Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 First, make sure you report this Dr to the hospital board and anything else he is connected to. Do not let this go. Explain as simply and completely as you can and be careful about the emotional part of it. Sometimes that will only trigger a response as a nut case and may not get a legitimate answer. Also, contact your neuro right away and explain to him what took place and ask if he could run some interference for Jeff to find out what he feels needs to be done. Then contact the person who did the work-up before and tell them how much you appreciate the professional manner in which they handled the whole matter and how much you appreciate the fact that they were there for Jeff. That will help validate what really took place. There is NO excuse for the way Jeff was handled. Make sure no one else ever has to deal with that attitude again. After all, it was your neuro who sent Jeff back to Houston because of his increased symptoms and it was your neuro who wanted Jeff to go. Also, I would not let Jeff travel for another appointment without you being there after this. Make arrangements and go. You will need to make sure all records are taken care of and recorded. After this, I don't think Jeff is able to handle the stress. I also need to say, I feel Jeff should not be allowed to continue to drive under any circumstances. The chance of him going to sleep, mis-judging signs and signals is very evident but think about him killing a child or a family due to his inability to function. It would then be you and your family who would pay the price of knowing that it happened and the courts would be able to charge you with neglect because you didn't stop him. That isn't something you want to be responsible for. Please think about this, tell Jeff we all understand and this disease isn't easy for anyone to accept. He has the right to be angry and frustrated but it will do more damage turned inward. Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 First of all, thanks to EVERYONE who was so responsive and supportive. Jeff went to his PCP today and told him everything that happened. He also told him about all the advice and responses from the support group. His doctors here are hungry for knowledge on this thing, and want as much info as possible. So, in another posting, I'm going to write down a list of meds that Jeff takes to make sure they are not at odds with each other. But I thought I'd let you all know that Jeff's PCP ordered a sleep study for him. He's going to the hospital Monday night to have it done. Will keep everyone informed! M. Re: Jeff Maciejewski> First, make sure you report this Dr to the hospital board and anything else he is connected to. Do not let this go. Explain as simply and completely as you can and be careful about the emotional part of it. Sometimes that will only trigger a response as a nut case and may not get a legitimate answer. Also, contact your neuro right away and explain to him what took place and ask if he could run some interference for Jeff to find out what he feels needs to be done. Then contact the person who did the work-up before and tell them how much you appreciate the professional manner in which they handled the whole matter and how much you appreciate the fact that they were there for Jeff. That will help validate what really took place. There is NO excuse for the way Jeff was handled. Make sure no one else ever has to deal with that attitude again. After all, it was your neuro who sent Jeff back to Houston because of his increased symptoms and it was your neuro who wanted Jeff to go. Also, I would not let Jeff travel for another appointment without you being there after this. Make arrangements and go. You will need to make sure all records are taken care of and recorded. After this, I don't think Jeff is able to handle the stress. I also need to say, I feel Jeff should not be allowed to continue to drive under any circumstances. The chance of him going to sleep, mis-judging signs and signals is very evident but think about him killing a child or a family due to his inability to function. It would then be you and your family who would pay the price of knowing that it happened and the courts would be able to charge you with neglect because you didn't stop him. That isn't something you want to be responsible for. Please think about this, tell Jeff we all understand and this disease isn't easy for anyone to accept. He has the right to be angry and frustrated but it will do more damage turned inward. Sally If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 , Remember that we are NOT doctors here. I have asked our doctor about seeming " conflicts " with meds and she told us that they have to sometimes give meds that are seemingly " at odds " for temporary conditions. It is especially bad with MSA and temporary heart conditions caused by infection. While it is always good to question the doctor about seeming conflicts, listen carefully to the answers and follow the advice of the doctor, not us. They may have a very good reason for giving conflicting meds. Take care, Bill Werre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2002 Report Share Posted March 10, 2002 Greetings & Jeff! It's wonderful news that Jeff has a sleep study scheduled ... and for so soon. Most sleep labs are booked well in advance. Now, what to expect? Well, I've provided a few links below, but basically, the sleep center will need to record and analyze a ton of data about your sleep behaviors. For instance, they will need to record: EEG activity EKG activity Nose and mouth breathing activity Chest movement (for breathing) Blood Oxygen Saturation Possibly leg / foot movements Sound / Visual recording Unfortunately, this usually means you will be wired every which way from sundown. It takes a bit to adjust to it, but you can get to sleep with all the stuff. Trust me. If you want to solve it, you just work at relaxing as much as possible. I like to read myself to sleep. Most sleep labs want to you stick to your normal routine as much as possible. Why all of this information? Well, they need to record the EEG activity to determine the stage of sleep you are in. They also keep an eye on breathing activity (such as lung movement) and see if breath is actually moving from the nose or mouth. If not, it's an obstructive apnea event. You get the picture, it's all very complicated. But they gradually build up a picture of what type of sleep problem Jeff might have. Here are a few pointers that go into more detail: http://www.sleepcenter.org/about/expect.html http://www.cheshire-med.com/programs/sleep/study.html http://www.emedicine.com/neuro/topic566.htm The most common treatment for obstructive sleep apnea is use of Continuous Positive Airway Pressure. This device helps splint open the airway by increasing the pressure in the airway. It works. It has been a godsend for me. Nothing less. Yes, it takes some adjustment, but it can be done. Hope all this helps. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
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