Graybeard
Distinguished member
- Joined
- Sep 24, 2014
- Messages
- 440
- Reason
- PALS
- Diagnosis
- 12/2013
- Country
- US
- State
- Ca
- City
- Surf City
Here's what I sent to my extended family of two dozen or so, and only one response. Why?
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This was my Jan. 2014 note to you all. Scroll down for the update.
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.
------------------
It's been over a year since I wrote the above. I knew little about the disease when I wrote that. I found a Forum a few months ago, and I've learned a lot about the disease from others. Because of my 60 lb weight loss, the neurologist didn't give me much time last year; weeks or months, not years.
ALS is called Motor Neuron (nerve) Disease in other countries. The neurons die. Veterans have twice the rate of ALS as civilians, so it is considered a service connected condition. VA has been great; much better than civilian care I was getting before a widow told me about VA last year. She has become a close friend - as close as I can get with someone in Seattle. She came to visit last summer.
MY CONDITION
Ronna, Rex and Ross have largely taken up the slack through my transition from Mr. Fixit to Mr. Helpless. I can still drive, but prefer others to do it. Besides, somebody is needed to push me in my portable wheelchair. Friends and neighbors pitch in, too. Rex and Julie live 80 miles away in Phelan, so are here only on the occasional weekend.
Since going to direct stomach feedings last May, I have regained 13 of the 66 pounds I lost, so my prospects for more time got better. Eating and drinking are highly overrated.
ALS strikes every victim differently. So far, I have been lucky to escape the spasms, pain, dementia and emotional suffering so many have.
My words have become unintelligible, so family has to interpret, or I use a portable computer for text to voice.
I can still walk, hunched over due to back pain, but not walk far, and my arms and hands are pretty much intact, although very weak. I still go up and down the stairs, but the risk of a fall is real.
My ability to breathe is on the decline. The voluntary nerves to my diaphragm are dead. When the day comes I can no longer breathe on my own, I have the choice of a tracheostomy, which would require somebody to be within earshot at all times for a simple procedure a few times a day. The remainder of my neurons would continue to die at some rate. ALS is a cruel disease.
PLANNING
We have the plans almost ready for a new garage with a handicap room over it, and a wheelchair lift. Otherwise, it's a day at a time. I still have a strong will to live.
FUTURE
Some stem cell research shows promise for future victims.
Best to you all, my dear family.
Ralph
-----------------
This was my Jan. 2014 note to you all. Scroll down for the update.
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.
------------------
It's been over a year since I wrote the above. I knew little about the disease when I wrote that. I found a Forum a few months ago, and I've learned a lot about the disease from others. Because of my 60 lb weight loss, the neurologist didn't give me much time last year; weeks or months, not years.
ALS is called Motor Neuron (nerve) Disease in other countries. The neurons die. Veterans have twice the rate of ALS as civilians, so it is considered a service connected condition. VA has been great; much better than civilian care I was getting before a widow told me about VA last year. She has become a close friend - as close as I can get with someone in Seattle. She came to visit last summer.
MY CONDITION
Ronna, Rex and Ross have largely taken up the slack through my transition from Mr. Fixit to Mr. Helpless. I can still drive, but prefer others to do it. Besides, somebody is needed to push me in my portable wheelchair. Friends and neighbors pitch in, too. Rex and Julie live 80 miles away in Phelan, so are here only on the occasional weekend.
Since going to direct stomach feedings last May, I have regained 13 of the 66 pounds I lost, so my prospects for more time got better. Eating and drinking are highly overrated.
ALS strikes every victim differently. So far, I have been lucky to escape the spasms, pain, dementia and emotional suffering so many have.
My words have become unintelligible, so family has to interpret, or I use a portable computer for text to voice.
I can still walk, hunched over due to back pain, but not walk far, and my arms and hands are pretty much intact, although very weak. I still go up and down the stairs, but the risk of a fall is real.
My ability to breathe is on the decline. The voluntary nerves to my diaphragm are dead. When the day comes I can no longer breathe on my own, I have the choice of a tracheostomy, which would require somebody to be within earshot at all times for a simple procedure a few times a day. The remainder of my neurons would continue to die at some rate. ALS is a cruel disease.
PLANNING
We have the plans almost ready for a new garage with a handicap room over it, and a wheelchair lift. Otherwise, it's a day at a time. I still have a strong will to live.
FUTURE
Some stem cell research shows promise for future victims.
Best to you all, my dear family.
Ralph
