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    • CommentAuthorAdmin
    • CommentTimeNov 28th 2011
     
    ttt for Linda Mc
    •  
      CommentAuthorJudithKB*
    • CommentTimeNov 28th 2011
     
    A friend told me that she knows this woman who cares for her mother and she
    gives her a shower every 3 days. When she gives her a shower she smokes
    marijuana and blows the smoke into the steam in the shower. She does this
    because her mother has trouble swallowing and has trouble with pills. She said
    that the mother was always very calm and easier to care for since she has been
    doing this.
  1.  
    Okay, by now you have figured out that I have a wicked sense of humor....so, I hope no one is offended...but....can you just see it now....all the old people in nursing homes sitting in wheelchairs and puffing on doobies....!?
    • CommentAuthordivvi*
    • CommentTimeNov 30th 2011
     
    judith maybe since shes the one spreading the joy, maybe the friend is the one calmed down prior to shower?? haha..
    •  
      CommentAuthorJudithKB*
    • CommentTimeNov 30th 2011
     
    You may have something there. Maybe she is spreading the joy and she doesn't care much about what is going on around her. Good laugh..I will tell my friend that one.
  2.  
    Lloyd has been on Marinol for about 10 days now. I had read about the possibility of Marinol triggering seizures and it scared me, but....... He's had 3 grand mal seizures since April. He was in the hospital for a week with the first one. He was agitated in the ER so they gave him Norcuron, Versed, and Morphine so they could control him and he went into respiratory arrest. They were total idiots!!! All they would have had to do was let me in there to see if I could calm him first. When I brought him home, he couldn't use the bathroom or even walk. My daughter and I carried him into the house from the hospital and I was thinking, "Oh, my God, what am I going to do now?' He started walking that same day and was much better with the bathroom after about a week. The next 2 seizures we stayed home. I just kept him in bed and held him really close and told him it would be ok. They lasted about 30-45 minutes and he was only tired and out of sorts afterwards. The clarity since the Marinol is amazing! The first couple days he did sit and watch TV. Now he is back to standing in front of the TV so no one can see it. My youngest daughter Maria lives with us. My oldest daughter Kristina just moved closer and he applauds when she comes in the door. Maria is a tough cookie - no monkey business. Kristina is a daddy's girl and smothers him with attention. With the Marinol he has started talking some, but his comprehension has improved about 90%. He's gained about 10 pounds, but doesn't seem to know he's hungry until you ask him and he says he's "real hungry". He said "Hey, Judy" to my sister 4 days ago after not knowing anyone's names for over a year. My only concern is the cost and our insurance not covering it; but I hope our doctor will be able to talk them into covering it after Lloyd's check-up.
    The kids said we should buy marijuana and blow smoke in his face or make brownies. My first concern is it's illegal. My primary concern is how do you regulate the dosage with marijuana? If it comes to that....I'm there!
    Nikki - I love ya! If I hadn't read about your experiences with Marinol, I would've never known about it or fought to get it!!!
  3.  
    Hi Linda, I think it was you that said you would use chicken poop if it worked, thank goodness you did not have to resort to that.

    I also have thought of the actual plant itself. My concern is if it has the same effect as Marinol, if it did, I would not give a hoot about any concerns, he would be getting it. (Not yet though, only if he was as some of you say)

    people get so hot and bothered about pot. IMO, like anything it can be abused, and I don't like spaced out people any more than anyone. However it IS medicinal, and a lovely plant.
  4.  
    Lloyd is putting weight back on and is looking pretty good. The sparkle is also back in his eyes some of the time. The eyes used to be so empty all the time.
    Coco, yup, I did say I would feed him chicken poop.
    Has anyone had any success with OTC lithium or coconut oil.
    Lloyd is taking 2.5mg Marinol 2xday. I'm curious if anyone has had the dosage upped to 5mg yet and how soon they had to do that.
  5.  
    Linda-several years ago coconut oil was a big deal. A pediatrician was giving it to her AD spouse and claimed miraculous results. She no longer posts and it seems it did no good. Actually-even though a vegetable it is a saturated fat-not good. If you put coconut oil in our search engine tons of info will come up.
  6.  
    Don was started on Marinol at the end of January, 2.5mg once a day. In March it was upped to 5mg. once a day and has stayed there ever since. Some weight gain and a more pleasant outlook on life. He's very pleasant and docile. Speech is somewhat clearer, but memory is fading very fast. I think he knows his daughter and me because we are a part of his life right now, but there's not even a name recognition of his first wife, who he first met when he was 15 and was married to until she died 9 years ago.
  7.  
    Thanks, Bluedaze, I can cross that off my list of things to try. For now, I am quite pleased with the Marinol. He is pacing less, less restless. Actually took a decent nap yesterday and still slept ok last night. Of course, he does take a sleeping pill, but that doesn't always put him down.
    • CommentAuthordonna L
    • CommentTimeDec 6th 2011
     
