Welcome to my blog. I have had ALS for 10 years now.

Since I started this blog in June 2008 I've had amazing feedback. Family, friends, people from all over North America, Australia, Scotland, England, and places I can't recall, have commented, encouraged and corresponded. I had no idea when Cynthia taught me how to set this up, how much I would love posting and how many people would read it. I want to say THANK YOU to everyone who has helped propel this therapeutic exercise into a daily routine. All of you, both friends and visitors, are now part of my blog family. Welcome.

From Go Pro

From Go Pro
View from my living room

Saturday, August 29, 2009

An apple per day keeps the doctor away

I visited with Dr. Jeremy Road, my respirologist, Wednesday. My FVC had dropped over 10%. This is worrisome to me as it falls in the "caution" area.

FVC - forced expiratory vital capacity

The volume change of the lung between a full inspiration to total lung capacity and a maximal expiration to residual volume. The measurement is performed during forceful exhalation; the preceding maximal inhalation need not be performed forcefully . The volume assessed is the forced expiratory vital capacity (FEVC), commonly called forced vital capacity (FVC).

When I decrease to 60% I will be put on a wait list for a PEG(feeding tube). Although I may not need it right away, I will eventually, and they don't like to do the procedure when your FVC is below 50%.

I started in 2007 at 110%, then 96%, 85%, and now 73%. I seem to drop 10% every 6 mos. Although the doctor isn't worried, of course I am. I was originally hoping I'd be one of those lucky ALS patients who had strong FVC for years. One has to dream of the positive.

It's rather ironic that I developed ALS as I hate change. With ALS, you just get used to one change and another rears it's annoying head. I'm learning to adapt quickly--but not without frustration and tears. I've had some practise adjusting to change--regarding my clothing size. LOL.

Oh well, I have today, and tomorrow and ?? Living in the moment and enjoying every day becomes more poignant.

Hug your loved ones, phone that old friend, because "you just never know."

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