Guest guest Posted January 8, 2011 Report Share Posted January 8, 2011 Thanks. Her neurologist is out of town. She went to her primary who told her it was a herniated disk. Not sure I am buying that. What does OH stand for? I Coathanger pain does possibly sound like what she is descibing. Thanks for your response. > > > > Thanks to those who replied to my first post. Haven't had time to reply...I know you can all relate. My mom was just dx'd and we are still in the the learning stages. She lives alone, 1500 miles from here. She is doing reasonably well. Today she is telling me she has significant pain in her spine from her neck down to her tailbone. She thought it was related to a rotator cuff tear/bone spur that she has but her orthopedist says it isn't. She can't get ahold of her neurologist. She is calling her primary now. > > > > Pain hasn't been an issue per se, but she has had fybromyalgia in the past. She is starting to get a headache. Related or not related to LBD. She isn't on any meds yet and not sure what if anything she can take for pain at this point or if she needs to be seen by someone ASAP. She is going to go to her primary, but not sure that is the right place or not. The one thing I have picked up from reading here is to not take any meds without checking first. We'll need to know what to do to manage this " episisode " as well as how to confirm that the ansesthesia and pain meds for upcoming rotator cuff injury. > > > > Thanks. I appreciate the information that is shared on this board. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2011 Report Share Posted January 8, 2011 , Thanks for taking the time to respond. It is much appreciated. Let's see..my cousin (my mom's nephew) lives nearby. He isn't of any help, but his wife has been wonderful. No one else is nearby. Unfortunately, my mom's brother (and this nephew's dad) has started experiencing hallucinations hand has rather quickly taken a turn for the worse..so they are also dealing with this. So far, they have been told that his dementia is a result of alcohol abuse, but they are still researching. They also have a serious problem on their hands so I can't ask them to do too much. The Dr apparently has suggested meds before in the past. Generally my mom doesn't take meds. Until now, for most things we try to treat with homeopathics, herbs, etc. so she has some " innate " resistance to taking anything. I think she is willing to do so now given the seriousness of the situation though. I was concerned about her taking them and being alone in case she had a reaction. What do you or others who have been through think? Not only am I afraid of a reaction, I am not sure whether she will remember every day or forget and take an extra dose. I am thinking I will fly to where she is so she can have her surgery, stay for a bit to meet with her neurologist and get a script and have her start when I am there. Since she'll be in a sling for 6 weeks from the surgery, I'll have her fly home with me so I can help and watch her for a while. We'll just have to make some decisions then and see what we places, resources etc we can find here so we can make it more permanent. Any other thoughts, advise, etc is much appreciated. I am in the Austin, TX area if anyone has personal experience with Drs or facilities here. Thanks again. > > > Hello Barb's Daughter > > It is very hard to take care of these things when you don't live close to your mom. I may have missed some of your posted info but does anyone in your family live close to her? You said she was recently diagnosed but is not taking any meds. Was the dx LBD? Which Dr made the dx? It seems unusual that the Dr didn't prescribe something like Aricept or Namenda immediately with a dx of LBD. Aricept elimated my mom's hallucinations quite quickly. > > Anyway, since you live so far away from your mom and her doctors I would recommend signing the appropriate paperwork with all her Doctors which will allow them to discuss her medical issues with you. She will have to sign the papers also. I live in CA and we have all kinds of HIPPA rules regarding privacy etc. I would also recommend signing this paperwork with her insurance companies also. If she is attending these Dr appointments alone you cannot depend on her to tell the story straight, reveal the whole truth, or not make something up. Since the beginning of this journey with my mom I have had to slip the Dr a note giving him an update with every visit. If he had been depending on my mom for info there wouldn't have been one shred of truth in anything she had to say. It is also very important that all of her Dr's have all the info regarding her LBD dx and in some instances you will have to educate them regarding which meds she can or cannot have. You must be very proactive. > > Yes it seems that you are going to have to somehow get her closer to you. It is all very stressful. When I look back on all I have had to do regarding my mom's condition I sometimes don't know how I got through it but we must forge ahead and do what needs to be done. I wish you luck. Don't be afraid to use the group there is so much useful info here. > > Hugs to you > & Mom Ginny dx 2006 recently gone to board & care home > > > > > > = > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2011 Report Share Posted January 9, 2011 (went to wrong email - see below) Subject: Re: Need advise ASAP To: LBDcaregivers-owner Date: Saturday, January 8, 2011, 3:41 PM OH = orthostatic hypotension > > > > Sounds like she needs to see a neurologist who is a pain specialist. > > > > The headaches could be " coathanger pain " that is related to orthostatic hypotension (severe drop in blood pressure upon sitting up and upon standing). Does she have OH? > > > Quote Link to comment Share on other sites More sharing options...
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