you know what bugs me?

nona

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Do you ever go along with what someone think you said because it's easier than trying to correct them? Yesterday, for example, I had PT and my cat was lying in the sun.
My PT: How is your new kitty doing?
Me: He's doing great. He's gaining weight.
PT: He ran away? He obviously didn't get far. Someone was able to catch him?
Me: yeah

...
 

affected

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Definitely can be easier to just say 'yeah'. The mind goes through a bunch of fun answers however ...
 

Kristina1

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haha i have definitely done this too. also I can always tell when someone is smiling and nodding but has no clue what im saying
 

KimT

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If it were a battle, then we would have a chance to win.

Today, I went to a friend's to put an anti-virus program on her new computer.

She proceeded to tell me all about her morning walk and all the things she was planning that involved getting back in shape. She is a very nice person but I was in a lot of pain today and just wanted to tell her to shut the F*&^ up and let me finish setting up the program.

My niece was on the West coast of Florida for over a week. She decided to make a quick trip over to visit her father (my brother.) He is not doing well and his wife is overwhelmed. My niece stayed less than 24 hours. She is a multi-millionaire and has not worked in years. Her husband is retired and he sold his business so they have tons of time on their hands. My brother doesn't even have a lift chair or a high toilet and he has fallen twice. I can't interfere because I can no longer help. His wife is in very good shape but in deep denial about both him and me. The niece called me on her way to my brother's (three hour drive) and said she was hoping she could take my brother over to see me. He doesn't want to come here. She wants to be entertained and avoid having to spend time with her parents. I had already made plans so I told her I'd see her when she had more than a day to spend with her father. She got the message loud and clear.

Then I decided to extend the olive branch to the younger niece who just had a pacemaker implanted. I called her (upstate NY) and she said she was doing great. After about 30 minutes of talking about herself and her kids and grandchildren, she said, "I don't think I'll be able to visit Dad and Mom this year and when I do go down I won't be able to go in their kitchen." I asked why and she said, "because they have an induction cooktop and, with a pacemaker, I can't be around it." Well, good news! They have a ceramic top. I told her and she didn't believe me. I was the one who had an induction cooktop at my old condo. She seemed at a loss for words. I ended the conversation by saying I hope she had a good holiday season.

I don't want to be a bitter person but this disease is just too hard to explain.
 

MarieLaure

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It seems like no one here is aware of the others situation. They must know about you.
it is indeed bugging.
how about yelling it out ?
( I know you must have thought about it before)
I send good vibes to help you have a soft sail through it all
 

affected

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Vent it all out here Kim - I would have used a lot more harsh words were it me! We know it's hot air to blow it their way ...
 

KimT

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My relatives are very intelligent. They know and understand what is happening to me. They just choose to ignore it. I can't remember any of them asking me how I feel or how it was going for me. They are very self absorbed and tightwads. If I had a billion dollars they would be flying back and forth so much Daytona would have to open up a new airport 😂 😂 😂 😂
 

KarenNWendyn

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“Maybe there will be a cure soon”.

it seems like I’ve been hearing this a lot lately. People are well-meaning and they are trying to say something positive, especially when they don’t know what else to say. I get that.

But if there were a cure that was to help me, I would need it now, not 3, 5, 10, or 20 years from now. And even if it were available now, it would have to restore a significant % of my functional losses, or I wouldn’t want it. So I’d say the likelihood of that coming out in time to help me is pretty much zero.

I hope there will be a cure some day. But it’s too late for me. I try to smile and nod weakly at these well-meaning people. But it bugs me.
 

KimT

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Another thing that bugs me is people cancelling plans at the last minute. It happened again last night. I showered, cleaned the guest bathroom, and got the cards out. That doesn't sound like much but it wore me out. Then I got a text from one of the women....changed my mind, other plans. Another one called 20 minutes before she was to arrive and said she'd be an hour late. I ended up cancelling and going in my room to watch TV at 6:30.
 

Ken15

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But if there were a cure that was to help me, I would need it now, not 3, 5, 10, or 20 years from now. And even if it were available now, it would have to restore a significant % of my functional losses, or I wouldn’t want it. So I’d say the likelihood of that coming out in time to help me is pretty much zero.
Karen,
Without trying to give anyone false hope, many here know of Dr Bedlack from Duke University. He has been running a study of 38 confirmed "ALS Reversals" since 2018. According to this NEALS webnar, the study hasn't found a definitive common thread among these "reversals", but he is intrigued enough about curcumin, to launch a Curcumin Trial some time this year. He is recommending a specific product and dosage - Theracurmin by Integrative Therapeutics, 1 capsule 2x per day; available from Amazon and other sources. I've captured a few salient slides below;

Ken
ROAR_Curcumin.PNG
ROAR_Curcumin2.PNG
ROAR_Curcumin4.PNG
ROAR_Curcumin3.PNG
 

KarenNWendyn

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Ken, I tried it for a while. It didn’t slow my progression. I stopped it because it was one more thing to take. So right now, I find such suggestions irritating. I know you’re trying to help. Sorry to be a Debbie Downer.
 

nona

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I tried it for a year as well with no noticeable results.
 

Ken15

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Karen,
No problem. It's not like there is an overwhelming preponderance of evidence here. Just thought, because of the credibility of the source, it would be appropriate to post.

Ken
 

lgelb

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This is not the first "reversals" trial from Dr. Bedlack's group. The last one was Lunasin, which didn't pan out.

But since this is the rants section, I'll go on to say, I'd like to see a few trials and other initiatives that look to optimize what we have to offer now. We see too many tubers on corn syrup-based formulas, BiPAP users with settings way too low or high, inadequately-fitted or equipped power chairs, etc. These things can and do affect survival time as well as quality of life.
 
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