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Baclofen pump people this one's for you

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    Baclofen pump people this one's for you

    I work full time from home and am literally on my laptop for the entire day.

    Last Thursday I noticed my laptop was making an intermittent high pitched sound, and I know it's about time for a new laptop battery, so I basically ignored it. My husband is the tech genius in the family so I thought I'd ask him when he got home from work.

    My pump refill appt was scheduled for last Wednesday, but due to a transportation issue (it's a far trek from my house so I need a driver), I had rescheduled for Thursday.

    So now I bet you know where this is going. When they put the "reader" over the device the physiatrist looked at the info and said that the pump had been alerting all day. Voila! Mystery of the beeping laptop was solved.

    I can't believe it didn't dawn on me that it was the pump alarm...but I've only heard the European ambulance alarm, never the low dose beep alert.

    Hopefully next go...I'll be a little more saavy and realize a high pitched beep may not be coming from my laptop.

    #2
    Hi Rdmc!
    Too funny and in a way good,(since you had your appt all set) shows we don't think about the pump much.

    Early on during the first year I too had rescheduled and expected to hear the low dose alarm the day prior. It is kinda low and I didn't pick up on it right away and heard the sound interval. My only concern was that I didn't want it to happen unnecessarily again to reduce my pumps battery life any.

    Hope you are doing well and staying cool.

    Comment


      #3
      Hey BG,

      What you wrote is so true...you sort of forget the pump is there. However, I still wear a binder if I'm going to be up and about more than usual. It just feels more secure and I don't want it to try to
      migrate like it did before, around the house I'm binder free.

      Hope all is well with you.

      Comment


        #4
        Medtronic released a baclofen pump app for android and apple devices. The application will allow you to store information about your pump and play alarm sounds.

        http://www.baclofenpump.com/living/p...-app/index.htm

        Comment


          #5
          Hi rdmc,

          Glad you already had an appointment scheduled! With your history, wonder what your physiatrist first thought? I just wonder how loud mine will actually be, but hope it won't take too long to figure it out if I ever hear it. Know I could ask during my next refill appointment to hear the alarms, just never remember. The low dose alarm reminds me of my husband's alarm clock. (He also likes the snooze button .) Once (before I knew it sounded like a European ambulance) I thought the critical alarm was going off (maybe I'd been reading too many of your posts ) but no, it was his alarm clock.

          Surprised me, though, you could schedule a refill so close to the alarm date. I've always been scheduled at least 2 weeks before mine. Once, I completely forgot I had an appointment and got a rather urgent phone call I had to reschedule my appointment. It was a good thing I had a few extra days to get it filled before the alarm went off.
          Kimba

          “When you change the way you look at things, the things you look at change.” ― Max Planck

          Comment


            #6
            Hey Marco

            Thanks for the info about the app...I'll have to check it out. I've listened to the youtube of alarms before, this "beep" seemed softer.

            Kimba,

            I usually don't cut it that close. I make it a week before. This appt. was set for Wednesday, and my alert date was supposed to be Friday, so not exactly sure but technically it was alerting a day early.

            I think I would have known it was the pump if I didn't have my laptop sitting near the pump (remember my pump is living in North Dakota now, higher and nearer the center of my abdomen...the other placement was Idaho, offcenter and lower) So when I'm in a "recline position" the proximity of the laptop and pump is pretty close.

            The similar sounds from your alarm clock and the "emergency" pump alert would have put me in a panic. I've heard that alarm going off after an MRI. In every case by the time I've popped into the physiatrist's, on the way home from the MRI, it has restarted itself.

            Comment


              #7
              I decided to just resurrect this thread instead of starting a new one. I wanted to share a new discovery (well new to me anyway.)

              My legs and hips have been really stiff. I chalked it up to increased driving and being in the heat (I'm usually a vampire in the summer....but some "elder care" issues have pried me from my air conditioned surroundings into the high heat.)

              So I made an appt. with the physiatrist. Figured the baclofen needed upping (I'm at 250 mcg now, so not a low dose.) The physiatrist did a test or two and said my tone was fine, so it wasn't the spasticity that I was feeling.

              He suggested turning down the pump, instead of upping it, reduce the dose by 7% (I think that was the amount.) His theory was that since my legs are weak, and I have decreased the
              amount of spasticity in my legs, what I actually need to do is add some spasticity so my muscles
              won't be overtaxed (causing stiffness) by trying to walk with weak legs. I had never thought of it that way, and my legs have been weak...getting up is pretty precarious, first few steps are tenuous, to say the least.

