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Graybeard

Distinguished member
Joined
Sep 24, 2014
Messages
440
Reason
PALS
Diagnosis
12/2013
Country
US
State
Ca
City
Surf City
I was diagnosed last December, so this is a little late. I found this Forum a few weeks ago, and I guess it's time to introduce myself. Because of my 60 lb weight loss, the neuro didn't give me much time; weeks or a few months. You can see how little I knew about the disease back in January when I sent the following to all my family and friends.


Without Good Health ….

When it became obvious I was losing a pound a week last year, I joked that I would write a diet book. Turns out it had already been written, and was one of the few books I had read as a child, “The Lou Gehrig Story.”

Yes, at age 73, I have just been diagnosed with ALS: a death sentence. To prolong my limited health, I have to lose no more beyond the 60 pounds I have lost in the last 15 months.

Those of you who have heard me speak know my voice has turned raspy and weak. That’s one sign. Another is uncontrollable crying, so don’t be surprised if I go silent or cry the next time we talk.

Except for this, I have been in perfect health, with blood tests good enough for a 19 year old, and a good neighbor who dragged me out for a hike and exercises every morning. I had fully expected to be productive another 20 years. Now it may be at most a couple of years before my body becomes useless.

Ronna has always said she wants to go first, so she won’t have to clean out my garage. Our sons, Rex and Ross will help clean out my garage, now that I have a real deadline.

Ronna will still have my voice to haunt her, as Greybeard, our Congo African Grey parrot, is bonded to her. I’m his rival, so he learns all his words from me, and sounds exactly like me.

Advantages of ALS:

No physical pain.

My alleged mind should be intact to the end.

I am under doctor’s orders to eat all I can.

I know about how long I have and how I will go.

I have time to calmly put my affairs in order, and to ease my family’s transition.

I am free to break any law. What can they do to me?

I still have time for a last fling.

Most of all, I get to hear the good things people say to me without the negatives.

Best to you all.
Ralph
 
Ralph, those are the wisest words I have seen in a very long time.

You were quite the optimist, too, planning to live to 93!

I'm totally healthy and I plan to spend all my children's money before 86. :)
 
I am free to break any law. What can they do to me ? ........... i think i will pass on that one. don't want to spin rest of me days in jail
 
Graybeard, thank you for sharing that. It contains wisdom, a positive spirit and a reality check! Hats off to you for the good humor you are finding (sometimes!) to face this demon.
 
Ralph thank you so much for introducing yourself this way now.

I had to read it through twice because there was so much in what you wrote that was wonderful, uplifting and plain funny.

The neuro can't tell you how long you have, maybe he is right and it's only months, my Chris was rapid progression so I know this happens. I also know that severe weight loss is a key factor in aiding progression. It still doesn't mean they know how long you have, and maybe he meant if you keep losing weight at the same rate you won't have long at all. That would be true, my Chris was around 48 kg when he passed, he couldn't have really survived with many more kg gone even though it was his breathing that took him, he obviously had so very little energy even to breath by the end.

So have you found a way to drastically increase your calorie intake now and are you putting any weight on or holding?

I also know, that weight loss is not the only factor here. If you were eating less over that time as you lost the weight, your digestive system goes into a state of not wanting as much as you need and not coping so well with suddenly taking in a lot.

By the time Chris agreed to the peg he was emaciated and dehydrated and he never took well to peg feeds finding they made him nauseous and feeling bloated, no matter what types we tried. Really it was that his digestive system was already depleted and it's very hard to turn that around.

Again thank you for sharing so honestly, we can all support each other so much better this way.

hugs to Ronna
 
Thank you all for the comments.

Looking back on it, I lost weight because I lost my appetite, and was getting only about 1,000 calories a day. I got the peg tube right after diagnosis, as recommended, but did not use it for another 3 months, so I continued to lose. The Home Health nurses were worse than nothing. I finally got real help in using the PEG from VA nutritionists. By then I had slid down to 154. Now I am 163 and climbing slowly. At my six foot height, one medic advised if I went under 150, recovery would be in doubt. I take a can of boost+ every couple of hours. My stomach doesn't like more than that.

I no idea that pain, cramping and FTD were possible with ALS until I joined this Forum.

Ignorance is bliss.
 
Ignorance is bliss to a certain point ...

Now you can at least see what you can work on and what you can try to deal with.

The pain shocked us too Ralph. At first Chris had no pain, it was all bulbar, then a bit of losing hand strength. Then as muscle wastage got serious the spasticity and pain started in earnest. With FTD (or being bull headed, I can't tell really) he simply refused pain relief and lived many long months in terrible pain believing that was how to fight the disease.

Please, use what you can to combat the pain so you have better quality of life.

ROM, Massage, panadol, baclofen and yes narcotics in small frequent doses. No one should have to suffer this out.
 
:') Glad to see you've kept your sense of humor..most of the time anyway. Xo
 
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