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      CommentAuthorHildann
    • CommentTimeJun 9th 2011
     
    Nikki,
    I have been following your experience with Marinol and I am very happy you decided to share your experience. My DH is in stage 7 AD at the age of 59. Jon has seizures occasionally and he shows improvement similar to what you have described for about a week after each seizure. Then the increased responsiveness fades way.
    After reading about your experience I asked Jon' doctor to prescribe Marinol for him. She figured it couldn't hurt so she agreed. He has only been taking 5mg Marinol for six days so far and the change is significant. He laughs and talks and is happier. The talking usually makes no sense but once in awhile he has an appropriate response. How wonderful to see him laugh! He is usually very blank and unresponsive.
    Jon eats well (still must be fed) so it couldn't be prescribed for appetite enhancement. Insurance won't cover it and it is expensive. Even so, we will continue with the Marinol and hopefully we will see even more benefits. It's worth it to hear him laugh again.
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      CommentAuthorNikki
    • CommentTimeJun 9th 2011
     
    Hildann, thank you for sharing your experience with us. I didn't know how young your husband was, so tragic..... I am glad he is experience some of the same benefits that Lynn has. Fantastic!!! It is priceless isn't it; to get parts of them back you never thought to see again. Lynn often made no sense when he first started taking it, but he was talking!! And that was such a shock to me! I am glad your dear husband is happier, really at this point in our journey, what more can we wish for? I am fortunate that Medicaid does cover the cost, but if they stop I would find a way to keep him on it. Like you said, to hear them laugh again, it is worth the cost! <smile>

    I found out earlier today that another member’s husband is also on it and he too has had improvements with his speech and forming sentences. Lynn did and still does continue to improve in these areas. Of course he still talks gibberish, but more and more he makes sense! I hope this is the case for your husband as well Hildann ♥

    I am SURE your doctor knows more than I, but I did want to share with you that there is a caution for people with seizures. I couldn't remember exactly so I looked it up...."Marinol Capsules should be used with caution in patients with a history of seizure disorder because Marinol Capsules may lower the seizure threshold. A causal relationship between Marinol Capsules and these events has not been established."

    I readily admit I know little about seizure disorders and I am CONFINDENT that your doctor is aware of this and still believes it safe enough for him to try. But, I wanted to make sure I posted it before someone else felt the need to put a damper on your experience. Embrace and enjoy those laughs!! I find you courageous and I hope the good results continue for your dear husband. I hope your miracle is as wonderful as ours has been......♥ ((big hugs of understanding))
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      CommentAuthorHildann
    • CommentTimeJun 20th 2011
     
    Nikki, I'm not too worried about the seizure issue. In fact, his post seizure period is so good I think it's good for him to have them once in awhile. Jon had a seizure last week and had a couple of wonderful days. It seemed like the combination of post seizure and the Marinol was a great combo. However, the last 4 days Jon has been very remote and little if any talking. I'm starting to have second thoughts about the marinol and I'm wondering if it's having more of a sedative effect. I guess we'll keep it up for a while longer and continue assessing. Do you give 5mg per day?
  1.  
    Just catching up on this thread after a week or so...Nikki, I totally understand your being thrilled over Lynn's progress....don't worry about being defensive, you are entitled to be however you want! If I was in your shoes and seeing the improvement you are, I'd be shouting it from the rooftops!

    Wolf--good post. You really do need to leave YOUR brain to science. I think I need to read it about 20 more times to catch everything in it.
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      CommentAuthorNikki
    • CommentTimeJun 21st 2011
     
    Hi Hildann, Lynn is only on 2.5mg once a day. He was started on the 2.5 with the intent to increase to the 5mg after a couple of months. But, he has continued to do very well on just the 2.5 that I see no need to increase it. His doctors agreed. Regarding the "sedative effect" Marinol seemed to have the reverse effect on Lynn. When he started on it he was sleeping pretty much most of the day. It took great effort on my part to keep him awake for even part of my visit and even greater effort to get him to respond to me.

    When he was put on it, he was also battling a severe case of pneumonia. For that reason, it did take me longer to notice the positive effects it was having on Lynn. Once I fired his doctor and got Lynn treated properly and feeling better, then is when I started noticing the miracles. He is now awake for my entire visit, be it 2 hours or 5. He does of course still sleep when not stimulated, but as his doctors said, this is par for the course regardless of what medications they are on.

