I posted the following in Jan. 2014:
Without Good Health Ö.
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, ďThe Lou Gehrig Story.Ē
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. Thatís one sign. Another is uncontrollable crying, so donít be surprised if I go silent or cry the next time we talk.
Except for this, I have been in near 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 wonít 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. Iím 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 doctorís 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 familyís 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 then. 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. ALS is rare, as you must know. There is a one in 64,000 chance in a year.
Medics handle ALS so differently from most diseases, as they know there is nothing they can do; no surgeries or chemo; no false optimism. There is no industry built up around it. ALS is somewhat like aging ten years to one.
Ronna, and sons Rex and Ross, and good neighbor Gene Carrothers, 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, near where he teaches 9th grade science, so are here only on the occasional weekend.
Since going to direct stomach feedings last May, I have regained 14 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 may 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.
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.
Some stem cell research shows promise for future victims.
I have said many times, "You don't have to look far to find somebody you wouldn't trade troubles with." That's still true for me.
I like to keep in touch by email.
Let me know if you would like emails of my adventures: "Climbing Popocateptl" and "Spring Break 1961."
Please don't bother to reply to this. What you think of me is none of my business.
Rick....This is Jerry Davis in Houston.....Read your letter....I'm 83, still functioning but time is taking it's till. I'll happily respond to any messages you care to send. Life is not for the timid. Jerry....
Ralph, thanks for keeping us up to speed on your situation. I think of you often. You are one of a half dozen "forum guys" that I have actually spoken with. I have a lot of respect for you, and how you have reacted to the hand that was dealt you.
I was worried when I saw the title and then your name on the thread......
I'm happy to hear from you, both through email and on this forum. Keep up the bold fight, old friend,
I'm grateful that you can still do all that you do. Yes, ALS shows no mercy. I'll continue to pray for your comfort..
Please do put me in the cc line when you send stories of your exploits.
Ralph, My thoughts are the same as Ed's, and I see you have a more positive attitude. You have been and will continue to be in our prayers my friend. I've been lax with communication.
Give em Hell buddy!
Ralph, We're praying for you. I'm glad you're doing as well as you are. Hang in there.....
I remember talking with you at the Holiday Motor Excursion in 2013. At that time you told me that this would be your last one.
I was very happy to see you at the meet last December, and I plan to see you there again this December.
Hang in there!
I think you know that Linda & I think of you often and enjoy reading about things you are up to, and how things are for you. If it matters at all, we think you are an amazing person with an incredible outlook on life.
All our best!
Linda & David Dewey
It pleases me so much to hear how well you are doing at this time! I told you more than a year ago that I had lost a friend to ALS several years before. You are doing so much better than he did, and I hope you can go on and enjoy your days for many more years to come. Remember, attitude is everything!
I always look forward to your postings and comments. I hope to be hearing from you for a long time yet.
Ride carefully, and enjoy! W2
I too would like to read your of your exploits.
Ricks! or Ralph(?)
Same here and ditto on what Wayne said!!!
I am praying for your comfort and longevity but I am also, if you leave us...
Praying for your ease of travel!!!
See you on the OTHER side.
Hope there are old cars somewhere there.
We will "ALL" see you soon.
Joe in Mo.
Ralph, It's human nature to want to help and give comfort to one of our friends in need, but here you are helping us understand the unfairness of ALS. Your openness in describing the phases of this dread disease show the strength of your character and the bravery you possess. You could have shut your self off from your friends and disappeared into your despair but you've chosen not to. Thank you for this gift. Keep on fighten you old rascal!
Ralph - In your original post, over a year ago now, you demonstrated your positive attitude even then, when you listed what you called,..."Advantages of ALS:
One "advantage" you listed was that you know "about how long you'll have".
Well, just by your interest and activity on the forum, it looks to me like you're greatly exceeding that already so far, and we all want to see you continue that and your positive attitude, and hope to see your name in "The Guinness Book of World Records" many years from now, as a record long survivor of ALS!
As many have said, keep up the fight Ralph,....there are more prayers for you than you'll ever know,.......harold
Can't add a whole lot more. I am so glad to hear that you are being able to do things that please you. It's great to read your posts. My prayers are with you.
Sorry to hear of anyone afflicted with this. And thanks for
sharing your experience. We are all a little wiser for it.
My ex had a boss, years ago, that came down with ALS. He
was a phenomenal motivator and great guy to work for. It took
him way too young and was devastating to the business. I was
recently perusing Google maps of my old neighborhood and saw
the City of Woodinville named a park after him in years since.
Apparently his understated charisma was appreciated beyond
my own vision of him.
Be well, Amigo.
Thanks for the update. I often wonder how you are doing. Keep up the positive attitude.
Ralph, we've both been on this forum since Gus Stangeland days and I've always enjoyed your posts. Been trying to find an excuse/opportunity/funds for years to get to Califuny to meet all the T nuts there, still don't see it happening in a hurry. I think your attitude to this situation is an inspiration, please keep posting whenever you can, and I will email you some stories for your amusement.
Ralph, I have always valued your input to this forum. As I walk now in the winter season of my life I realize that each day is a gift. Thank you for sharing about this chapter in your life--I admire your honesty and strength--one day at a time--hang in there, finish well and may God bless you and your family. Joe
Rick, our thoughts and prayers are with you during this difficult time. My sister was taken by ALS when she was 56. She was the reason Dena and I got into the Model T hobby. I thought she was the bravest person I have known as she handled her situation. God bless you and your family.
I had a friend and colleague who developed ALS, you are in my thoughts and prayers.