Nikki, I was very interested in what you wrote, because you are writing from your personal experiences and sharing the results with all of us. As with a few others on this site, it's too late for us...but oh! how happy I am for you. This site should be here to share successess you and others have experienced.... and not a place for someone to post all the reasons why "NOT" to try it.
I will be driving out of my drive way in about an hour. I expect I'll be safe in my travels. I do not want to think about the chances I'll be broadsided and killed by a drunk driver in each intersection, or that I could trip and fall as I walk into Church. But why think of that. I will drive away trusting that I will reach my destination and return safely. Does this analogy make sense to the rest of you? One has to believe in positive thinking.
So, if you are being graced with the miracle of your husband's presence for a week or a month or whatever, it is a blessing and reading this today has filled my heart with joy for you. What a blessing...and maybe it will be just as effective for another person on this site. We all know that this is a terminal disease and by God! I would have been willing to try it if I had heard about it earlier. I only wish I had. Please keep sharing the Good NEWS! with all of us. Love, Nancy B*
This reminds me a bit of my experience with my mother. Her osteoporosis was so bad that her ribs would spontaneously crack and she was in a lot of pain. Her doctor would not prescribe stronger pain medication because it might be addictive. At that stage of the game, who cares if something is addictive? What difference would it have made? It certainly would have made her last few months better. Everyone has to evaluate their conditions and the possible consequences and, if possible, make an informed decision. But then again, sometimes we get so caught up in the emotion of the situation, that we have difficulty making a proper decision.
Lori, I have not experienced what you did, personally, but I have hard it said that many doctors are afraid to over prescribe pain meds to dying patients, for fear they would become addicted. I think someone needs to sit them down, take their face in one's hands, make them look you directly in the eyes, and remind them that the patient in question is D-Y-I-N-G... spoken slowly and very clearly, ... and ask why addiction should be a concern. To die in agony would be such a horrific way to end one's life. IF there is a blessing anywhere to be found to Alzheimer's Disease, it would be that in MOST cases, the end is quiet and peaceful, free of pain...their brain finally goes to sleep for the rest of eternity...and the organs follow suit.
Oh Nancy B* it makes TOTAL sense, in fact I was thinking of posting something very similar to that. Life is a risk (or as I like to say a “crap shoot”!) I like the statement you made “This site should be here to share successes you and others have experienced.... and not a place for someone to post all the reasons why "NOT" to try it. Yes we all vent here, but it’s mostly our emotions talking about our situation. I also want to hear more from Nikki about her beloved Lynn. I know she has been through a lot in her young life (compared to some of us), but for her to still radiate so much love for him is such an inspiration. Thanks Nikki!
After reading what Nancy wrote I thought of another comparison: we have those whose journey with their AD spouse still with us sharing their new journey. Some have gone on to find new love and purpose in life - others still struggle. We need to hear there is a future after AD.
We also need to hear the news like Nikki shares that there can be those special moments still out there. We realize not all will experience it, but it is a joy to hear. Other stories are like I forget whose spouse was, but they were able to cuddle as he peacefully slipped into eternity. If I remember right Ronald and Nancy Reagan had a special moment at the end too.
Special moments are what we need to hear in the midst of the horrible.
Nikki - you take every moment of this time and hold it as close as you can - you did the right thing regardless of the possible negatives. And I mean no criticism of what has been shared, as it has been said, 'if you don't also know the negatives, you are not fully informed.' I would have done it in a heartbeat--in fact I did in 1999. My husband was in the final stages, in a care facility because he'd become violent. I came across a surgery I believed would work, took him to Germany to have it done because the powers that be in the US do everything they can to stop it. I don't know why. And, yes, I knew it might not work, but what was the alternative? The surgery brought him back to me for almost three years. He was back in the early stages--and that was good enough for us. I knew it wouldn't help everyone--what surgery does? I never would recommend any surgery, had no vital interest in whether it was done or not, but I tried everything to get it researched, to get it before the public, but to no avail, blocked and ridiculed at every turn. I don't talk about it anymore, it was so long ago, my life has moved on. But that's when I began saying that I will never criticize whatever anyone does to get thru AD. I was able to tell him all the things I'd wished I said over the years; how I loved him loved him loved him, appreicate how hard he worked to care for me and the children, how he kept us secure, the fun things we did as a family, how much I appreicated all that he did over and over and he'd just glow--he understood completely--it was the most precious gift. He died peacefully in 2003 and I have NO regrets, none. You enjoy, I know EXACTLY how you feel, thanks for the memories, it does a heart good.