    If you are noticing a difference in just the past 4 days it makes me wonder if he is feeling a bit sick? Or is it hotter than normal? The heat always makes Lynn sleepier (me too for that matter) Perhaps you could consult with his doctors about tapering down his dose and seeing how he does on a lower dose? Of course, you know your dear husband better than anyone, and only you know what is best for him. Best advice I was ever given ~ Follow your heart ♥

    Marilyn, thank you! <big smile> I DO feel like shouting from the rooftops, but I am settling for being damn grateful! It is hard for people who do not know Lynn, who did not see him locked inside himself, lost in that blank stare... to fully appreciate the miracle we are experiencing. So now, though I still do update here from time to time, I try to keep my overjoyed enthusiasm for those who did see and experience the hell of Lynn being lost to us. I sit on the sidelines as he interacts with people, watching as their jaws hit the floor and the stunned looks come over their faces. And I smile inside, because I too remember being totally floored at the transformations.... It is just amazing to witness!
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      CommentAuthorNikki
    • CommentTimeJul 26th 2011
     
    For those of you that use facebook, I finally figured out how to post videos lol
    I just added a video of Lynn last year, and a video I took of him tonight.... the changes are very evident! <huge smile>
    • CommentAuthorsheila1951
    • CommentTimeJul 26th 2011
     
    I saw your video Nikki. I was so impressed with the difference. The changes were SO VERY evident. And I am understanding why the <huge smile> came to you.
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      CommentAuthorNikki
    • CommentTimeJul 27th 2011
     
    Thank you Sheila :) It is so hard to try to describe the changes... it is much easier for people to understand if they can see the changes themselves. Is an amazing thing to witness!!
    • CommentAuthordonna L
    • CommentTimeJul 28th 2011
     
    Nikki, I would love to see the video as i am very interested in asking bobby's about it. do you mind giving me your name to search fb for it.
    • CommentAuthordonna L
    • CommentTimeJul 28th 2011
     
    also how do you all get your pictures on this site
  2.  
    donna I., this is what I did.

    Up at the top, you see the 4 blue squares, discussions/categories/search/account

    Go to account

    on the left hand side, click on personal information

    Scroll down to where you see account picture where the picture has to have a valid URL, you can't just upload from your pictures, you have to use a website that will transfer it into this format.

    I use tiny pictures - is very simple! http://tinypic.com/index.php

    On tinypictures site, click browse....find photo in your pictures or saved file

    then just copy the picture from tinypictures, paste it in the account picture...tada :)
    The direct link for layouts is the easiest to use
    ( but you can use any of them, just make sure the "code" starts with the http)

    Once you enter your picture ... make sure to scroll to the bottom and click save.
    • CommentAuthordonna L
    • CommentTimeJul 28th 2011
     
    Thanks Vickie, i will try that!
  3.  
    If that doesn't work for you, search for "pictures on website" and I think there are other suggestions.
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      CommentAuthorNikki
    • CommentTimeJul 28th 2011
     
    Donna I have my account set to private, only friends of friends can search for me. Are you in the group alz spouse there? I am and we can friend each other from there ,....if not if you are friend with anyone here that I am we can friend there as well. I am Nikki on there too. :)
    • CommentAuthordonna L
    • CommentTimeJul 28th 2011
     
    humm. i am not friends with anyone here that is on fb , i did find emily's fb , i guess i could friend her's. so new to all this. does the alz spouse have a fb?
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      CommentAuthorNikki
    • CommentTimeJul 28th 2011 edited
     
    Yes it does, one of our members Claire started it. I believe it is alzspouse as one word...is that right guys? hope to see you there :) I love having my friends here on fb as well....their support has been amazing!! <3
    • CommentAuthordonna L
    • CommentTimeJul 28th 2011
     
    ok, i found the azspouse and did a request to jion so hopefully i will get this all right soon, thanks Nikki!
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      CommentAuthorNikki
    • CommentTimeJul 28th 2011
     
