Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 OK - few things... * I will be PATIENT with posting - and not post anymore same posts... * I want to send good vibes to all of you - I'm new and eventually will reply to your situations - but haven't sunk my teeth into this board yet - need to read more... * I'm not as experienced as most of you - since I'm new to this disease - so instead of advice I send to you all my good thoughts and best wishes... * Gail - my condolences to you - I'm happy to hear you were able to see your dad... * Mom's biopsy is not until Monday, 2/6 now - she'll go into the hospital today (2/3) and receive a number of tests over the weekend before they attempt the biopsy - good, they're being cautious... * Call me crazy - but I made a necklace out of a name badge & lanyard that reads " Possible Lewy Body Disease Patient, anesthia = propofol, sedative = versed. " (goofy - but I can't be w/ her the whole weekend - so want to cover all my bases...) * My gut still tells me LBD - but this other diagnosis (cerebral vasculitis) could be treatable - so that is why I'm attempting this brain biopsy to find out... I'd feel more guilty if after the fact it turns out she had a treatable disease and we didn't do anything. If she progressed similarly to the rest than I wouldn't attempt - but b/c of the rapidity of her situation, it could be something entirely different... * Visited mom last night and she didn't cry (she usually cries when she first sees me at every visit) I guess the anti-depressants are kicking in... Good.. * DC = I'm considering going to this - will be sure to make my decision by 2/8... My best friend lives in DC, maybe I'll make it into a visit w/ her as well... * I do have one piece of advice - the one thing I've done for my mom that I feel is very positive for her is finding someone who does geriatric massage & music therapy. Check out the site www.compassionate- touch.org to find someone near you... I definately see a difference (for the better) between the beginning and end of a her one-hour session. Mom keeps kissing the therapist's hand at the end - she loves it... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 WOW! It posted immediately - something must have changed in my preferences (or something) - instead of it reading " message to be approved " it read " message posted " ... Cool beans! Thanks to whomever fixed the problem... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 victoria, first of all even though you are new to the board, your opinons are welcome. as we all have to learn and you may have gone thru simliar experiences or have ideas that are useful, so just becuase you are new, dont feel you cant have answers to questions, but if you are unsure or someone else has already answered the question i personally well not respond unless i feel i have something relevant to add. also please be sure to post biopsy results the name badge thing was wonderful idea, high 5 to you my friend great idea!!!! from your other posts i tend to agree that she seems more lbd than vd, one of the doctors at teh sympmosium in ft lauderdale in jan, that carol had organized, discuseed this same issues vd vs lbd, when the dvds are done it will be announced on this board i am sure, you may request/buy a copy and learn alot, even though dad is gone, i learned more about lbd and have more info to pass around. hugs sharon m -- 's Mom OK - few things... * I will be PATIENT with posting - and not post anymore same posts... * I want to send good vibes to all of you - I'm new and eventually will reply to your situations - but haven't sunk my teeth into this board yet - need to read more... * I'm not as experienced as most of you - since I'm new to this disease - so instead of advice I send to you all my good thoughts and best wishes... * Gail - my condolences to you - I'm happy to hear you were able to see your dad... * Mom's biopsy is not until Monday, 2/6 now - she'll go into the hospital today (2/3) and receive a number of tests over the weekend before they attempt the biopsy - good, they're being cautious... * Call me crazy - but I made a necklace out of a name badge & lanyard that reads " Possible Lewy Body Disease Patient, anesthia = propofol, sedative = versed. " (goofy - but I can't be w/ her the whole weekend - so want to cover all my bases...) * My gut still tells me LBD - but this other diagnosis (cerebral vasculitis) could be treatable - so that is why I'm attempting this brain biopsy to find out... I'd feel more guilty if after the fact it turns out she had a treatable disease and we didn't do anything. If she progressed similarly to the rest than I wouldn't attempt - but b/c of the rapidity of her situation, it could be something entirely different... * Visited mom last night and she didn't cry (she usually cries when she first sees me at every visit) I guess the anti-depressants are kicking in... Good.. * DC = I'm considering going to this - will be sure to make my decision by 2/8... My best friend lives in DC, maybe I'll make it into a visit w/ her as well... * I do have one piece of advice - the one thing I've done for my mom that I feel is very positive for her is finding someone who does geriatric massage & music therapy. Check out the site www.compassionate- touch.org to find someone near you... I definately see a difference (for the better) between the beginning and end of a her one-hour session. Mom keeps kissing the therapist's hand at the end - she loves it... Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Hi So glad to hear some good news about your mom. It is a slow come back. She may not be quite where she was before. That is the nature of the beast. But at least she is progressing in the right direction. We will continue to pray for you both. Dena --- octoryrose wrote: > Thank you. Visited mom yesterday. Yesterday was her > last day of post > surgery meds. Yay! Now looking forward to her > returning to where she > was before the surgery. She opened both eyes once, > yesterday. She > cried (that's positive in my mind, b/c it's closer > to where she was > before surgery). The " compassionate touch " therapist > did her thing > yesterday. Mom's left foot is twisted and by the end > of her session > it was straight again - I know it's temporary but > it's good > nonetheless. Once we give mom a break from the > drugs, we'll introduce > her slooooowly to the meds to help LBD. First she'll > go back to > seroquel. Then is the anti-depressant - b/c before > surgery her most > frequent emotion was crying. And believe an > anti-depressant will help > her. What is the most common anti-depressant used by > your LO's with > LBD? Want to begin to get these symptoms treated > right the first > time... Then, a med to help her parkinson-like > symptoms might be > beneficial (maybe not, b/c she's so far along now) > but it's worth a > shot. Then a dementia med. But again. Slooooowly and > one at a > time.... > > Her nurse Yolanda is a miracle worker with feeding > mom. She has been > instrumental in getting the food into mom. She has > all these tricks. > Since mom is having better luck drinking vs. eating > right now, > Yolanda make a drink of her milk, mashed potatoes, > squash, etc. - > sounds gross and mom probably hates it - but she > ends the " meal " with > ice cream, so it ends well. > > > > > > HI , > > > > Isn't it awful all that our LO's have to go > through. I'm praying > for > > her speedy recovery and that ice cream will go a > long way to help. > > Courage > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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