    ok, so i talked to the pharmacist and they said it would not hurt bobby to chew the pill it would just give him more at one time and maybe not last as long. so they suggested 3 a day rather than 2. i have a call into the dr to see about doing that. i have been letting him just chew the pill twice a day for the most part it does seem to help with his focus , mood and he is always ready to eat if food is offered. still once a week or so we have a bad night and stronger meds have to be given to get him to settle down in the bed. i have been reading that in Canada and other counties there is a rx for a spray to deliver the drug into the system , i think it is in phase 3 clicial trials here in the US for cancer patients. i would give anything for some of it now just to know the right dosage was being given at the proper level but i guess we will see if the fda ever approves it for off label uses also. i think it is so stupid that you have to go by the book with these doctors and goverments when something clearly is helping in a no win situation anyway!!!
  8.  
    donna L, insurance companies are more interested in getting out of paying for what the doctor prescribes...so, if the FFDA (the first F is for the F word) only recommends it for nausea in cancer patients; the insurance companies run with it!!! My insurance company has yet to step up and pay for the Marinol that the doctor prescribes. Lloyd has been on for 6 weeks and it has been miraculous. He has put on 16 pounds and is now up to 130. He may have to go to 5mg pretty soon. The pacing and restlessness have now decreased considerably and he is much more agreeable. When Nikki brought up Marinol, I went for it. I am so glad I did it before Sunshyne was able to rain on my parade!!! There are no more desperate times than the last stages of Alzheimer's and desperate times call for desperate measures!!! I have been able to stop the Namenda and the sleeping pills. He is only taking Marinol and blood thinners...no more anti-seizure meds...no more sleeping pills...no more anti-aggression meds. I found the Myoclonis was much worse with the sleeping pills in Lloyd's case. With the Marinol, Myoclonis has almost stopped completely.
    • CommentAuthordonna L
    • CommentTimeJan 5th 2012
     
    linda mc, what time of the day do you give the marinol? they have told me that bobby can chew it and it not bother him just gets more quicker and would not last as long. so we might need to take it 3x a day. i had tried several new things that hospice had given us but they are knocking him out for days at a time and we cannot do that he has lost way to much weight to miss meals because he cannot wake up
  9.  
    donna L, Lloyd usually take his first Marinol around 11 AM and the last around 5-6 PM. He has gained 16 pounds since he has been on it. My instructions for the Marinol say it should not be chewed, but tell Lloyd that!!!
    Most times I can get it down with a glass of water, but there are those few times when he stores it in his cheek like a little squirrel and then he ends up chewing it. AND I end up following him around with a glass of water. As much as those pills cost, there is no way I am going to let him spit one of those little suckers out. New news - Lloyd is now taking NOTHING except Marinol and Coumadin.
    • CommentAuthordonna L
    • CommentTimeJan 9th 2012
     
    fter what turned out to be a very scary few days after a dose of tamezepam which i never plan on giving bobby again!! he would not get out of the bed or wake up for over two days we seem to be back on the road being awake and to eating again. i am using the marinol to increase the eating and he is doing that! thought we were going down for the count . thank you Lord for the turn around. melting the marinol in a bit of ice cream in the microwave has helped with the taking of it. i wish i could say the jerking has eased up but not yet. but it has really on been a few day on a regular time table.
  10.  
    Well, he really started slipping after I stopped the Namenda so I started it again. And I am giving him half a sleeping pill at night. That is more for me than it is for him. The doctor wrote me a scrip for Marinol 5mg today. That way I will have it if I need it. I still have a couple refills of the 2.5mg The doctor also wrote scrips for a wheelchair and a handicapped sticker for the car. Stupid me is planning a trip to Florida for a couple weeks...driving, but taking my 18 yr old grandson to help with the driving and Grandpa. Sebastian outweighs Grandpa by about 50 pounds and is quite fit so he will be a great help. Planning on doing a day at Disney in the wheelchair. I don't think he can take any more than one day. Then we are going to my ex son-in-law's in North Port on the gulf coast where we stayed a couple months in 2010. I'm planning on being gone for a couple weeks, but it could stretch to 3 weeks or whatever we have the meds for.
    • CommentAuthorElaineH
    • CommentTimeJan 14th 2012 edited
     
    Linda Mc, NO not stupid you! SMART you! If you think you & grandson can handle it....go for it! I thouht our travelling days were over too, but we made two 900 mile trips & one 400 mile trip last summer & DH did fine. It sounds lie you have everything planned out so I wish you good luck!
  11.  
    Thanks for the encouragement, Elaine. I am calling for the refills on all his meds today and we will probably be leaving on Friday. I have a 21 yr old grandson in North Port and after little consideration, we are going to get him and head back up to Disney. That way if Grandpa gets tired Sebastian and Benjamin can pal around together while we sit around. Lloyd and I have both been to Disney before, but never together. It's just one of those things I've always wanted to do. And considering he enjoys living in the past, what could be better than Disney?!? He was pretty jerky this morning and fell and got a little cut on the back of his head. I got the bleeding to stop, but considered taking him to the ER and thought better of it. Just another bill and some jackass wanting to do a CT scan so he doesn't have bleeding in the brain that could kill him. Oh for such an easy exit! I am so sick of hospitals making a buck off our tragedy so I have learned to say "no".
    • CommentAuthorlilkim
    • CommentTimeJan 26th 2012
     