You are all just wonderful! I am sitting here with tears in my eyes reading your replies. Partly from the overwhelming support I was in great need of... thank you! ♥ And partly from the reading the stories you have all shared.....my heart aches for each and every one of us who have lived through this hell.
I read the post by all of you with your * by your names..... the love and compassion you show those of us following in your footsteps always moves me. It always have... but the closer we get to the end, the more I need and want to hear from you. I sincerely do not believe I will survive once Lynn leaves me. I believe people can and do die from broken hearts. But, as I read your posts, I know you must have been feeling just as uncertain and frightened, as I am now..... you give me strength, and more important you give me hope ☼ Thank you for continuing to post here, you are very much needed and greatly appreciated!!
Elaine, you always say such beautiful things! You got my tears flowing when I read "but for her to still radiate so much love for him is such an inspiration." Lynn use to say he could feel my love radiate through him... he use to sing the song You Light Up My Life to me, all the time... you brought back some very happy memories, thank you ♥
I've been thinking about this overnight and how similar the reactions of Lynn were to my husband after his surgery, which was done to increase blood flow. I'm such a stick-in-the-mud, I've never smoked anything, but from what I've seen about MJ, I think it must increase circulation and that would bring more oxygen to the brain. Yes, there certainly are risks w/MJ -- and I wouldn't know anything about the difference its effects may have of smoking it vs pills, but I think again that blood flow plays a part in AD.
And, Nikki, dear, I know that you will survive, you have things yet to do, you will light up the lives of others. I know this because it is not in your hands. Nature takes over, guides you, protects you--you have no choice but to survive. Nature eventually puts everything into its proper place in our lives--and that's how we all get thru it.
Mary22033, I believe you have misunderstood the study you cited. It was *not* designed to identify a causative relationship in which taking cholinesterase inhibitors and/or memantine causes a more rapid decline.
In fact, every last study on both types of drugs has indicated otherwise, and there have been dozens.
The study you referenced was designed to determine the circumstances under which doctors tend to prescribe the meds for MCI and early-stage AD patients. It found that the patients who were declining more rapidly were significantly more likely to receive prescriptions.
Ergo, their logic with regard to clinical trials is that if one allows early-stage patients who are on AD meds into a trial, one may be selecting for patients who are less likely to benefit from the experimental treatment -- and the drug will be less likely to be found beneficial.
I have a suggestion. Some of us are getting useful information from this discussion. If you don't find it useful, or don't want to read it, don't read it. There are several threads I don't read because the topic doesn't interest me - particularly (and I know this is heresy) any related to cats. Some, such as the one on hoyer lifts, I don't read now, but may need sometime in the future.
I did start this thread, and it was meant to share our personal experience. I don't want it to become a thread about boring medical information that we are all more the capable of looking up ourselves. But I can not, nor would I want to, stop others from posting their beliefs. But neither do I want it to become a thread breeding discontent. This wonderful site has always been a safe heaven for me. I was given the same advice that ((Marsh)) is suggesting...... if you see a post that you don't care for, or a particular poster is getting under your skin, ignore that thread or that person and continue to read the rest to continue to feel and experience the amazing power of support we all find here.
I know you wonderful ladies are supporting me and trying to keep this thread about Lynn and I and our experience. I greatly appreciate it!! More than you could ever know.... your support and comfort is the reason I am still a part of this forum today!! ..... for me, I ask you to please just do as I am and ignore any posts that cause you to become upset. Knowledge is power. Power is also not letting other people undermine the message you are trying to get across.
Now.... back to my beloved Lynn <smile>
I had a particularly hard day... I was helping to care for my dying Aunt and Uncle... My Aunt, is very close... My Uncle, whom looks and acts so much like my Dad, is taking this very hard. He was in tears a good part of the morning. It took every last ounce of strength I had to not break down myself. But he needed me to be strong, she needed me to be calm and reassuring............. so I did. Until I left.....
