ALS takes another thing away

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tripete

Very helpful member
Joined
Dec 5, 2014
Messages
1,002
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Lancaster
Tomorrow will be my last day of work. It gets frustrating as I have no control over anything anymore. Fist my body, now my career, my life is next.

AlS -Sucks!
 
I'm so sorry for the loss of your career! I was fortunate in that I was already retired when I was diagnosed. But, I can relate to the lack of control...I don't like it at all and I dread all that is coming. But, as Max always says it is what it is. You're in my thoughts and prayers. I hope that knowing others understand and care helps comfort you in some small way.
 
I so understand what you are facing. I gave up my teaching career, a career I loved with all my heart, on Dec. 12. It was hard, and I find myself thinking back on those wonderful children in my class and the many years of teaching I had. Six weeks have passed, and as hard as it is, other experiences and opportunities have presented themselves. I have more time to read, connect with friends and family, spend time with those closest to me, sit in the sunshine and relax, etc. I hope you too will find in time little blessings in your day that work and your career once filled. My thoughts and prayers are with you as you say farewell to your career.
- Charlene
 
I understand your frustration! You must have loved your job! What did you do? I used to be a CNA. I had to give it up before my diagnosis, thinking I could go back once I was fixed. So, now that I'm not working, I'm doing all the living I can! ALS is a B!&$#. Stealing how we defined ourselves. Hope you can find a way to enjoy your early retirement, and spend time with ones you love.
 
Thank all of you. For 30 years I have sold and repaired surveying equipment and while I most certainly liked what I did I never planned stopping at 48. There are many other things that I intend to do as long as my body allows, I have started a book I want to finish, have a second one in mind, I would like to take up painting again etc..

I think the hard thing is the lack of control over everything. Our lives are destroyed by this demon and we just have to sit back and take it. We cant exercise our way out of it, we cant eat the right things, or take the right pills, we just waste away to uselessness. I watch my wife struggle and I can nothing to help her, I see things that need to be done and I cant do them, I feel like a useless bag of bones and organs.

By nature I am a fighter (I use to be a winning triathlete and distance runner) but here there is nothing I can fight. I don't really know how to accept things as I have always been able to change them with enough will and effort.

My mind is very much alive and active, I will just need to keep trying to find new ways to express it, while learning how to accept what is happening. I know all of you understand and again I appreciate your encouragement. -in the end I deserve worse.
 
Pete, deserve much less? ARGH. I almost didn't respond because this seems such a personally PALS issue, but then I realized that it's not--not really. Speaking as a CALS, your wife is a fortunate woman. It looks to me like most of use CALS are attracted to fighters, and she still has one. You are adapting. You have plans to express yourself in different ways. That's how you fight this monster. I know my husband feels the same about watchng me do things that he can't, but it's not true that you (collectively) don't help. Your spirit, your appreciation, your willingness to be loved and cared for while still sharing the person that you are, is enormous help. I've always thought that anger has its uses--it gives strength. You are channeling yours rather than being consumed by it. Not everyone does. Talk about the ultimate challenge--to accept the unacceptable and LIVE in your mind, rather than being stuck there. I'd love to read your books--please finish them.
 
One thing I found useful after leaving work was to keep in contact with some work friends. Whether it be phone or email or Facebook, you might find it comforting to be kept in the loop with what’s going on at work. I stopped work at the end of September 2013, but attended the company holiday party in December of that year (I was invited again this year but didn’t attend). It was nice to see and chat with my old work friends. I’m Facebook friends with some former coworkers, and in the past year I’ve been to movies with a few of them.
 
You clearly are an extraordinary person, Pete! (Triathlons aren't for us average folks!) ;) I am so sorry how hard this must be as it forces you to live so much more in your mind and heart while it peels away activities you love. It does sound like you have a lot to say--please write away at those books.

And please know you are still that extraordinary person--that fighter who crossed every finish line. It was your indomitable spirit that got you across them--kept you from throwing in the towel when it got so hard and every part of your body hurt. No doubt ALS takes away way, way too much, but your bright mind and indomitable spirit remain who you are.
 
Pete, I can very much relate to your feelings. I had a driving passion for my work (I still do, though can't work).

I spent over 30 years in a mix of executive management and super high tech roles. I liked both aspects of my job. I founded 2 companies and worked for a variety of others.

In my case, there was not much of a decision to make, just an acceptance that the time had come to make it formal and go on disability. That was incredibly painful. I had planned to never retire because I enjoyed what I did so much.

I have been on disability for about 4 months now. I occupy my time primarily with medical and insurance issues. I am getting on top of the insurance, and hope to open up some time to do more things with my wife. We plan to travel to some of our favorite places and explore some new places while I still can.

I still see the folks at work about once a month and talk to them at least once a week. I find that very helpful.

I can certainly commiserate, though I am sure I don't have the words necessary to make this any easier for you; but know that you are in my thoughts and prayers.

Steve
 
I had to leave work too as an engineer because of the diagnosis. I had always planned to work till I was 70, but never thought I would not live that long.
 
I'm so sorry Pete that you and all of us are having to go thru this. I do hope that you are able to find peace in whatever your new ventures will be, in writing yours books or whatever the case may be. You are in my prayers.

I didn't leave my job because of the ALS, but left it because of moving here to Arizona. I had full intentions on getting another job in the same filed I was in (thinking my health was going to improve). I was a front desk clerk at a motel in North Dakota. I absolutely loved the job, except for the laundry part of it...lol. I loved meeting new people all of the time and helping them to feel at home in our motel and in our town. I also loved making the reservations and doing the financial end of it. It wasn't until after we moved to Arizona that I and my husband realized that I wasn't getting better, but that my foot/leg was getting weaker and that more than likely I wouldn't be returning to the work field. I was diagnosed with ALS on October 17th, 2014. My last day of work was February 28th, 2014...I miss it everyday. I wonder now how did I do it? How was I able to keep my house clean and work? When now I'm home all of the time and just cleaning the kitchen wears me out? This disease steals so much from us & there's not a darn thing we can do about it, except to pray and hope that they find a cure soon.

Pete, I hope that you and all of us are able to find happiness in this new life that we are now living.
 
I've been thinking of you today, Pete, on your last day of work. What you write about losing control resonates with me. You are very articulate, and I found myself saying, "Yes!" to all you wrote about your life now. Thanks for being so open. It's hard to have to rely on your spouse when you're a "doer" in the fibre of your being. Along with the other posters, I too encourage you to write and finish your book. I believe that though we feel we're just "bones and organs" we still have a purpose and can express ourselves in other meaningful ways. Unlike others, I prefer not to go back to my place of work; it's too painful. Colleagues are quite eager to visit me, and though I enjoy the visits, they're not always easy. After all, they're the living, and I'm the dying. Yet amid the painful realities of our situations, the losses, the physical and emotional, psychological pain, I keep trying to rise above through prayer. My pastor told me to not let ALS define me because I am not an ALS person, but Charlene. What you and I face each day brings the best out in us for our loved ones: the courage to continue loving, giving, expressing who we are, sharing and growing in inner beauty and strength. ALS can rob us of everything, but cannot steal our soul, the essence of who we are.
 
So true anderkling.
 
Amen anderkliing!
 
me 2 -- disability for me this month :-(
 
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