Clinic Visit

Went to clinic Friday, 3/20. It was packed with newly diagnosed patients. Good news and bad news.
- I haven't lost any weight since the last visit and getting my PEG tube, in fact gained 2 pounds! I'm blending foods not on formula.my digestive system can't handle the formula.
- haven't had significant lose of muscle strength in legs, but yes in arms which I knew.
- worst was my FVC was at 40%, down from 73%. But my breathing numbers always yo yo up and down big time. I don't have any shortness of breat and can lay flat without struggling. I only use bipap at night. They offered to do it again, but I said no.

So overall not bad. Yes the number surprised me, but in the bigger picture I have lots of life left.

Tracy

Great clinic visit and report! Always great to hear that you are in control of how you are feeling and not the numbers. Well done, Tracy!

Jim

>but in the bigger picture I have lots of life left

terrific!

Great news. I'm going down to Sunnybrook for a clinic visit on Tuesday. My wife is concerned about my breathing over night. Looks like my cpap is heading towards a bipap. Don't want to deal with breathing stuff so early, but iiwii.
Vincent

I do breath stacking already, but the doctor recommended a little device to get. Once I get it I'll post pictures. It is another exercise to help the muscles. He is doing a study with it and I'm going to be in it. My local Pulmonologist is going to monitor me. So all is good"

Vincent, I don't want to hijack here but CPAP is NOT FOR ALS this is not good for your breathing muscles at all.

Tracy, thanks for filling us in on your visit. The problem with numbers is that they look so official. So many things can affect a PALS breathing on any particular breath, or on any particular day. Regular testing gives and indication only of the trend and in truth if a sudden very poor reading is taken I think it should be checked again the next week as it could just be a 'bad day'.

We know a PALS breathing declines, and you know most of it by what you experience and you adjust to that. What better measure than to know you sleep well with bipap?

Tracy,
My fvc was 40 in December, I hope that this clinic will be better, I go the 27th, I have lost more weight and they will fuss about that, I'm still 5'2 and 154 pounds, I don't think I have anything to worry about.

Janie

Janie, what you have to remember is that PALS who keep good body weight do better. If you are losing weight then you are not taking in enough calories and for PALS that is just the bottom line. You have to look at body weight in a totally new light now - bigger is better!

Steve's fvc have gone up Tracy yet he struggles and is using the bipap a.lot more. It is all in how you feel.

Great Tracy!
I had my clinic on 3/18 at UT Medical in San Antonio.
Weakness and breathing were down a little. But gained10 pounds! Other than that, it was a long day!
Marty

You are right Tillie, I am going to have to start using my PEG, thanks for caring.

Janie

Janie H "You are right Tillie, I am going to have to start using my PEG, thanks for caring."

I now use my PEG for 90% of what I eat. My favorite snack I eat is loaded mashed potatoes. We blend everything else. No formula.

Tillie, I always take those numbers with a grain of salt because I feel good. But on the hand I think 50% loss in four months, where will I be in 4 more months? I plan to be here to see my daughter graduate in May of 2016. She made Mortar Board, one the top 50 in her class.

Tracy

Tracy the loaded mashed potatoes as a snack is brilliant!

I know what you are saying about 50% loss in 4 months, but remember so many things can affect the numbers on any given day. What if you were having a bad day, your lip seal was very poor, the technician didn't do their job properly or a number of other factors were involved?

So all I'm saying is maybe the drop wasn't as bad as your numbers showed either xx

Just a reminder to everyone. If your breathing changes suddenly and you are wheelchair bound, please do not ignore it. I barely escaped death from two pulmonary embolism's that were missed by the ALS pulmonologist. My saying if it happens suddenly, it may not be ALS. The rest of the stuff that happens to regular people can happen to us. Couple years ago my gut pain turned out to be appendicitis. Good luck everybody.

>I plan to be here to see my daughter graduate in May of 2016

atta girl!