I was not able to go see Lynn today, too emotional and crying causes wicked attacks....... plus it was snowing and sleeting, so I decided not to go in. I don't normally go in on Sundays, so that is two days in a row I didn't go. I HATE not seeing him two days in a row, I worry worry worry!!!
I just got a phone call from the nursing home...... Lynn wanted to talk to me!!!! Ok, so the first time WASN'T just a fluke <huge grin> He talked and talked to me, some made sense, some didn't.. but who cares? My sweetie was talking to me! and on the phone no less!
I told him that I was sorry I didn't come to lunch today, that I couldn't because my head hurt too badly, but that I would come right over to see him.... and he STUNNED me by saying......" no baby, stay home. " and I said you don't want to see me? (with a laugh in my voice) and he said.... "I worry about you, and your head" ....
WOW!!!!! he is able to still feel empathy and compassion. *gasp
We ended the call with many words of love ♥ We said I love you many times, the last thing he said as we hung up was, "I love you more" *tears*
He IS still "in there" and By God!! I am so thankful to Marinol for unlocking some of the chains that were holding him an unwilling captive!!
Betty, I do believe that blood flow plays a part in AD, at least for Lynn. I say this because when he was in the hospital last year for the pulmonary embolisms, he had a period of time when he was much clearer. I have no proof, just my gut screaming, that it had to be because of the Coumadin. My theory is that where Coumadin thins the blood, it made the flow to his brain easier, and supplied more oxygen. Sadly the positive effects disappeared as his body became adjusted.
I did try to talk with his doctor about it, and I did ask for Lynn to be put on oxygen therapy. He refused because there wasn't enough "proof" it worked.
I do not care about proof!! My husband is dying already, can there be a risk worse than that? I think not........ Lynn has a new doctor now, and I will ask again about the oxygen therapy.... I will let you know what he says..
Betty, I think you are a warrior!! How brave to go to another country to get your husband a surgery that could possibly help him.. and DID help him. How blessed those three years must have been for you!!! ((big hugs))
I agree there must be something beneficial about more blood flow to the brain. When my hb was first dx, I asked his neuro about all the so-called games, memory aids, etc. being market as "brain cures". His answer was, save your money. The only thing that is truly beneficial is exercise, because it increases blood flow to the brain.
Bettyhere--I know that you said you're done talking about the surgery your husband had, but you have piqued my curiousity. Would you perhaps reconsider and tell us about it a little?
Nikki I came back to your post today, I needed some good news to fulfill me and your Lynn calling you has done just that, please keep us informed about him good or bad but I pray it`s all good, I love to hear about all the good things that are happening with everyones loved ones with AD , there is to much sadness with this illness, my greatest wish is for a cure and everyone gets to have there loved ones back God Bless you all
If you type 'omentum transposition' into 'search' a lot of info will come up. The above site is fairly inclusive, and the hostility toward it seems to have begun long before I heard about it when it was being used for spinal cord injuries. All I ever wanted was to get research done to find out why it helped some and what it might lead to. So you'll find it is used for other things besides AD, which is confusing, but essentially all it does is increase blood flow to parts of the body that need that. Again, I have no formal medical background, but this is my layman's understanding. Glad you asked.
The miracle continues ♥ Let me share some highlights since my last post …..
Lynn is not only talking again, but he is having actual conversations!!! Conversations that often times make sense even! This is a far cry to where he was before . Before he could still say I love you, which I was very grateful for!! But that was about all he could do, he could not even respond to a simple question, much less carry on a conversation!!!
An example of a conversation we had just the other day…. I shared some of this on face book, so forgive me if you have already seen it.
While on our walk outside enjoying the beautiful sunshine ☼
Me - I love you!
Lynn - I love you more honey
Me - No, I love you more!
Lynn - (In an exasperated voice)…. Well you know THAT isn’t true.
Then as I was feeding him lunch…. Often times I will give him a bite of ice cream and then sneak in bites of his meal in between. He is never overly happy that I have tried to “trick him”
Me - take a bite sweetie
Lynn - what is it?
Me - Ice cream!
Lynn - (looking skeptical, takes a bite.. it is ice cream this time) mmmmm that’s good!!
Now I give him a bite of potato and he makes a scrunched up disgusted face
Me - I cooked you that, I‘m a good cook huh?
Lynn - Not if you cooked that!!! (cracked me up!)
Me - come on, its good, take a bite
Lynn- if you like it so much, you eat it!
Now that comment right there, that is “My Lynn”! He was such a smart ass!! I was laughing right out loud!! God!! It is so amazing to witness these changes, so wonderful to be given back some of “My Lynn”♥
During another recent visit, my niece and nephew came to visit their Uncle Lynn. As soon as they walked in the room his smile lit up the room and the twinkle sparked in his eyes. He recognizes my niece, easier than my nephew. I believe because my nephew now looks more like a man than the boy he remembers.
I told him Lynn, its Derek and Mikayla. He looked long and hard at Derek.. For the longest time. Still smiling, but you could see he was struggling … so I said Lynn it’s our little boy Derek. And Lynn laughed a hearty laugh while looking at Derek and said “little my foot!! He has to be 6 feet tall!!“ …and he is …
so Derek does as he often use to do, he took his picture down from the wall when he was younger. He said Uncle Lynn, it’s me, your nephew Derek. Lynn took Derek’s hand and said “ so it is! My, how you have grown!!” Derek got the biggest smile on his face…precious!!
Then Lynn looked at my niece and told her “ you are very beautiful” Then he looked at me and said “ we are going to have trouble with boys!” Then again looked at my niece and said “don’t worry, I’ll take care of them!” Awwwwwwwwwwwwwww!!
Mikayla has always been comfortable with Lynn, he is and always will be simply her Uncle Lynn. Nothing, not even Alzheimer’s can change that. Derek has a harder time. After Lynn was not able to walk any longer, it was harder for Derek to visit. He rarely went after that because in his words “ he was my Superman!!! It kills me to see him like this!!” …………………I know buddy… I know….
I was glad Derek decided to come. I had told him Lynn wasn’t lost in that blank stare 90% of the time any more. I told him he was actually talking again! And was awake and alert for my entire visits. It is one thing to be told, and quite another to see it first hand!!! We had a fantastic day!!!
Lynn had an exceptionally wonderful day that day, and I think in part because the kids were there to see him. He chatted with them about school, Derek’s football team, they even helped me feed him lunch. Mikayla sang to him, and he tried to sing them a song too. We didn’t know the song, and couldn’t make out the words, but the tune was nice, and he was thoroughly enjoying himself! He was very animated and one could see he was happy.
Lynn was even able to articulate to them how much he liked having them visit. And as we were getting ready to leave he looked at them both and said “ you will come back to visit me, right?” and both kids chimed in that they would!! And a huge smile spread across him face as he looked right at them and reaching up his arms to them ….and said “ good! Because I love you both very much”
*gasp…..and tears*
It was a Gold Star Day, a memory that will last me a lifetime!! ♥
There is more….. But for now that is all I can write…. It is so emotional for me.. It is WONDERFUL!!! But still…. I am overcome with emotions…..
I feel I am in the presence of a miracle! …. Thank you for letting me share a little of our miracle with you ♥
Nikki, its so wonderful to hear of positive endings to sad stories. may you and lynn be blessed to continue this miracle and enjoy this time together. divvi
Tomorrow is Lynn's birthday ♪ ♫ ♪ For the first time in ages I am actually happy about it. I bought him a DVD player and two special edition DVD sets of his favorite shows. I know he is going to be happy, and THAT makes me happy ☼ I know tomorrow is going to be another Gold Star Day ☺
Just an update on Lynn..... He continues to improve in leaps in bounds! The biggest notable change is still his talking. He now speaks in complete sentences most of the time!! Some make no sense, for example... "Tomorrow I will tear down that whatchamacallit because those guys keep coming in my room." I have NO idea what he is talking about. He used to be a master builder and now he is always talking about redoing his "home". He thinks he built his room and is always talking about how much he likes it and the plans he has on remodeling. Sometimes he speaks complete gibberish, mostly this happens when he is tired.
That he went from only being able to say I love you, not even able to respond with yes and no answers, to now being able to articulate and says things that make sense is just mind blowing! Every single day I am amazed all over again by something he does or says. His funny smart ass nature is present again as well. The nurses are as floored as I am and they just love to see all these improvements. As you can imagine when you see some of these people every day you get rather attached to them.
Sunday was our anniversary, I told my favorite nurse Becca, the one who usually does Lynn's care in the day time that I wasn't sure if I would be able to come. She understood, and said not to worry she would take excellent care of him. I wanted to see him, but I wasn't sure my fragile heart could handle it..... Last year was so hard on me. Me sitting with Lynn, my heart full of love and memories of past anniversaries, and him sitting in his chair, completely lost to me. Just a blank stare.... acccccck!!
I circled the nursing home for over an hour before I finally parked the car, pulled up my big girl panties and went in. I was met with a big Happy Anniversary and a hug from Becca. She was so happy I had come in, telling me how strong I was, ahhh if she only knew how chicken hearted I really am!! I didn't tell her how it took me over an hour to finally get up the nerve to go in.
I walked in Lynn’s room with a heavy heart… But when he saw me, he got the biggest smile on his face, his eyes lit up and he reached out his arms for a hug… saying, "There she is! There’s my baby!" As I reached down to gently kiss his cheek, he said "I love you sooo much honey"…… then he smiled saying, "I got you! I said it first!!..... He was so proud of himself….. And as happy as I was, it was also heartbreaking… And I could not help it; tears started rolling down my cheeks. Then for the first time, in well over a year, I heard Lynn say my name! Oh….. MY……GOD!!....he said, “ ooooh, don’t cry Nikki! You will be alright, I will always take care of you”……*gasp* *tears*
I heard a sob behind me, and it was then that I noticed Becca had followed me into the room and she was moved to tears! She was also taking pictures of us. She then told me that our love gave her hope, and that she hoped one day to have that kind of love. She was so happy for us. And so happy for me to have these aspects of Lynn back. They now call Lynn their miracle. They are so kind and wonderful to him. He keeps them in stitches with his witty comments. And they are all so happy to see him ALIVE again. After a little chit chat, she said she would send me the pictures and excused herself so we could have some alone time.
I knelt down beside him as I shared with him the scrap book I had made of our life. He LOVES to read now. He reads all the TV ads and every sign he sees. Books though are too much for him. Too many words on the page for him I believe. So I wrote in clear large print for him. He read each page and looked at the pictures. Often he was shocked that the man in the picture was him! I would say well who is that girl, and he would always say "you", "my honey" or "my wife" Then I would say well then, who is that guy with her and he would say, well, it must be me! Sad, yet endearing.....
I say that a lot now... Sad, yet endearing....... He has a stuffed dog that he adores. He talks to him in such soothing tones. Always petting him and he makes sure I give him some of his food to eat. He takes such wonderful care of that dog. So very sad that he has been "reduced" to talking to a stuffed dog, yet so very endearing the love he shows him. It is sad that he loves to play with the big beach ball, but also endearing when I hear his child like laughs. Ahhhhh, it is hard... but, I am so very grateful!!! What we have now is soooooo much better than where we were last year!!!!
There are other significant changes, like the reading. He also now often times knows when he has to go to the bathroom and is able to express to us that he has to go.(still total urine Incontinence ) Today while sitting on the toilet he said "whoa, you might want to leave, here it comes!" The look on his face was priceless!!! I could not help it, I had to laugh <big grin> When we brought him back out he saw my sister Missy sitting in the chair. He blew our minds by saying, "oh look, there is your sister" ... W H A T!!!!! Almost had to pick Missy up off the floor! She was soooo damn happy, and a bit choked up.....
He counts now too. Not a lot, but he sometime count to 10, not consistant, but sometimes..I'll take it! There is a young guy who works there who has taken a special shine to Lynn. He spends any spare time he has talking with Lynn. He brings in items for Lynn to count with him....awwwwwww!!! He comes in early so he can put in one of Lynn's DVD's for him. He hates when the nurses turn the channel to something Lynn doesn't like, like soaps, and is always hounding them. He takes good care of Lynn, and Lynn clearly likes him as well. The other day he came in Lynn's room and he was all choked up talking to me. He said Lynn told him he loved him like a son. This grown man had tears in his eyes talking to me....... warmed my heart. To know people care so much for Lynn ….it means so much to me! ♥
Lynn also now talks on the phone to his sister in California. The first time she heard his voice she burst out in tears. So moving...... It is harder for him on the phone. He doesn't always make as much sense as if you are sitting right in front of him. But his sister doesn't care at all!!! She hadn't heard his voice in well over a year! To have him reply to her, was a gift she thought to never have again.