    You are most welcome Donna! :) I love it here at Joan's but one good thing about the fb group is it is private, only those in the group can see what you write. Look forward to seeing you there :)
    • CommentAuthordonna L
    • CommentTimeJul 28th 2011
     
    nikki i have your name written down so you can edit your response now.
    • CommentAuthordonna L
    • CommentTimeOct 14th 2011
     
    well finally got the doctor to give bobby a rx for the marinol today. the rx is written for 2.5 mg twice a day. He is steadly losing weight .doesn't eat much at all. i amd so happy we are getting to try this. i gave him one at 6:30pm right before dinner.he ate about half his dinner so no big change for that but he is actually sitting watching tv. he always paces this time of the night and stands right in front of the tv blocking it causing me to say ever 5 minutes for him to have a seat , it never works. so we shall see....
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      CommentAuthorNikki
    • CommentTimeOct 16th 2011
     
    Donna, I truly hope the Marinol gives your husband the same fantastic results we have been given.

    I don't really update here anymore because I felt I was getting too much negative feedback, or none at all. So why bother? I save my enthusiasm at the miraculous changes I continue to witness for those who know how lost Lynn was to us and can see with their own eyes the changes. I am however more than happy to talk with you about your experience and help in any way I can. ((hugs))
  4.  
    Nikki, I am very interested in it and I am sure many are. You know what, if you believe with all your heart that it is a good thing, then just let any comments that do not pertain, go. I sure hope you have kept a journal of this valuable information.

    I used to be so insecure, and wanting to please....if there is one positive side to this dementia life, I am getting tougher. I see what I can do, and amaze myself at times. I get so tired of platitudes and dumb comments.

    I even talked to someone about the marinol the other day, they said they knew about it and it was very expensive. I will not be deterred if there ever is a time I feel it could help.

    I think dh may be too in the early phases for taking it yet, but it breaks my heart to see him so withdrawn. His appetite is fine at this point.

    So mahalo, thank you, for all the great information.

    Patty
    • CommentAuthorElaineH
    • CommentTimeOct 17th 2011
     
    Oh Nikki, I remember the negative comments that were posted when you started Lynn on the Marinol & to be truthful I was surprised that someone could be so negative in the light of all the positive changes you were seeing. Believe me when I tell you that you have more people here who would LOVE to hear you talk about how Lynn can talk & recognize you & all the other “miraculous changes” that have occurred. I for one am happy when I hear that someone else in our “sad club” can have some happiness in their life. So post all you want and know that we are happy for you! ((HUGS!))
  5.  
    I agree, Elaine. Keep posting, Nikki! Love to hear GOOD NEWS! Hugs.
    • CommentAuthorgrendelsma
    • CommentTimeOct 17th 2011
     
    Nikki, I have learned so much from you and your positive attitude. I have filed the marinol info for future reference my dh is still eating whatever I put before him. If I don't feed him however he won't remember to eat usually although sometimes he will make sandwiches, pb & j. This disease is so devastating if there is something that makes them eat or feel better I am all for it....esp if it is herbal -- not toxic drugs with scary side effects. I also appreciate your posts about placing your dh. Thank you for sharing...you are a bright spirit and I hope some day to be able to open up like you do.
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      CommentAuthorNikki
    • CommentTimeOct 17th 2011
     
    Thank you Patty, Elaine and Vickie ♥♥

    I guess I just got tired of trying to defend how or why he is improving. I fight every day to stay positive. To look to the good and not dwell in the sadness. I put on a tough act, but it really takes very little to crack my shell and send me sinking back into the dark abyss. In truth the negative comments, the ones questioning his diagnoses and even the joking ones about him being stoned, well, I just don't have the strength to spare to defend my choice, or try to prove that the medicine is doing just what it says it can do. I am raw and over sensitive I know...... ah well, we all do the best we can don't we.

    Those of you who have facebook have seen the videos and I update often. Our visits are filled with laughter and love. He is still bed bound and needs total care, but every single day I am so thankful for the pieces of Lynn I have been given back. He still loves to read! So I got him some first word flashcards. He can read every one of them. To me this amazing!! But I have had people comment how sad it is that he has to read children’s flashcards. I politely tell them it is only sad if one chooses to look upon it that way. That if you realized he couldn't read anything before and that he was unable to respond to me hardly at all, one would see it is not sad, but amazing. I guess in some ways I am like a proud parent. Maybe that is sad to some, I choose to look on it differently.