              So the pump was backed down, and his theory must have been right. My legs are more flexible,
              walking doesn't feel as stiff, nor do I feel the "I could fall any moment" feeling.

              I think somebody else had to have their dose backed up (BG...was that you) I don't remember the
              reason.

              Once again the physiatrist office is my favorite doctor's office

              P.S. I had just been to my GP a couple days before for a regular check up appt (I have regular appts with them now, and I like it.) But I'm leaning to the right. My body, my head...I sort of lean like a ship wrecked on a reef...I'm "listing." My GPs office wanted me to ask about a brace of some sort to keep this from happening. Bless their hearts, I know they mean well, but I couldn't imagine wearing a brace of any sort. The physiatrist had me walk the hall and said, "Yep you lean, and you're going to lean, so try to self adjust when you can, and don't worry about it." Once again, he made a reasonable explanation of why this is happening, and why there's no real fix for it.
              I love walking out of a dr.'s appt with more knowledge than I had when I went in.

              Comment


                #8
                Hi rdmc,
                Interesting and does make a lot of sense.

                I did have my pump lowered quite a bit over a year ago and it helped my upper body weakness without negatively affecting my leg spasticity. Seems the pump needs upping to address spasticty and lowing for weakness.

                I do get some spasms inconsistently in my legs at times but overall not much, most when my PT stretches my legs and they get mad , and sometimes when i'm sleeping. But if my upper body core/balance gets weak it is tough. The last few months especially, which I'm thinking is from the summer heat. A few months ago my psychiatrist did up my pump 5% during my last refill, a small amount but haven't felt strong in my upper body since and no postive difference in my legs. Before I get it lowered back I'm waiting for the weather to cool off and see if it is due to the temperature. I'm finding temperature is becoming a bigger factor for me then it has been in the past, I feel very weak if I'm not cold enough.

                My pump dose is 106 now. I'm always surprised that most have a higher dose and don't feel weakness in other areas. I did have a higher dose around 130 for the first few years and don't remember feeling extremely weak in my upper body but did notice a good improvement after lowering and wished I had the change sooner. This is another reason I'm not convinced the latest 5% increase is the culprit.

                Glad you found out and it helped, and thanks for sharing too.

                Thank goodness for our psychiatrists!

                Comment


                  #9
                  Hey BG,

                  My pump is at T-9, so although I feel it affects portions of my back, I don't think it affects my arms. I've had arm weakness during an exacerbation, and it's a bad feeling.

                  My dose was getting up there (I think about 250) before he turned it down about 6%.

                  Funny thing is, I couldn't feel the weakness before when the pump was higher, but now that the pump's lower and the spasticity is higher, I've eliminated much of the muscle pain, but I also feel
                  the weakness more. Oh well, onward and upward...not in baclofen dosage though

                  I'll be glad for some cooler weather, which should arrive by Christmas here in Florida. I will say that this summer I ve been in the heat much more than usual. I was literally a hermit in times past during the summer, but due to some elder care issues, I have had to venture out during the day (I'm not in it long, just the time it takes from the car to the dr. office, or the house to the car)...but I think it's taken a toll.

                  P.S. If you look back at your post, your term "physiatrist" always came out psychiatrist (probably an auto correct function on your device.) I've noticed mine always wants to change the word.

                  Hang in there.

                  Comment


                    #10
                    [QUOTE=bluegiraffe;1483703]Hi rdmc,
                    Interesting and does make a lot of sense.

                    I did have my pump lowered quite a bit over a year ago and it helped my upper body weakness without negatively affecting my leg spasticity. Seems the pump needs upping to address spasticty and lowing for weakness.

                    I do get some spasms inconsistently in my legs at times but overall not much, most when my PT stretches my legs and they get mad , and sometimes when i'm sleeping. But if my upper body core/balance gets weak it is tough. The last few months especially, which I'm thinking is from the summer heat. A few months ago my physiatrist did up my pump 5% during my last refill, a small amount but haven't felt strong in my upper body since and no postive difference in my legs. Before I get it lowered back I'm waiting for the weather to cool off and see if it is due to the temperature. I'm finding temperature is becoming a bigger factor for me then it has been in the past, I feel very weak if I'm not cold enough.

                    My pump dose is 106 now. I'm always surprised that most have a higher dose and don't feel weakness in other areas. I did have a higher dose around 130 for the first few years and don't remember feeling extremely weak in my upper body but did notice a good improvement after lowering and wished I had the change sooner. This is another reason I'm not convinced the latest 5% increase is the culprit.

                    Glad you found out and it helped, and thanks for sharing too.

                    Thank goodness for our physiatrists!QUOTE]

                    Comment

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