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So she explained that of course core is essential. Just the word core tells us that. She's going to try and pin down how much that is 'shot' or not. And try to convince him that he has to work on it. She was describing all the things that happen when your core really is shot and some related aspects that are rather gruesome. Her Aunt also has MS and died from mucus her body was unable to simply (for most of us) cough up.
When she got to the part of needing that procedure where your #2 goes straight into a bag I was like he would probably think that is fantastic. Then he doesn't have to get up at all - don't tell him that one. Tell him undesirable consequences.
As germaine said, if he can get in the Van he isn't homebound so Medicaid isn't going to put him in his Van. She said no state agency will. But we're not wasting a lot of brain space on that anyway. He wouldn't really go 'work out' and lacking core, he can't ever keep his leg strength.
God Bless her for what she is going to do. She has 8 different ways planned to explain how there is no such thing as skipping core to just legs.
It's really nice to talk to someone on the exact same page. She wanted to put a pillow over his face last week and today she asked her co-workers if putting one on her own face would work.
(After he refused the psych eval and some other things).
I asked about OT, she said she sent OT and he kicked them out. Not a surprise. 'I just need my legs!'
She agrees OT could probably teach him how to dress himself. We'll see. Close to hitting bottom and some people bounce when they hit bottom. We discussed he might at least 'bounce' enough to realize the minimum to stay at home is more than legs. Time will tell.
Up until now there has not been anything compelling enough to do anything for himself. Now it's down to what is most critical to him: staying at home. The first obstacle there is no way around except real PT and OT or that procedure where you ish in a bag and someone empties it for you. An option that isn't going to be offered.
I have had MS for over 35 years. I need no cane, walker, assistance. Over 35 years! I have been blinded and paralyzed on many occasions but bounce back with only a little residual numbness because I get my steroids.
I have had MS for over 35 years. I need no cane, walker, assistance. Over 35 years! I have been blinded and paralyzed on many occasions but bounce back with only a little residual numbness because I get my steroids.
Your brother is a lazy, controlling phuk. Period.
You have relapsing/remitting like him then. It used to only be episodes of double vision and paralysis. I wonder now about steroids. Why I have never heard mention of them until recently my sister said they give those in the ER when he goes.
I am certainly absolutely glad for you that is all it takes, but I don't think you are in the majority. I know other people with MS in varying stages.
I don't pretend to know everything about my brother's condition either, but steroids alone surely wouldn't have stopped the brain lesions and the failing body. The only part I know for a fact is that he should have been doing PT from the time he first needed a cane, if not sooner.
I don't think you're saying he's pretending that he can't move his legs. He really is not. He can't write either. Not even a check. He can type but not write.
He HAS malingered in many ways, but he isn't making all of it up.
I've mostly 'blocked' old memories but I do remember the chair being thrown at me when my Mom was in a hospital or rehab and he started bugging my Dad over a decade ago. I think I was sent to check on him and found him asking Dad to do things like fill out his application for country health. Sometimes I think maybe he really couldn't write well enough even then and I feel a little bad but he was also saying things like their copy machine didn't work and I went to the (home) office and made a copy and was like it doesn't? I think you just want to make Dad drive over here, pick this up, make the copy for you at his office, etc. I think you just want to make people do things for you that you CAN do. And that is when the chair came at me, lol.
He is lazy, yes, and I think he has more than just narcissism going on. He wants to be taken care of like a giant infant. When the crane was described to me I was like oh good, he's being carried around like a baby like he probably enjoys. I know that sounds mean, but seriously.
It could all stem from narcissism and control, too. This is a useful means to gain control and constant attention, devotion and servitude.
But refusal to fight MS has resulted in very serious, true disability now.
He never forgets that day. He wrote on facebook a week ago that terrible people like me are always saying he could do more for himself. Well, he can. Even now. And I never stopped. I still say OT WOULD HELP YOU DO SOME THINGS. Or I did until I exited the situation. The sister can give her try at that now.
When did he go to a neurologist and have an MRI done on his brain and cervical neck? Why hasn't he been on any of the meds developed to help MS? Are you sure he has relapsing remitting MS and not progressive MS? Who told you all this info?
I am not saying he is lying but I am saying he is a pretty sick individual to CHOSE to be an invalid. I have fought for 35 years to stay as well as possible and my neuros say I have done an excellent job of it.
You need to walk away from this loser. To hell with the house. You will get it when he dies or tear it down.
When did he go to a neurologist and have an MRI done on his brain and cervical neck? Why hasn't he been on any of the meds developed to help MS? Are you sure he has relapsing remitting MS and not progressive MS? Who told you all this info?
I am not saying he is lying but I am saying he is a pretty sick individual to CHOSE to be an invalid. I have fought for 35 years to stay as well as possible and my neuros say I have done an excellent job of it.
You need to walk away from this loser. To hell with the house. You will get it when he dies or tear it down.
Well, he was definitely diagnosed with that. Can't relapsing/remitting still have a progressive nature to it? He has had many MRIs. I think he has to to keep getting Tecfidera and whatever his med was before that one. For a lot of years he wouldn't take any, because whatever was prescribed had unpleasant side effects.
