Page 2 of 3 FirstFirst 123 LastLast
Results 11 to 20 of 30

Thread: Time to vent...

  1. #11
    Senior Member willingtocope's Avatar
    Join Date
    Jun 2010
    Location
    Pleasant Hill Iowa
    Posts
    1,097
    So, the ID guy at least goes to www.cpnhelp.org and reads "some" of the info there. He calls me this morning and says "Its kind of beyond my knowledge, but I did pass it on to our MS specialist. Why don't you go see him...."

    Okay, yet another doctor....

  2. #12
    Senior Member willingtocope's Avatar
    Join Date
    Jun 2010
    Location
    Pleasant Hill Iowa
    Posts
    1,097
    I know I said I was going to keep on fighting, but I'm right at the point where I'm wondering which fight. Keep looking for a "cure" or learn to live with it.

    Last week, the OT from one organization brought a power chair to my apartment. Getting in and out was a bit of a challenge, but i'm pretty sure I can master that. The ease with which I could zip from room to room was delightful and ii can actually get to the bathroom sink and my computers without fear of falling over. Jusr need to see what my insurance will pay for...

    Friday, a PT visited and we went thru some "move you legs...do some sit ups". Saturday, my legs still won't move, and my muscles hurt. I know my legs are atrophing from disuse. Walking (shuffling with a wheelator) is getting harder and harder. Insurance is balking because I went thru PT six months ago and "platuaed". If they don't pay for PT, they won't pay for home aid to get me an occasional shower. Whoopee...

  3. #13
    Senior Member willingtocope's Avatar
    Join Date
    Jun 2010
    Location
    Pleasant Hill Iowa
    Posts
    1,097
    Next verse. So, the PT has been "discussing" with my insurance company whether or not they will pay for home PT. "No", they say, "he's platued".

    At the same time, the powerchair people have been talking to the insurance company. 'probably", they say, its just a matter of figuting out which whistle and bells.

    So, PT calls to tell me that insurance says once I get the powerchair, they will authorize PT visits again.

    What am I missing? my legs are extremely weak because I ca't exercise without help...so, I get a powerchair to help me move around the building...then I can get PT to help me strengthen my legs so I can walk withou the power char. Right....

  4. #14
    What is your insurance? Are you on Medicare? Do you have a secondary insurance from your employer?

    I have found that if you have a PT willing to fight/appeal, then you can often get more PT. You just need to figure out some reasonable goals... what needs help.. what has gotten worse. And you need that helpful PT!

    You haven't plateaued.... you have declined again (a lot of things have happened for you in the last 6 months) and you need to return to your prior baseline. You have a new living situation and need PT for safety to work on all your transfers in your new apartment. You are getting a new wheelchair and need wheelchair training.

    Unfortunately the wheelchair will probably take many months to come. The PT that you will get then will be for wheelchair training (officially).

    So you need is someone (PT, doctor) willing to fight for you and push the insurance company. And you need to fight for yourself if they are lazy.

    By the way, there was recently a big lawsuit against Medicare/the government that was settled last year.

    http://www.nytimes.com/2012/10/23/us...ents.html?_r=0

    The jist of it is that PT should be covered by Medicare for maintenance, for people with chronic conditions (like MS, SCI etc..) that need ongoing PT to prevent decline.

    The article says .... Medicare will pay for such services if they are needed to “maintain the patient’s current condition or prevent or slow further deterioration,” regardless of whether the patient’s condition is expected to improve.

    That is a huge concession by Medicare, which in the past would not cover maintenance PT. And if Medicare has made this concession, then private insurance will eventually have to follow. You can mention the lawsuit in any appeal letter.

    My father is doing PT at least 1-2x per year. By emphasizing how this actually SAVES your insurance company money can help. More PT means fewer falls, fewer trips to the ER, fewer hospitalizations.

    That being said, it is likely you will need to start paying out of pocket for your home services in the near future. Then probably once or twice a year when things are worse, you can qualify for a round of insurance paid home services.

