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Time to vent...

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    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.


      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:

      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; 20 Apr 2013, 1:29 PM.


        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.


          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.


            Jody, that is nothing like valium in strength. 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.


              So, the MS Specialist the Infectious Disease refered me to wants no part of long term antibiotics.

              I'll keep looking...


                Alrighty then...I emailed THE guy at Vanderbilt and ask if he knew of any doctors in Iowa that could even spell Chlamydophila pneumoniae. Nope.

                But he did send a testing protocol...I'll see if the ID Doc will at least order the tests.


                  No response from the ID Doc's email. I guess I have to call...

                  And, in the meantime, I called the PT Doc's office this morning to see about getting my powerchair. I've called every week for the last 5 weeks, and got shunted off to the PT specialist's voice mail..who never called me back. So today, I talk with the secretary...she says 'oh, yeah, the doc signed the papers on last thursday, we sent them on to the DME. Its in their hands now". So, I cancel the appt I had with him for next Monday...what do I need to see him for, at least until I get the chair?

                  And then, I call the DME. "yes, we got the papers, but Medicare says we need more records from the doctor." I say, "but I've still got BC/BS thru work". "Doesn't matter...they'll want to see the Medicare paperworK'.

                  So, I call the PT doc'''s office back and explain what the DME said. "huh?", she says. "Does this mean I do need to see the doctor next week?", I ask. "Don't know, I'll ask the doctor and call you back".



                    Well, the good news is...I don't have to see the PT Doc until June...hopefully after I've got the powerchair. I hope that means they've faxed the DME people what they need.

                    The bad news is...evven though the EF Doc put Chlamydophila pneumoniae on my records, he wants no part of testing for it let alone treating it. He says I should see my PCP.


                      PCP says "NO! If the ED Doc says no antibiotics, I'm not going to get involved".

                      Time to find a new PCP.


                        Originally posted by hlh View Post
                        Unfortunately the wheelchair will probably take many months to come.
                        Damnit, you're right. After fighting the paperwork battle with the PT doc and the DME (neither one seemed to know everything the doctor needed to sign), supposedly the DME will have everything they need today...or submit to my insurance. The DME says it will take BC/BS "a couple weeks" to decide, and if they approve then the DME will build my chair.

                        So, if there are no further "yeah, buts"...I might get a chair by July.

                        In the meantime, I've found a medical group here in town that specializes in "infectious diseases in immunologically-compromised patients" but they require a referal. I've asked my PCP for a referal. If he says no, he's fired.


                          Got an email from my PCP. His practice will talk with the other medical group and see if they're interested in seeing me.


                          Hurry up and wait...again....


                            So, yesterday morning about 8:00am, we had a little power outage in my assisted living building. Couldn't have lasted more than 30 seconds.

                            But, whatever two years out of college architect that designed this place put in thermostats that automatically reset to HEAT when ever there is a power failure. So, from 8am yesterday, I had no cooling...the heat didn't actually come on, but neither did the air conditioner and it was in the 80's by 5pm. Since I still work, I was concentrating on a problem and didn't notice it was getting warmer in the apartment.

                            By the time I went to bed to watch TV around 7pm, I could barely walk, and was sweating heavily by the time I got to the bed. Since I have to call for an aide to help me get into bed, I asked her to check the thermostat. It was reading 92 degrees.

                            With MS, anything over about 75 just sucks the strenght right out of me. The air conditioner ran all night.

                            The thermostat is about 12 feet out of my way in going to bed...if I would have detoured to look at it, they would have had to pick me off the floor agian.

                            Its these little minor day-to-day annoyances that are beginning to pile up on me.


                              Got the powerchair! Remarkable! Fits in all the rooms...I can get to the bathroom sink to shave...up, down, recline. Now all I have to do is figure out how to incorporate it in my daily routine.

                              Getting in and out is a bit of a problem, but I think that's managable. Not having a flat surface to carry thing around on, or hooks to hang my grabber on...I need to figure that out. Got to put my pants on BEFORE I start work in the morning, since I'll be using my BIG computer over on the desk.

                              Where am I going to park it to charge so it isn't in the way when I need to get up one or two times a night to pee...and for that matter, how am I goiing to carry the urinal bottle around? Transfering to the toilet is going to be interesting, but at least now maybe I can gets the building aides to help me shower (hot water just destroys the use of my legs...I couldn't walker from the shower to the bed, but if I can ride, it might work).

                              Damn...I'm never satisfied. These are not major,life threatening problems, but...just not what I wanted to be dealing with at this time of my life.

                              Oh, and my PCP did refer me to the other infectious disease guys in town. I'll need to educate them on Chlamydophila pneumoniae.....


                                Wow - that's great! Congratulations.

                                Maybe you can get a couple PT visits in your apartment to help brainstorm all those issues? Just a thought.

                                Glad you have progress on several fronts. But you're right - there's always something....