Guest guest Posted September 17, 2011 Report Share Posted September 17, 2011 Hi Marcia Thank you for return post on my questions about the removal of the Meds! It's curious that you r going through the same thing with your husband ! My mom also continues to eat although not as much as before ! As little as 6 mos ago she was still a rather good eater - although assometimes needed to be fed ! Now she eats less and more soft foods or soups !! I don't see an issue with swallowing yet! As far as the removal of the Meds seeing that she looks more alert now and after a long review with the neurologist I wonder if some of The Meds actually made her worse ?? I guess we will never know the answer to that but this message certainly should be an alert to others in the group to be careful about all Meds with Los with lewy !! The hospice nurse actually called me today - on Saturday - surprising to further acknowledge the positive affect thus far from the removal of the Meds - and now it's just a matter of watching what comes next - or to stay tuned ! I can't say Enuf about advanced directives and we are fortunate that our mother's written in 2008 when she knew what she was up against are very clear and make these decisions easier for us !! The clear team and family wish following moms directives especially now as mom is on home hospice is that the only meds to continue are the ones to keep mom comfortable ! I I am curious about what the excellon patch is doing for her ?'! Unlike many in this group we actually think moms deep decline about 2 yrs ago was followed by the beginning of the patch !! Marcia - thanks again for your comments - does the hospice team have a prognosis of how mich time your husband might have left ?? Judy R. Strauss LMSW PhD Lead Faculty University of Phoenix Jersey City Campus 100 Town Square Place |Jersey City, NJ 07310 Cell- Email- Jrstr@... > Hi Judy, > > My husband seems to be in a similar condition as your mom. We have > removed a number of medications, but the only one, specifically for his > condition, was the exelon patch. Amazingly he seemed to improve cognitively, and, > this was noticed by the whole family. Unfortunately, this improvement > lasted only a few days, and, of course, we can't be sure if the improvement was > due to the removal of the patch, or, LEWY, itself. He is now on a > continual downward slope, also in the care of home Hospice. Although he has lost > all ability to care for himself in any manner, his weight has remained > stable, still loving to eat...although having to be fed....a cruel, unrelenting > disease, indeed. > Marcia C. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2011 Report Share Posted September 17, 2011 Hi Cheryl Thank you for writing me !!' I am so grateful to have you and the others in this group as well or I know I would go mad !!! As far as your mum's memory I think she seems to retain long term memory - her old friends - but has lost more short term memory I.e. The great grandchildren You r fortunate she has any memory and some cognition The most tragic part for our family has been my mom's complete loss of all her faculties - and strikingly enuf just at the rate her neurologist predicted When I brought her last to see the neurologist at Columbia Presbyterian ( they have a huge parkinsons / movement disorders department - that was may 2010 - mom was walking with a walker - had sustained several falls and we only detected balance issues The doctor told me privately that mom had LBD and to make her comfortable at home - never bring her back to the hospital and prophesied that within 1 yr she would no longer be walking , talking and have full blown dementia and further predicted that within 1 and a half years our beloved and loving mom would be close to the end ! When I relayed this to out family Noone believed someone could so rapidly decline !!!!! So far the doctor has been to our tragic dismay exactly correct ! When I spoke to the doc this week she was reviewing moms records and suggested thAt in hindsight mom probably had LBD way before even 2008 when we got to this center after seeing a regular neurologist for many years thinking mom had parkinsons The clue that it was not straight parkinsons was how rapidly the dementia and other symptoms moved along !! What bothers me now is that I saw the most rapid decline after the start of the excellon patch which was in may of 2010! I know it's crazy thinking but I somehow think the excellon patch was the beginning of moms comming to this Terrible place ! I am curious to see what will happen if and when they reduce that damn patch !! Again god bless this group - this is a dreadful and unrelenting disease - In our case is also taking it's toll on me as the secondary caregiver - i am fortunate ti have a supportive husband but it's like my own kids and grandkids can't have their mom and granny anymore since I have been so wrapped up in moms care over the last many many years !! I also think most of my friends have vanished to a degree since this ugly LBD is just not pleasant to hear about - and somehow all conversations come back to my heartbreak about mom!! So .... Forgive me if I have been needy here in the group - but how can anyone else but you good people understand ?!!!???? Judy R. Strauss LMSW PhD Lead Faculty University of Phoenix Jersey City Campus 100 Town Square Place |Jersey City, NJ 07310 Cell- Email- Jrstr@... > Hi Judy, > > My mum is in a NH and has been having her up and down periods. When she had her last down period about three months ago, my brother and I decided with her Dr to take her off all medications except for stalevo (for the shakes in her hand) and we have been amazed at how well she has coped with it. We have been lucky in that she still knows the family and old friends (she had her 80th last weekend and we invited two of her oldest friends, neighbours and family and she knew everyone. The funny thing is she remember all them but can't remember her great grand childrens names.) She keeps wanting to go to the shops to get panadol, it seems to us she thinks this will cure all her ails. > > This is a very horrible ride to be on with our LO, you always seem to be at odds with yourself. Half of you wanting to end for both your LO and for your self, the other half not wanting to loose your LO. > > If it wasn't for reading these posts there are times I think I would go crazy. > > cheers > > Cheryl > > > > > > > Scientists studying alpha-synuclein, the protein involved in Lewy body dementia and Parkinson's disease, have found that in its natural, healthy state the protein has a radically different structure than previously thought. This new insight is significant for understanding both how the protein functions normally and how it becomes altered in disease like LBD and Parkinson's. > > > > > > article: > > > http://www.eurekalert.org/pub_releases/2011-08/hms-nct081211.php > > > > > > video: > > > http://www.eurekalert.org/multimedia/pub/34988.php?from=191718 > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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