    Most days he can now tell me his name. And sometimes he makes my heart stop when he calls me by given name instead of the usual honey, sweetie or baby. Though I love the pet names, it just rocks me to the core when he says Nikki. I guess in a way it gives me the "proof" I desperately need that on some level, "My Lynn" is still "in there"

    He now carries on somewhat coherent conversations on the phone, this has enabled him to talk with his sister in California. They talk all the time, and it has made such a difference to her.

    He went on his first outing since being placed in Feb of 2009, he was able to go to my nephews football game!!! He LOVED it, and bless my nephews heart, in front of all of his friends, he made time to show his love for his uncle. It was just the most perfect day and one I will remember and cherish all of my life.

    Though I never told anyone here, last fall, between the pulmonary embolism and the double pneumonia, I was told by Hospice that Lynn might have 3 months............. well here it is a full year later and though he has decline physically, in other areas he is doing better than he was at placement almost 3 years ago! I guess the moral of this story is to not lose hope, our love ones rebound time and time again. And I think if we are able to adapt what we need and want from our loved ones, we are able to still feel a connection, and the love.

    I repeat to myself daily, memories are stored in the brain.. love in the heart. Without a doubt he still loves me, it is enough....♥
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      CommentAuthorNikki
    • CommentTimeOct 17th 2011
     
    grendelsma, thank you... what a lovely thing to say ♥ ahhhh the PB and jelly sandwiches, now that takes me back!! Lynn about lived on PB for over a year lol. I am soooo glad to hear your DH is still eating so well. The more you post, the easier it gets to open yourself up.... keep posting, people truly do care and want to help. ((hugs))
    • CommentAuthorHanging On
    • CommentTimeOct 17th 2011
     
    Nikki, I too don't post much. It seems like I don't get much feedback. Sometimes I am really hurting and post and lay it out, only to not get much feedback. I know my case is frustrating, and probably everyone is tired of my tired story, ie, no dx, etc. But I do read here every day and value so much having the information I glean from the posts. I really think I just don't know how to express myself in order to get the answers/advice that I'm asking for.

    Hanging On
    •  
      CommentAuthorNikki
    • CommentTimeOct 17th 2011
     
    awwww ((Hanging On)) it just plain sucks sometimes doesn't it. I dare say no one is tired of your story, I know I am not! I just don't come here as often as I use to. Mostly because I have little to say. It is different in late stage and though I feel great heartache for those suffering now, it is often too painful for me to revisit that period in our journey. I feel like such a heel sometimes, but I know we all must do whatever we must to survive this.

    Keep posting, we do care ((hugs))
    • CommentAuthordivvi*
    • CommentTimeOct 17th 2011
     
    nikki, its good to hear that your lynn continues with his good progress on the marinol. we know so many folks read posts but seem to not be able to post a reply as they feel they cant offer any help on the particular subject. we have said it before many times, just a hug or thinking of you is all thats necessary most of the time.
    sorry to hear you didnt get the needed feedback or answers. :( we will try harder
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      CommentAuthorBama* 2/12
    • CommentTimeOct 17th 2011
     
    I come to this site several times a day but I do not post a lot. When I am down emotionally I can't seem to express how I am feeling. I try to only post when I can be upbeat. I really do care for all of you and I don't know what I would do without this site. So keep posting your feeling and know that we love you.
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      CommentAuthorNikki
    • CommentTimeOct 17th 2011
     
    I am the same way Bama...... we love you too ♥
    • CommentAuthormarygail
    • CommentTimeOct 17th 2011
     
    Nikki, I find it hard to come to this site, it has bad vibes for me,I am trying to remember the good times with Bob, it will be 2 yrs since his death on the 23rd, still seems like yesterday, I am so happy you still have Lynn in your life enjoy him to the fullest.
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      CommentAuthorNikki
    • CommentTimeOct 17th 2011
     
    ((Marygail)) sooo good to hear from you ♥ I was shocked to read it will be two years.............. I can understand completly why you find it difficult to be here. I still have my Lynn and I find it difficult at times. We are just beyond most of the stages that need a lot of talking to get through....

    It is so sweet of you to stop by, but if it is too painful, we would all understand. We can keep in touch on FB... and I would love to hear about the happier times with you and your Bob. Much love and lots of hugs ♥
    • CommentAuthorgailn
    • CommentTimeOct 17th 2011
     
    Nikki, I too love reading about the huge improvement in Lynn's quality of life and the sheer joy it brings you. It warms my heart, I'm so happy for you... and that's good for me too!!!