He is doing amazing! Another big change is that since he has been on this medication, he no longer chokes on his food. For the longest time, even with the pureed foods, he would gag on his food. No one can explain to me why this no longer happens. I can't explain it either, but I am damn grateful for it! He is eating wonderful, and he enjoys eating again. I couldn't be happier.
There are so many changes I could bore you with. Each day brings a new light to my heart. We always laugh, he loves to talk my ear off, and we have such wonderful visits now. Every single day I leave with a huge smile on my face. A far cry from last year when I was collapsing in the elevator in sobs!!! I can't explain how or why Marinol has released some of the Alzheimer's chains Lynn was held so strongly in before. To be truthful, I am so happy enjoying the changes; I no longer care about the why. I am however still documenting the changes... perhaps one day I will write the drug company and tell them about the miracle they helped provide ♥
Thank you for letting me share a little bit of "my Lynn" with you all :)
Nikki, is the doctor amazed by this turnaround? I would think if this is atypical he would want to contact the drug company that produces the Marinol and have them conduct some clinical trials. It would be interesting to know if others taking the drug are having the same kind of reaction.....
It is awesome!!! No Nora I have never questioned the Alzheimer diagnoses. I suppose it could be some other dementia, FTD or something..... But his doctors spent a great deal of time on testing before they diagnosed him with Alzheimer's. I guess I never questioned it, because I watched helpless as year after year, inch by inch Lynn has been taken from me. Other than a biopsy, there is no way to confirm the diagnoses. So I guess for me, I have been so consumed all these years in the loses and the care of Lynn, that I had zero time or energy left to question something that can't be proven one way or the other.
Hi Sandi, Lynn's doctor never saw Lynn until mid March. So he never saw him before when he was so lost to me. He never saw him unable to talk and lost in that blank stare. He only became his doctor after I fired the other one for not treating Lynn's pneumonia. His geriatric neuro psychiatrist however is amazed at the changes in Lynn. He is encouraging me to keep up the documentation and for me to contact the drug company. He is not however making any attempts to contact them himself or get any studies done. He is a very busy man and has little time to spare. But I think more; at least I assume it is also because of people negative feeling towards the use of medical marijuana. The stigma is still great, though it has worked wonders for many people.
At my Aunt and Uncles funeral this weekend I found out that my cousin with cancer is on it as well. He said it is the reason he is still alive. None of the other medications were helping with the pain and nausea. I think only when more and more people benefit from it will more studies be done. People get so afraid of the side effects, yet they will give standard medication that has grave risks as well. It makes little sense to me. I was not look for a miracle, just an appetite stimulant. If someone had told me about the possibility, however slim, I would have tried him on this long ago.
There are many trials using Marinol. Just google Marinol for dementia. Just found this at clinicaltrialsfeeds.org
Not yet recruiting Delta-THC in Behavioral Disturbances in Dementia Last Updated: February 23, 2011 Condition(s): Dementia; Behavioral and Psychological Symptoms of Dementia
Thank you, I will have to go take a look at that Vickie...... In my first post I did name a few sites with information.... then I learned my lesson about not posting too much "research stuff". So I haven't been posting anything good or bad I found in research. Just keeping it to our personal experience. I am glad to see more research is being done! I think I will start putting my documentations in order and start contacting people. What could it hurt?
Nora, I have thought about this since last night and I find I am still wondering why you asked if I questioned the Alzheimer diagnoses..... Do have some thoughts I should be sharing with his doctors? If so please share them with me and I will speak with his doctors. Thanks ♥
Nkki I know you have assured that all available testing was done on Lynn. There is just so much we don't know. I guess you could call it looking for zebras in the forest instead of deer. It is always possible that something other than garden variety dementia caused Lynn's symptoms. Perhaps even something reversible. Minds greater than mine are called for.
How I wish it was something different, something reversible!!! I have taken him to the best we have, they all confirmed the Alzheimer's diagnoses. He has had just about every symptom everyone else’s spouses have had, from the rages to the shadowing, to now being bedridden. So though I wish it was something different with a cure, in my heart I know it isn't.
