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GregK

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As a young man I thought I had a pretty good handle on "pride".

I was proud of my country. I wasn't blind, mind you. I did live through Vietnam, but overall I thought that Americans were kind, creative and resourceful.

I was proud of having served. I was a med lab tech in the USAF and VA (yes, I recognize the irony). I was a programmer for the state of Oregon. I was a computer scientist for the NSA.

Over the years I became aware of another use of the word pride. A negative use.

It usually came in the form of "he's a proud man". It was usually directed at some old coot who refused to take some action or help which was sorely needed.

"Pride" in these cases was synonymous with stubborn, foolish and just downright stupid.

In July of 2015 I fell while using my rollator. It was on the wood floor and my head made a decent klonk when it hit. But other than a sore butt I had no ill effects. In spite of recommendations to the contrary and in spite of an increasing uneasiness, I kept on walking with my rollator.

In retrospect I see that I was proud of the fact that I could still walk.

Unfortunately that pride wasn't the good kind.

In mid November I fell again. This time in the bedroom on carpet. It was a pretty good one. My head barely missed the solid oak bed frame, but did make good contact with the floor. For some odd reason my feet didn't move so I sort of 'folded' and hyperextended them. It hurt to bend them for weeks.

My wife heard the fall, threw a bowl of grapes in the air and came to my rescue.

Over the next two months I lost more than in the past year.

I can do a standing transfer onto the toilet but no longer have the arm and leg strength to stand up off of it. I have to use a transfer board to get back onto my pwc.

I used to park my rollator near the shower and use the shower grab rails to walk over to my shower chair; now I have to park my pwc next to the shower chair and do a pivot transfer into the chair. My wife backs the pwc out of the shower.

Small efforts cause me to lose my breath

My left hand cannot now hold anything of weight, my left index finger and thumb are almost useless. My right hand is noticeably weaker.. My Sonicare toothbrush takes both hands.

I gave up on driving: my right arm cannot turn the steering wheel and my right thumb can't depress the shift button.

I seem (hope, pray?) to have plateaued again.

I'm not looking for sympathy. Stubborn and foolish do not deserve sympathy.

Stupid doesn't deserve sympathy.

The moral here is pretty obvious.

If you allow your pride to control your actions you do so at your own peril.
 

gooseberry

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I wish Steve would listen/read this post. He has had a couple falls with his rollator. He wears floppy slippers and was told he was losing the right foot. At clinic they told him to use his pwc. He said as long as he could walk he was. He says it is because of the loss of independence. I feel like he is limiting the independence he could have due to his choices. Nothing I can do makes a difference....his disease, his choices.
 

KimT

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Dear Greg,

I appreciate the time and effort it took you to outline what happened and why. It's a good warning.

Now.....don't be hard on yourself. You were trying to hang on to your independence. It just went bad. You took what went bad and turned it into a lesson we can all learn. You probably will never know how many people you helped by posting your experience.

Thank you.
 

affected

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Oh Greg :(

Thank you for putting your pride aside to tell this tale.

I know with certainty that I watched Chris lose functionality after each of his falls, even the ones that were not so major. Not only that, but the injuries caused him pain the rest of his days. (ruptured shoulder tendons)

I remember someone here saying once - you have more dignity sitting in a wheelchair than face planting.

I hope you are hitting a plateau again Greg.
 

gooseberry

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I am sorry you progressed after your falls. I hope you are in fact stabilizing and not progressing.
 

GregK

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If you can forgive the new age speak, I have found my center again. So, no worries.

If the story can move another "old coot" to a better decision there'll at least be some positive outcome. 8^)
 

Nikki J

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Thank you for sharing. Hoping for a long plateau now for you!
 

frankb

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Thanks, Greg. And to think that I went to the rollator to keep from falling. Now I will take extra care even with my rollator.
 

swalker

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Thanks for sharing Greg. You put it quite eloquently.

This is a message I need to hear and I am listening intently.

I am at that silly stage that if I am really careful, I don't fall. I doubt I will be able to foresee when I will make the transition to the stage that even being careful does not prevent the fall. I struggle with how to handle that transition.

Steve
 

affected

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It is a really hard transition.

The problem is a fall happens in the blink of an eye!

Rollators do really help, up until a point, then they are not safe enough either.

Greg I hope this helps other coots young or old to realise how dangerous falls are for PALS.
 

fionae

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Dear Greg,

Thank you so much for the insightful, thoughtful, and thought-provoking
message.
You expressed everything so beautifully, and profoundly.
I would like to echo Kim's sentiments written in her post to you...
"What she said."
And I echo along with everyone that I hope you have indeed reached
a good and a long plateau.

Thank you so much,
Laura.
 

Ells

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You're only human Greg! Don't be hard on yourself.

We do whatever we can to hang on to every last shred of independence, often with disastrous consequences. But we learn (or should learn).

Hope you remain stable for some time.

From a stubborn, not so old, cow :)
 

Osiyo

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@♥ GregK, outstanding narration, just grabs you, slaps you and opens your eyes and ears, clears the mind so that one can understand what one just read. Bravo, Been There Done That, Sau Sponte Semper FI Ooohra, I know them all was also over there in the Nam, proud as can be, was with the MAC V SOG, and we did cross border operations / Cambodia / Laos / North Vietnam intelligence gathering about POWs / carrying out rescue missions; rescuing downed aircrews in enemy territory, among other things, Zero One was my designation.

Microsoft Certified Master (MCM) Microsoft Certified Architect (MCA) Directory Services 2008R2 /2012R2 worked for the most really famous Banks Airbus industry and made damn good money as freelancer.

Then I can down with this ALS as my C9ORF72 gene is expanded something over 1000 times, the official name of this gene is “chromosome 9 open reading frame 72.”

So I have adopted a humbled mode, and take each day as it comes, just like in the jungles, concentrating on the thing at hand, moment by moment. It works for me. I have been living with this disease since July 2015, so I'm learning slowly but surely the ropes of the trade. I'm in the middle of a fire fight with my body and I'm losing the fight but that's OK, now I have come to this conclusion.

Thanks to all I read and all those the give of themselves in the form of knowledge, priceless it is. B blessed and have a super day. so before I go I must again say Thank you so much for the insight, and the thoughtful, and the thought-provoking message. You expressed everything so beautifully, and eloquently and can't forget profoundly.

:oops:
 

chally

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Hey Greg,I think you wrote that up just for me, least that's what I want to believe,thanks. I think you know I too was in country in 69 and carry scars to the grave . Have just started reading a book called "Learning To Fall" The Blessing of an Imperfect Life. By Philip Simmons. Have you read it? Love ya bro chally
 

GregK

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Thanks all. 8^}
 
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