    Sorry these things are so hard... It really stinks.

    Are you still working? Maybe it's worth talking to Vocational Rehab and emphasizing to them that you need help/therapy to be able to continue working.

    I must say I am very impressed with your drive and strength.

  5. #15
    Moderator jody's Avatar
    Join Date
    Jan 2004
    Location
    east o the southern warren
    Posts
    8,530
    My doctor noticed I had a lot of clonus on my visit a couple days ago. she said why don't you try a small dose of vallium for that? Iv been reluctant to take more of something to be dependant on, but she said it won't hurt to try it. It was pretty bad that day.

    My script says clonazapan. I looked that up and it says it is klonopin. so is klonopin basically vallium?

  6. #16
    Senior Member willingtocope's Avatar
    Join Date
    Jun 2010
    Location
    Pleasant Hill Iowa
    Posts
    1,097
    68. Still working 8 hrs a day. WellMark thru work is primary,,,Medicare Part A secondary. WellMark hasn't caught up with Medicare as yet, so I think you're right that as soon as I get the powerchair, they'll consider PT as "training" for dealing with that.

    Voc Rehab is a thought I'll pursue next week. They did help me get a wheelchair van two years ago (which is for sale, sitting out in the parking lot since I lost my driver). since I'm still working, they won't pay full price for DME, but they might help. Thanks for the suggestion.

  7. #17
    Senior Member willingtocope's Avatar
    Join Date
    Jun 2010
    Location
    Pleasant Hill Iowa
    Posts
    1,097
    Quote Originally Posted by jody View Post
    My script says clonazapan. I looked that up and it says it is klonopin. so is klonopin basically vallium?
    no, don't think so. I take clonazapam for "essential tremor", which I don't think is related to clonus. My MS doc RX'd Zanaflex for clonus (which I also take).

    I just looked it up on wikipedia, so I guess i'd have to say maybe:

    http://en.wikipedia.org/wiki/Clonazepam

    And, oh yeah, it is addictive. I've been taking it for about 16 yrs now. I've try to ween myself off, but the "anxieties" creep up on me pretty quick.
    Last edited by willingtocope; 04-20-2013 at 01:29 PM.

  8. #18
    If you get a pwr chair you may want to try for elevating seat. My wife mainly uses a manual but has a Permobile C400 bought used. This has an elevating seat with "lowrider" option. Seat goes down to 16" and up maybe to 30". This is very convenient for gravity transfers, ie., you approach toilet, raise seat above toilet height, when transferring back lower seat to 16" and transfer down into chair. Same for bed, van seat, etc. Saves energy and shoulders.

    Keep on keeping on Willing.

  9. #19
    Senior Member willingtocope's Avatar
    Join Date
    Jun 2010
    Location
    Pleasant Hill Iowa
    Posts
    1,097
    Yep...elevating seat is on the list. DME consulting nurse is trying to get it approved, but I may wind up paying out of pocket.

  10. #20
    Super Moderator Sue Pendleton's Avatar
    Join Date
    Jul 2001
    Location
    Wisconsin USA
    Posts
    11,007
    Jody, that is nothing like valium in strength. http://www.drugs.com/klonopin.html Early on the pain specialist at rehab tried that stuff on me. Did nothing for spasms or pain but upped my liver enzymes. I know several people who take it for anxiety. I take valium for spacticity and it can help some with clonus but stretching is needed too or regular use of a standing table. There really are no drugs specific to clonus unless you take enough to be comatose.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

Similar Threads

  1. Replies: 12
    Last Post: 08-20-2007, 01:16 AM
  2. I need to vent!
    By ChopperChick in forum New SCI
    Replies: 3
    Last Post: 04-23-2006, 09:05 PM
  3. need to vent again
    By okwjoe in forum Caregiving
    Replies: 7
    Last Post: 10-08-2004, 08:02 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •