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My Brother's Condition (UPDATED 6/23)



  • Perhaps going with him and talking with the PM Dr. may help if he would benefit from Physiotherapy or aquatherapy may help. My PM Dr. told me it's important to get out for a walk everyday also even for a few minutes. I did this on Tuesday and walked too far and ended up with leg cramps so best to take short walks. Even up the driveway and back just to get some fresh air.

    I hope you can find community help from Home care if you wanted to look them up and see what they can offer you with support. I hope he can find some relief soon. Going for aquatherapy has helped me a lot. My best. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Sounds to me like you need to give him some ultimatums. If you can't do that try being sneaky. Make things less available. If he can do stairs when he is hungry he can do more. Get him out to the stores a little. Another idea is to mysteriously have the internet go out to get him away from the computer.

    Bottom line is he needs to do something to help himself. And you need to make some changes so you can get your life back.
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  • The only person my brother would ever listen to was our late father. Our Dad said jump, we would jump. My brother doesn't listen to anything I tell him. He's told some of his friends when they call on the phone that I'm an assh--e for rying to make him do things. He doesn't appreciate anything I do for him.
  • Howdy DCL, sorry to hear you are going through all this pretty much on your own. I have a sister who isn't much different than what I am seeing of your brother. The advice (tough love) I have seen seems right on the money! It is kind of in line of "put up or shut up." The main reason he is being a lump around the house? YOU'RE letting him, and HE knows it. I further agree, the internet should go bye-bye, maybe the TV, and make him cook his own meals! It sounds like he is mobile enough to get around the house - without the aid of his cane! He can do some for himself.

    Also too, to be fair (for him?) If indeed he "is depressed", then yeah, some of his pain will be exasperated. So he hurts, doesn't move, gets internally bummed, hurts more? Just guessing here a little bit, and playing devils advocate a tiny bit.

    His basically calling you names to visitors, that right there, I would have booted him out. My sister is not welcome in my house for a lot of reasons. Your brother might need a shot of "reality." Sorry if I am harsh, just going on what I read in this thread. Good luck with your brother!!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Here's an update. My brother's pulmonologist isn't buying into the ALS diagnosis. He prescribed him a bigger dose of Prednizone to see if his nerves are inflammed. He changed his prescription from 5mg to 60mg for just one week. A week later and my brother is feeling somewhat better. He isn't sleeping during the day anymore. He's getting a full and better night's sleep. He still has the tightness across his chest and the tingling and numbness in his hands but he says he feels better. The doc prescribed a second week and is forwarding this information to his neurologists. Maybe things will start to look up.
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  • I am so happy to hear that he is making some progress. Keep in mind that he may have some setbacks and don't get discouraged. But this is wonderful news!!

    Is he taking any neuro drugs like neurontin? Maybe what he is calling tightness is actually nerve upset from his surgery.
  • He's not taking any neuro drugs. I honestly think that the reason he really hasn't been "properly" diagnosed is that we're not saying something "the right way." Last night he started complaing about how he is getting worse and worse everyday when on Wednesday he told me how good he was feeling. He bought some contraption to put on top of the toilet to raise him up. The thing must weigh 1 pound and he left it in the middle of the hallway saying it was too heavy for him. Then he complains about moving a suitcase and how when he feels better he tries to do too much. I told him if he got his lazy ass out of bed and moved around alittle more during the day he might actually start getting some stamina back. All that did was start an argument between us. I'm tired of being told by him that I don't care and that I don't understand what he's going through. This is the kind of thing I'm getting sick and tired of. I work a 12 hour day and I have to come home to this lazy good for nothing and catch crap. I've gone to the CVS twice this week to get his prescriptions and today I'm going to pick up his groceries. I don't see his useless daughter doing any of this and she's normally home by 4pm everyday and I usually get in between 7pm and 8pm. I guess I'm not allowed to be tired.
  • DCL its not uncommon for spine patients to have good days and bad. And the over doing it on the good days is a common problem. But I think you are right about him not being properly diagnosed.

    You really need to get him to a new doctor to get a complete workup. I tend to be cynical but there are so many doctors out there who will do anything to keep patients coming back to them. A sign of a great doctor is when they refer you to another specialist because they can help you more. Nothing worse than the ones who want to keep seeing you because they can bill your insurance.

    I would look for a neurologist in a large medical center. Most hospitals have affiliated groups and these docs are not as likely to play the insurance game. Another thought is to see about getting PT to come to the house. That way he doesnt have an excuse not to go out and the therapist may be able to do some evaluation as well.

    I like a neurologist because if he does have other conditions like you mentioned they would be able to assess these as well.

    As far as his daughter - she probably is happy to assume you don't need help. So assign her things to do. Tell her you need her to pick up the meds. Tell her you need her to do the shopping and give her the list. If you don't ask for help you can only blame yourself. Then I would keep a list of what you asked for and if she did it or gave you an excuse. That way you can go back and say "look I only asked xx number of times and you only did it xx number of times"

    My relationship with my MIL and sister in law was similar but I was on the other side. For the first few years of my marriage I offered to do things all the time and was turned down and honestly made to feel inferior. My husband saw it and said to stop asking. I did for the most part. I still offered alot especially when she was in the hospital and got the same response. At the end it came out that my SIL thought we didn't do enough. We had a bit of a fight about that but I am sure in her mind we still didn't do anything to help.

    What I'm trying to say is that if you don't ask you can't blame her. If she keeps coming up with lame excuses then you have to call her out on it. And make sure you give her enough time and some flexibility in helping. If you need meds picked up give her a few days notice so she can make her own arrangements.

    I hope this helps some. I think taking care of siblings is probably the worst because you are equals.
  • After trying an increased doseage of Prednizone and it having some effect on him, Allan's doctors are reconsidering their ALS diagnosis. Maybe someone will dig deeper and finally solve this before I do
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