ALS Stays Same - Life Keeps Getting Worse

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delb

Distinguished member
Joined
Oct 30, 2007
Messages
155
Reason
PALS
Diagnosis
07/2007
Country
US
State
Texas
City
Seagoville
Well for those who read my Lost And Depressed thread, my ALS keeps staying basically the same as from the beginning. But now my wife has told me she is leaving me again. She left me once a year ago, and I have no living relatives on earth. And almost no friends who what anything to do with me anymore since I can't talk, hardly eat or drink, and am cripple in my left leg. I sold my house and gave her the money and my checking account to win her back. She was the only near relative I have or had. Now she emails me she will be leaving again. Can't even talk to me, read my notes, or listen to my computer talk for me. To have this horrible disease and no caregiver, place to live, or close friends is the worse situation I can thank of. A few years back she had developed a hole in her eye and the situation could have made her blind. She couldn't work and I told her not to worry about it and I would pay all the bills on my house at the time. She had it fixed and it didn't return. How short a memory people have. I bet a lot on her when I sold my house and gave her my money. And now appear to have lost big time on everything.
 
delb, I don't know you but it sounds rough what you are going through. I don"t want to be mean and I am not in your position but attitude is everything. I know when I was first sick and my attitude was terrible no one wanted to be around me, family, friends etc. If you need care I'm sure you will not be denied and left alone. Do you have a social worker and if this is the case would you consider a care home. Try to keep happy, it's the spirit inside that will keep you going. What helps for me is never mind one day at a time, sometimes it's one hour at a time. Mya
 
Mya,
My attitude toward my wife and others has remained upbeat and great. Even my long time doctor says I am handling this better than he could imagine. My mindset is I will defeat ALS. But the loneiness is unbearable. I have no social worker or anyone. I have one friend locally from the company I worked for for 21 years. He still meets with me and we think I should get a dog for friendship. But my wife won't allow it. I was in management and made a six figure salary. Was laid off without warning or cause. Shocked everyone in the company top to bottom. Didn't let this defeat me. Got another job for little more than minimum wage. When I came down with this and couldn't talk they also let me go while saying what a super job I was doing, but had to have someone who could talk. Didn't even let this defeat me. But the current situation with my wife and the rest that has happen in the last few years is hard to take. My spirit is not totally destroyed yet or I would not be writing this thread.
 
Precisely Delb. I admire your spirit and God will strengthen you to keep the fight going. That is a promise He makes to all. I will continue to pray for you.
 
vmd,
I thank you for the prayers. Many at my previous jobs are praying for me too. My condition seems to be stabilized in that it is not affecting any other parts of my body except the original ones when I dropped dead. I say dead cause I was standing at the refrigerator one Saturday morning last December. I felt fine and next thing I knew I was flat on my back on the floor. All alone, I looked around and saw melting ice I had dropped. Judging from the way the ice melted, it had been about 1/2 hour. I remember having a long talk and given the choice of the easy way or the hard way. I saw the end of both and chose the hard way. The other person smiled and I fought my way back to waking up. Can't remember who I talked to or the subject of the conversation. Thought it was just a dream until days later I started losing the ability to speak and started to develop a limp. And things started getting harder and harder. The doctors thought I had a stoke. But after many tests could find nothing wrong with me. I know there was a reason I chose this way, but right now I don't know the ending.
 
Delb, please, I am not trying to be ugly, but Jesus I can't help it! I read your first post, today's that is. I read myooshka's reply, and then I started reading your second post, and I got to the part about you getting a dog for companionship. By God delb, GET YOU A DOG! Get you a dog now, tonight. You will come out ahead, and you will be stress free! I told you I didn't want to be mean! I'm sorry----delb, now let me go back and finish reading your post. I just couldn't resist the "getting me a dog" part. LOL! Naw, really delb, we care about your well being, may God bless you!

Irma
 
Irma,
I was going to get one today. But my friend who was going to go with me to get one was not available. Got his email 24 hours after he sent it. My wife is leaving me alone again for the Thanksgiving Holidays. Doesn't want me to go with her. If my friend is not busy or out of town I may get one then. I want to go to the pound and save the life and soul of one I pick out. At this point I don't care if my wife likes it or not.
 
del,
good for you. you need the loyalty and unconditional love that only a dog can give.
 
Cheryilyn,

I agree and hope to get one soon. I have had a couple previously. But now I have the time to be with one all the time. Good for me, and good for the dog.
 
so sorry

Delb,
I have been reading all your posts & I am totally disgusted with the way your wife is behaving. I think you have tried everyway possible to make her happy & she doesn't seem to even appreciate it. My personal opinion is to tell her to HIT THE ROAD NOW. She is not worthy of your love. Get your dog & it will love you unconditionally. Please take care of yourself as you can see we are all very concerned about you. Please have a Happy Thanksgiving. God Bless you & you will remain in my prayers.
Sharon
 
Sharona,
Thanks for the words of support. I too believe I have done everything in my power to make her happy for all these years. Only to be blamed for every single thing in life that goes wrong. And I mean everything...
 
delb
I know how hard this is for you. My husband has been trying for over1 yr to find out what is happening to his body. Muscle weakness & wasting,brisk reflexes,babinski symptoms ,fasiculations, tremors, difficulty swallowing & now some tongue tremors. You DO NOT NEED THIS ADDED STRESS. Please try to find some peace do not let someone blame you for everything . We are all given free will & she could leave at anytime .Some people just don't believe that they are part of the problem . God Bless you & take care my friend.
Sharon
 
Sharona,
You are right, this added stress is exactly what I don't need. She is hardly ever here anyway. Will be out of town for Thanksgiving and told me she doesn't want me to go with her weeks ago. I would love to not be here when she gets back....
I always hope for the best, but am at my wits end trying to find a positive way out of my home life. I am using all my will and everything fighting ALS and don't need this added stress.
 
Hi delb,
I don't know anything about your spiritual life, but maybe you can find a pastor or someone from a church to try to help you to figure things out. If you can still drive just go there so you can communicate by writing things down. You will continue to be in my prayers.I don't even know you & it makes me so sad that someone has to go through this alone.God Bless my friend.
Sharon
 
I have tried contacting a church or pastor. While they were kind, they can offer no help. Someone from this forum even contacted a church in my area who told them they could not help. Just another one of the many things that add to my depression.
 
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