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  • #46
    Originally posted by willingtocope View Post
    I'm sorry...I didn't mean to come off that way. what I'm trying to say is this....

    After I went to the Mayo, and they declared I had PPMS, they sent me to Univ.Of Iowa Hospital for rehab, along with a "don't expect to much". Before I could get rehab, I had to meet with UofI's head MS doc. Since it was such a huge place, I was carted around in a wheelchair...the MS Doc didn't even ask me to stand (I could still walk at the time).

    He says..."well, the Mayo says PPMS...I looked at the pictures...I'm willing to say its not quite that yet, so lets call it SPMS. Doesn't really matter, I can't do anything for you. I've got 25 year olds to treat. Come back in a year. Learn to live with it."

    I don't give up that easy. I'm tackling each new challenge that comes up...but...I'm not going to roll over and look for a nursing home.

    No one said anything about a nursing home. Actually, I am trying to keep you OUT of a nursing home. The more you tell us about your situation and your lack of support, the more borderline we realize you are...

    So you never got rehab? The doctor never sent you to rehab? Well if they did, you need more. Go back. I'm sure your primary care doc will write you a prescription if you don't want to see the neurologist again.

    And the neurologist actually said that to you? Did your report him? I find it hard to believe he said something so clearly cruel and discriminatory, but if he did you certainly must report him.

    Of course you need a doctor (probably two... physiatrist and neurologist) that you have faith in that wants to fight for you. I hope that you can find this, but I realize that will be very hard in your small town.

    But even more important - you need rehab, you need to optimize your house, you need to find a physiatrist (or a geriatrician) to get your medications optimized and to follow you more regularly, and you need to get as strong as possible.

    Remember, this is a marathon. A person your age who has to call an ambulance a couple times in the last 2 months to help them get out of bed is unfortunately in a very tenuous situation.

    You can do this. You can make things better. But you are at a time in life when everyone should be re-evaluating how/where they are living and this is not giving up. This is called being smart, and planning for the future.

    Again, my father doesn't plan either and is stubborn like you. But of course, stubborness is a good trait to have when you are dealing with a chronic medical problem. It keeps you spunky, keeps you looking for care and good doctors, and at times... it keeps you going.