I am not saying I am right about this, but from my POV it seems that if you just sit there, anyone will atrophy. But his legs did get progressively worse, again imo at least in part due to refusal to do PT.
From a cane to a walker. And it DID used to be important to him to walk. I know that for a fact. He hates being at home. He'd rather be out like most people who are not homebodies do. Going out to dinner and movies and Ranger games and to play cards and on and on.
He almost spent another 40K on stem cells last year until I made him realize it won't obtain his goal. It will not make him walk again and that is what the 40K was meant for.
He wants to meet women and gain a wife. I promise he'd rather walk he just was in a bizarre denial about how to retain the ability.
I remember my Aunt trying to get him to take medication and my Uncle trying to get him to USE the cane instead of leaning on things. Specifically for job interviews. Can't go stumbling around the office.
He is crazy, yes. Before he used a catheter there was no time between needing to pee and peeing. He'd get a big gulp every morning, the largest size, which was stupid to drink anyway, and then pee in that cup all day, keeping it in his drawer.
There must have been some better method than that. He lost that job eventually in part due to this urine problem he refused to more properly address.
Sense of entitlement doesn't begin to cover it. A lot of things appear to be direct appeals for attention and sympathy, but that urine in the office thing is just inexplicable.
I assume one can go to a store and buy something to do that in that has a nice tight cap to properly contain it rather than a PAPER CUP that probably leaked. And to trap the odor. I mean.
The only downside to filling my sister in on some history is that memories that you want are not the only ones that come up when you tap in. They all do. And she doesn't need to know the 200 similar stories like this.
The situation at hand demonstrates on its own how irrational and delusional he is and all the rest. Used to, God was going to heal him. He would sooner get taken in a stretcher to another state for a faith healing than do PT. In fact, he did that very thing 2 years ago.
By then I don't think he believed anymore. I think that was just to enjoy all the people attending to him. But I mean like a decade ago. 'God will heal me when he is ready'. Okies.
Just because he has MS doesn't mean he doesn't also have a personality disorder. Sounds like Narcissistic or Borderline Personality disorder to me.
Big time. ^^^^^^^^^^^^^^^ And then some.....using a cup to pee in and leaving it in a desk drawer! IDK what kind of personality disorder that could be but it's definitely a disorder! Ever hear of Depends, buddy?? Disgusting.
Yes, anyone's muscles will atrophy if not used. When I had quit smoking, I ramped up my walking to running. Living in horrible SW Florida now, it's too hot and muggy to even walk but I still exercise my legs.
If you take care of yourself you "die WITH MS, not FROM MS." Direct quote from more than one doctor. Progressive is a different story, unfortunately.
Just because he has MS doesn't mean he doesn't also have a personality disorder. Sounds like Narcissistic or Borderline Personality disorder to me.
YES.
Jencam. He reminds me so much of my sister (diagnosed BPD and bipolar on top of physical disabilities).
I think you're going to do what you're going to do. Like the others, I wish you'd just walk away. I don't think you're going to do that anytime soon.
Would you at least consider attending a codependents anonymous meeting in your area? Seriously you can just sit there and not say anything. Or online.
It is very very hard to break out of this cycle you're in without help. I was there in the 90s. It really did feel like a vortex. I would not have survived the manipulation without massive therapy, seriously.
Please get the help. This is NOT an insult in any way. He knows exactly what he is doing to you - and he's not going to stop. Ever.
I did not leave you that comment about the house being left to both of you but I think I get it. I actually feel like you were set up to be responsible for him with the house left to both of you. You are NOT responsible for him, and I wish you'd see an attorney about getting out of it. Your mother could have left the house to both of you but specifying in her will that it needed to be sold and proceeds split.
I'm sorry and I hope this changes for you but it won't unless you change it.
Jencam. He reminds me so much of my sister (diagnosed BPD and bipolar on top of physical disabilities).
I think you're going to do what you're going to do. Like the others, I wish you'd just walk away. I don't think you're going to do that anytime soon.
Would you at least consider attending a codependents anonymous meeting in your area? Seriously you can just sit there and not say anything. Or online.
It is very very hard to break out of this cycle you're in without help. I was there in the 90s. It really did feel like a vortex. I would not have survived the manipulation without massive therapy, seriously.
Please get the help. This is NOT an insult in any way. He knows exactly what he is doing to you - and he's not going to stop. Ever.
I did not leave you that comment about the house being left to both of you but I think I get it. I actually feel like you were set up to be responsible for him with the house left to both of you. You are NOT responsible for him, and I wish you'd see an attorney about getting out of it. Your mother could have left the house to both of you but specifying in her will that it needed to be sold and proceeds split.
I'm sorry and I hope this changes for you but it won't unless you change it.
Listen & heed this sage advice.
Plus ask for a partitioning of the assets-- right now you have an undivided half interest in a house.
He is not a nice guy. I know several people with MS & they do not act like this.
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IDK what kind of personality disorder that could be but it's definitely a disorder! Ever hear of Depends, buddy?? Disgusting.