I wonder if I am giving people the wrong impression. It isn't as if he is actually getting better, as in he will be cured. That is not happening. He is still bedridden. He still needs a lift to be moved. He still can not do any of his daily care needs. He still needs to be fed. He still has times when he doesn't know how to do simple things like take a sip from a straw.......etc etc etc. I do wonder if Lynn's previous doctor was right when he said Lynn was now in the last stage. I often wonder how much of his decline into the dark abyss was from the pulmonary embolism, and the severe pneumonia. He was feeling horrid! That HAD to have an effect on his ability to do anything and everything.
So no, he isn't being cured.... but he IS much MUCH better than where he was last year at this time. It is still so heartbreaking to see him so limited... but now I am not focusing on what he can no longer do. I instead chose to embrace and enjoy the things he is still able to do. That he is talking again, is a gift beyond measure! That he is happy and able to express that he is, that brings me great comfort. I have no doubt that his feeling better has helped him rebound. But, I also know the Marinol has played a major part in him regaining some of his lost abilities. I know without a shadow of a doubt, that he is now happier than he has been since diagnoses.
Well, pass around the "doobie"......seriously, isn't that why people use marijuana....to get that euphoric feeling. I know nothing about it.....I sometimes think I was the only child of the 60s who never smoked the stuff....
Nikki--I read what Nora posted as: perhaps Lynn has dementia, but caused by something other than AD that is reversible. So he would have the typical dementia symptoms, but the root cause can be something like NPH, which can be reversed (just using that as an example). We don't usually hear of ANY improvement with AD.
Nikki, I've seen something parallel which is that about 45 days ago I took my wife off all medication which specifically was Ebixa, Lipitor, and an anti-depressant. I'm experiencing something a bit similar to what you are.
My wife is now speaking contextually and in multiple joined sentences to a degree that everyone including me finds startling because she was virtually unable to get out a sentence or say something to the point beyond "Do you have to go to the bathroom?" "Yes".
On the other hand her physical abilities didn't change at all. They didn't improve one bit.
The downside is that Dianne now stumbles and says "Watch what you're doing Dianne. I'm going to have to do better." and then does some other weird thing like check for something in the carpet again.
I don't advocate taking people off their pills either. I'm relating my experience.
Sandi, yes recreational use of marijuana is so people get a high feeling. He does not get "stoned" like one would when smoking marijuana. But it does for sure make him happier! To my thinking, when you reach late stage, what could possibly be wrong with that? It is my greatest wish that he be as happy as his diseased mind will allow.
Marilyn, thank you for your comment. But I do have to say that isn't necessarily true, many of us here have seen our spouses rally and rebound. We have seen them get "better" with new medications, and often when they are taken off them. There are many posts here about our loved ones doing something that shocks us.
Just as most of our spouses, Lynn was tested for every other possible cause before he was diagnoses with Alzheimer’s. Not by one doctor, but many. But, I suppose for argument sake, ALL of our spouses “could” have something else.
As I wrote in the first post of this thread….. “From that site “Dronabinol also demonstrates reversible effects on appetite, mood, cognition, memory, and perception. These phenomena appear to be dose-related, increasing in frequency with higher dosages, and subject to great interpatient variability.”
So, to my thinking, it is doing just what it has been shown to do. So when someone does show said improvements, it should NOT then make one question a diagnoses.
Wolf thank you for sharing you experience. Lynn too was "clearer" for awhile after he was taken off some medications. Others here have said the same thing. Like your Dianne, Lynn's physical abilities haven't changed at all either.
The brain is a mysterious place. We know SOoooo little about it. You can look at a heart and figure out how it pumps blood, but a brain . . . living or dead, diseased or normal it all kinda looks the same. (Yeah I know except for the shrinkage at end stage) The brain does function based on billions of nerve connections. And not really connections as the nerve cells are 'connected' by chemicals that pass between them. (neurotransmitters) Dementia (what ever the cause) is always some kind of disruption of the connections and interconnections of the brain.
Recreational drugs - make you high. They do that by altering how the many cells interconnect to make you think or experience the world differently. It is not at all unrealistic to think that a chemical that could 'rewire' the brain to change perceptions (make you high) could rewire the brain to affect AD symptoms. . . . .
I have trouble understanding how Namenda works. I read and read the mechanism but can never retain it. It involves converter enzymes and one day as I kept looking up and reading more about the mechanism I learned that it is very similar to the street drug PCP! I was shocked. Certainly not the identical mechanism but again all realted to altering how the brain cells connect and interact.
