 
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