    While we carers need to face the reality of our situations....we spend alot of time under the dark cloud & it's not good for OUR health. Recently Bama said on another thread that she tends to post only when she's feeling positive....I have this tendancy myself, however, I really appreciate the vents because there is such comfort knowing that others feel down as well. Reading about others' struggles opens the doors for those of us who need a little push to let it out. Letting it out hopefully puts us one step closer to dealing with it. So, the door swings both ways.

    Your Lynn is one lucky man to have you in his corner.
    • CommentAuthordonna L
    • CommentTimeOct 17th 2011
     
    it is so hard to post positive after eight hours of work, washing bedding that got wet last night, trying to make sure the food i put in front of bobby gets to his mouth and not on the floor and in the dogs mouth, washing the truck, giving bobby his second shower cause he did not make it to the bathroom in time. soon the sheets will be dried and i will have them back on the bed for another night. i think maybe 2.5 twice a day to start with was maybe too much, but is sure was good to see him eat!! the biggest problem now is that bobby will not swallow a pill without a big long issue. i have tried several things but his tongue finds the stupid pill ever time and it takes so much time. i wonder if it is worth it. but there was a gleamer of positive reaction so i will back off of the dosage just a bit . now i need to know something i have not thought of to get him swallow it when i do give it to him. i am sorry, i don't post much and i certainly am sorry that someone that is going through this "hell" is not getting any feed back when needed! keep venting and telling us what you need. i wish i was better at voicing my needs to the family!! prayers and hugs to all. and to all a good night!
  6.  
    donna L, I have the same problem with pills with my wife. One day I found that her diabetes pill was still in her mouth after over 2 hours. I finally solved the problem by grinding all her pills and putting them in applesauce, which I feed to her. Some pills cannot be ground up, but you can get his doctor to prescribe ones that can.
    • CommentAuthorKadee*
    • CommentTimeOct 18th 2011 edited
     
    I found after awhile my husband would not eat applesauce. I then crushed & mixed them with a little Hershey's Chocolate Syrup. He never refused them. Bless his heart I wish I could still do that.
    • CommentAuthordonna L
    • CommentTimeOct 18th 2011
     
    thanks, we just got back for the urgent care . bobby accidently leaned on the cat to hard , the cat decided to bite bobby. second time this has happened this year! so we got a liquid antiboitic . they tell me the marinol cannot be crushed or split,. it must remain in whole form. but the chocolate syrup might be a good idea. he loves chocolate so maybe tomorrow i will try putting it in a spoonful of syrup!
    •  
      CommentAuthorNikki
    • CommentTimeOct 19th 2011
     
    Donna, sorry to hear about the cat incident! I hope both Bobby and kitty are fine.

    Lynn's Marinol comes in a gel tiny ball. Not the long capsules, but a ball.. is this how Bobby's is? Lynn is on a pureed only diet, so for pill like Marinol that can't be crushed, what the nurses at the nursing home do is to take the pill, put it in one of those little medicine cups, put some TwoCal® HN in it, and then they heat it up in the microwave a little bit. Then they mix it with ice cream. If you don't have the TwoCal® HN, you can use something like boost or even milk I imagine. I would check with your doctor first to make sure he thinks this is an acceptable way to give the medicine to him.


    ((Kadee)) ♥
    • CommentAuthorrichard
    • CommentTimeNov 5th 2011
     
    Nikki - thank you. i heard about marinol and found your article. can you (or anyone else reading this) tell me if you have experienced it helping with aggitation or aggression? my mother has been on risperdal for 4 months. she has changed dramatically. not wanting to walk or get up and her hands and shoulder shake often. Has anyone had this experience with Risperdal or is it a coincidence and just the disease?