Our problem is that we just cant see into the brain the understand exactly how it works and all the stuff that is going on. Argggg !!!!
The question about Lynn's (true) diagnosis would relate to the type of phemomon that is known with Lewy Body Dememtia. LBD people have terrible reactions to anti-psychtoics, which is really bad because they commonly hallucinate. So a drug that should stop hallucinations might actually make them worse . . . . strange.
PERHAPS Lynn has some 'variation' of AD (or an as yet unknown dementia) that can somehow benefit from THC??? It is intriguing. Again there is so much we just dont know. But experiences like yours is where knowledge comes from. And any positive changes is where joy comes from. Congratulations on having a positive experience. :-)
However one aspect you have not addressed . . . You originally started Lynn on the Marinol to increase his appitite. Has it helped with that? Is he eating better?
Hi Jim, thank you for your reply. I am sorry, I got so caught up in the other benefits I am seeing that I was remiss in updating on Lynn's appetite and weight. The Marinol had an instant impact on Lynn's appetite. It did indeed increase his appetite, also important to me, is he now enjoys eating again! He continues to gain weight at a slow, yet steady rate. It was so very painful watching him starve to death... I can't put to words how grateful I am to see him eating so well now. Thanks for asking Jim ♥
In reading through some of my posts, I feel I came off a bit defensive. I guess I am, and I am sorry about that. I am just going through a lot right now in my private life, and I am raw. I come here for peace, support and comfort. The only light I have in my life right now, is these improvements I am seeing in Lynn. So, I come to share those with you..... I try hard to keep positive and to play up the good things, because if I dwell on the horror of this disease, it completely destroys me. I guess I am just not in the right frame of mind to be questioning "what if" .....We have been through all the hell of testing and diagnoses and have been dealing with this hell for so long, I guess the time for what if's are just long gone for me. I am thinking everyone here can understand my feelings... at least I hope you can.....
ALL RIGHT CLASS!! CAN I HAVE YOUR ATTENTION PLEASE? ANYONE? ANYONE?
With Joan not here I've decided that (CLASS!!) I'm going to bring some order to this rowdiness and any inappropriate or over the top behaviour. We can just take it outside in a good clean bout of mud wrestling.
Ok, now here are the rules. Don't wear white after labour day. Ok. There's the mud. Now lets settle our disputes. Hey! Where did everybody go?
Wait! I'll get the old spice guy in a red speedo to referee (I'm on a horse). No? Ok, how about this? I'll get Johnny Depp in his pirates of the carribean outfit to wrestle the old spice guy in the red speedo and the horse can referee.
Tough room. How about this then, all disputes will be settled riding inflatable horses through the mud. First past the post with any part of them not covered wins the argument.
Boy this hall monitoring stuff is harder than I thought.
Ok, how about a completely gratuitus mud wrestling match between Gaddafi (the Keith Richards of the arab world) and Bill Clinton. We can tie Bill's curvy ideas to his leg so he can actually walk in a straight line and if Gaddafi takes it he can have one jet and a five minute head start?
Good god people! What's happened to your sense of adventure? I'm a doctor, Jean, not a magician.
Nietandyahoo and palacestein in underwater relay races?
Sarah Palin and Glen Beck at a tea party? First one that says something impolite has to eat a bug? Gretchen from FOX and Jon Stewart can judge.
You know, I remember having real fun. I watched The Daily Show tonight and they wouldn't leave the Wiener guy alone with his twits on twitter and I was laughing while my poor wife was slumped in her chair. We all know about raw or about coming out the other side of this trying to put the shreds back together.
I got the strap in public school for pulling the bra strap and snapping it on the girl in front of me where even though it was the 1750's or something she was already 'growing'. When I got home I got spanked again for getting strapped. The guys in my class thought I was less uncool then before I did that. I will never understand other people. That's no reason not to inflict myself on them.
CLASS!!! I will now teach you the ancient art of the deep gut loud belch and then the next lesson will be how not to giggle at the word 'poop'.
Wolf, thank you....I soooooooo needed that laugh! And it was a great, right out loud laugh too! <big grin>
Jim, that was a beautiful thing to say......thank you!
Ahhhh I feel better now, you guys are great! *big yawn* have to be up in just a few hours' so must try to get some sleep! Again, thank you! And sweet dreams <3