[davebahm]

Hi All,
I've been hesitant to post due to slow progress, but I have a few more questions for those who have the pump. First, did you have outpatient P.T. or were you admitted for more extensive P.T.? My neurologist wanted me to be admitted nearly three weeks ago, but thanks to red tape and Medicare bureaucracy (even though I'm not a Medicare patient) I was rejected. I am currently doing three hours a week outpatient. There's still a chance I may be admitted, and reluctantly I am realizing that would serve me much better and get quicker results. I've been taking steps sideways up and down the ramp in our garage almost every day (usually 12 trips total on a 10 foot incline, hand rails on both sides), and my wife stretches me every night.

Second, are you significantly weaker when you wake up in the morning? My wife still has to help me out of bed, and it takes me a few minutes to walk 15 feet from the bed to the toilet, then to the shower. Prior to the pump, I was weak when I got up, but I could move my legs and get out of bed, and walk much quicker and stronger. Do you think it's due to the Baclofen and me lying down? It takes me nearly an hour to get my "normal" strength now, which is still considerably less than before the pump. I can't dress myself anymore, I can barely lift my leg into the shower, and I can barely get myself out of the car (went back to work last week, part time).

Also, I am having minor bladder control and sexual problems. My wife has been so patient and understanding. Nearly everything I do seems like it's in slow motion with the exception of driving. Yesterday I had a close call in traffic, but my reaction time was right on and everything was fine. I was kind of thankful for the test.

Overall this sucks! It's nice that my wife and P.T. can do beneficial stretching with my legs and arms, and we're purchasing a mat exercise table for stretching here at home, but we didn't realize how much I actually relied on the previous spasticity. The pump was increased recently from 100 to 115 micrograms per day. Oh, I fell down and hit my left upper ribs a week ago, due to weakness and losing balance. I've hit my rbs many times (before the pump) and the pain gets very bad, but it has been much more difficult this time with the weakness. I've been using a lot of Ibuprofin to take the edge off the pain and am feeling less pain daily.

My emotions and thoughts have been a roller coaster. I want to submit art and/or an essay for Medtronic's contest, but right now it would not be a pretty picture. Sometimes I have felt like I can't do this anymore and would rather die. Not that I would do it, but my mind does go there. I guess it's good that I did this now at 38 and not wait another ten years, because it would probably be even more difficult then. Still, I am having a harder time each passing day convincing myself this surgery was the right thing to do.

Thanks for allowing me to vent. This has been much more difficult than I imagined.

Dave

This post has been edited by davebahm: 29 July 2006 - 05:39 PM

[Lillehammer94]

Hi Dave,

I can't tell you how many e-mails just like this one I sent to my friends in the early stages of my recovery. Hey at least you are talking about how you feel and being honest.

I think the adjustment to the pump is especially difficult for those of us who are ambulatory because we had good function before and now we must adjust to being weaker and build back up to being stronger. It was for me the slowest and most challenging rehab of my life taking two years in P.T. to complete and there were days when I was overwhelmed and discouraged and wanted to quit. In reality though the emotional pain of giving up was more than the physical pain it took to keep going and so I pressed on. Eventually I had to settle on a compramise dose, high enough to relieve some spasticity without losing too much tone to function.

The early weeks of my rehap were esecially slow and it took me a couple months to be able to walk a few steps, I was very frustrated. One thing that really helped me was three PTs who took an interest in what I was doing. If you can just find one person like that it can makee a huge difference. I only ever did outpatient PT and had a lot of time to devote to it as I only returned to school last year.

I don't recall being especially weak in the morning, I was just weak all the time but I don't think its unusual.
I think you are doing fantastic with your walking but I know how you feel, that there has got to be more to life that just stretching. It may seem things will go on forever like this and you are right it totally sucks. The question is whether or not you will decide to stick with it and ride out the tital wave but just know that if you decide you can't handle it that it is okay too.

I think that a little honesty and reality might be good for Medtronics contest. Experiences like yours and mine are what no one can tell you before hand because everyone reacts to the pump differently and I didn't want to go into a bunch of aspects that were true for me but may not be true for you. Its tough too because there seems to be only a handful of people experiencing the rehab like this.

In truth, PT at this point is not rehabilitation but habitation because we are learning a totally new way to do the same skills.

Hope you find this at least a little bit encourageing,
Gretta