    my mother has been off Risperdal for two weeks. She is back to being aggressive and stubborn and that's when i heard about marinol. seriqual doesn't seem to help my mother for aggitation (just sleep). any information would be greatly appreciated.
    • CommentAuthorcarosi*
    • CommentTimeNov 5th 2011
     
    richard--I don't know about marinol for agitation and agression, but there are several other meds for that besides Seroquel and Risperdal. Geodon, and Zyprexia to name2. Get back with your Dr. on this. Agitation and agression are no good for either of you. We had to change out my DH's Thorazine because of extended exposure. Took 4 tries to get one that works without significant side effects.
    • CommentAuthordonna L
    • CommentTimeNov 7th 2011
     
    we started the 2.5 mg of marinol about 2 weeks ago but i was having a very hard time getting him to swallow them . when he will he eats so much better. but the swallowing thing is so on again off again that i cannot depend on it too much. i thought it was really going to work for the settling down in the evenings , the first few times he sat and watched tv without pacing but that doesn't work all the time either. doesn't really help with the aggitation either so we are on a sleeping aid at night and maybe starting something else for the day time tomorrow
  7.  
    Nikki-- After reading about your success with Marinol, I decided to call Lloyd's neurologist about it. I was careful not to even mention the word marijuana when I asked for it. His assistant called me back ans said I would have to ask our family physician for it. That irritated me to no end. If there is ANYTHING AT ALL out there that will make him feel better at all, I believe it should be made available. What have I got to lose ???
    Lloyd has started to have headaches alot. His neurologist said that is just normal at this point. So far Tylenol is working. He is still eating, but he wants to cram as much in his mouth as possible and I am having to tell him to swallow. He has difficulty sitting and climbs onto things instead. Of course that does not work with the toilet.
    I really wonder just how many patients our neurologist has who are at Lloyd's advanced stage. He has wanted him in a facility for almost a year. If he were in a facility, he would no longer be treating Lloyd. Hence, he may have less experience than he cares to admit.
    Tomorrow, we have an appointment with our family doctor. I am crossing my fingers hoping he will prescribe the Marinol. I only want to see what it will do for him. I would love to hear him talk again...even just a little. I am willing to try anything that will make is life better to any degree!!!
  8.  
    Donna, I know what you mean about pills. It used to be a joke around our house about Lloyd's "special ice cream". Since I have to feed him and I use one dish, I would sprinkle the smashed pill on one side and feed him from that side and I would eat from the other side. He was never the wiser and I was very careful!! All his pills right now are smaller, but the bigger ones were a real pain in the butt! I would give him drink after drink after drink and every time he would get that pill in his cheek. I would feel his cheeks and there it would be. Then I would end up walking around following him with a glass of water to make sure he didn't spit it out somewhere. Love the little pills. They go down so much easier. But I will crush them and put them in his food again if I have to. I am careful to read the bottles for any precautions about NOT splitting or crushing, too!
  9.  
    Has anyone seen Nikki?? I miss her , and hope she is ok....
    • CommentAuthorElaineH
    • CommentTimeNov 17th 2011
     
    Coco, are you on facebook? She posts there & comments there quite often.
  10.  
    No I am not....if you see her say hello! glad she is ok.
    • CommentAuthorsavadele
    • CommentTimeNov 19th 2011
     
    Marinol, pills, side effects???? Who cares!! I am baking some Alice B. Toklas cookies. My DH loves chocolate chip cookies. I may even eat some myself. I am 68 and he is 80. At this point in our lives and this disease....I am willing to try anything. All the pills that he is now taking for blood pressure, cholesterol and Alzheimer's state ...May cause Dizziness, confusion, etc. Can this be any worse. Will it stop him from dying? No. Will it make it easier for him and me, as his caregiver? Yes.
    • CommentAuthordonna L
    • CommentTimeNov 19th 2011
     
    i really think the marinol could have helped us but since DH cannot seem to swallow any pill now and it does not come legally any other way we have had to move to other things. good luck to all that can use it. the few times i could get him to swallow it he ate so good...and focused on tv. now we are on haloperidol for the sundowning and temazepam to sleep at night. i hate the thought of keeping him so drugged to get through the days and nights. i miss my husband sometimes he comes back and flashes his beautiful smile that he passed on to our daughter and there is a glimmer of hope. sometimes it feels like i am living in the movie the awakenings , there has to be a drug that unlocks their brains, i always tell myself and others there are worse things but after a long Sat. at 9:35 and my 57 yr old husband is in his hospital bed i really don't feel like there is. oh well it is supposed to be sunny and 65 tomorrow. maybe i will get outside more tomorrow.