    I thank goodness found this thread as I was trying to find someone who had tried, at least some form, of Marijuana. Just a bit about where I am coming from, although I am not a spouse, my father has it. My family (husband and 5 children) and mom and dad all live together. I have watched my father disappear, I have watched my mom, who still works, come home and have to deal with her husband that she has been married to for 40+ years accuse her of poisoning him, and say mean hateful things to her and to actually try and hit her. I watched her struggle with putting him in a home and dealing with the guilt of putting him there. We have now brought him home do to cost and POOR care. My husband who thankfully was laid off (never thought I would say that) watches him during the day.

    The reason I ended up here is because I am getting my dad a Medical Marijuana card and wanted to see if anyone has tried it, this is the only thing I have found so far. I am tired of the Doctors giving him DANGEROUS crap that make him worse. Nothing has helped him. They tried the ones that are suppose to help, either made his agitation way worse, or gave him terrible diarrhea. He usually starts sundowning around 3 p.m. for him that means repeating the same conversation over and over, usually some memory from his childhood (we think) and it isn't a pleasant one, and this continues until 1 a.m., he sleeps very little, and wants to be up by 4 a.m. They gave him Ativan for the agitation, made it worse, told my mom to give him more??? We had to take him to the ER because he tried to attack my mom when she gave him a shower and ended up falling the ER doctor ended up giving him Haldol (talk about a drug that has side effects) did it work, NO made him worse, what do they tell us to do, give it to him twice a day, oh and then they added Trazadone at night. The Trazadone made him tear up the bed, and no sleep.

    I have found out about a oil called Rick Simpson oil made from marijuana, which is what I plan on giving my dad once we get approved. Although I will not be using his exact method, I am hoping using the two different strains we will see some relief for my dad. The reason I won't ask for the Marinol is because it is a synthetic form of Marijuana (because some drug company wants to make money) Luckily here in Oregon marijuana is approved for Alzheimer's agitation.

    I am appalled that people would make Nikki feel like she has to defend herself or question her if her husband actually has Alzheimers. Any drug you give/take can have a side effect good or bad. As far has it hurting someone, marijuana has been around a heck of a lot longer than anything we are giving them now and to my knowledge has never killed anyone. The way I look at it his quality of life SUCKS, I know if my dad realized what has going on sooner he would not be here. So what if it happens to make him a little stoned is that so bad??? Is it any worse than what the other meds did to him??

    Nikki THANK YOU for being brave about posting your experience. I am going to start blogging my experience once we getting rolling here. Hopefully you will get to see this posting. I am going to email you as I would like to follow you on facebook.

    Thanks again for being so brave!
    • CommentAuthormary22033
    • CommentTimeJan 26th 2012
     
    Interesting - Marijuana Mouth Spray Sativex May Hit Shelves By 2013:

    http://stlouis.cbslocal.com/2012/01/26/marijuana-mouth-spray-sativex-to-hit-shelves-by-2013/

    said to give the benfits - without the "high"

    Wouldn't the "high" be one of the benefits.....?
    •  
      CommentAuthorNikki
    • CommentTimeFeb 6th 2012 edited
     
    I stopped coming here because of this thread.... I just got soooooooooooooooooooooooo sick of the "high" jokes, and the negatives replies. For the first time in ages I was happy, and instead of being able to bask in that happiness I felt I had defend my choice and even Lynn’s diagnosis. Instead of finding comfort here as I always had in the past, I felt on edge and my feelings were hurt often. I let that keep me away, and now I wish I hadn't let hard feelings prevent me from being with the family I have found here. I also feel like a heel for not being around and supporting those of you who were trying the Marinol. Ugggg.. I am sorry.

    I am going to go on a minor rant, so I ask for your forgiveness and extra compassion for my situation in advance….. I just do not understand peoples problem with Marinol possibly causing a “high”. Morphine is given out in just about every "comfort kit", it causes “highs“, yet no one has a problem with that. No one makes “high” jokes about giving it to our loved ones. Narcotics are certainly mind altering, and many cause extreme highs. Being that I suffer with horrific pain daily I know firsthand that narcotics are easy to get, and given out entirely too often. I refuse to take them, yet many take them for pain daily. No one seems to have a problem with these medicines causing a “high”. I wonder why the huge stigma with Marinol?

    Marinol is not the same as marijuana. Period. Synthetically made THC is used to manufacture Marinol. None of the other over 400 chemicals and carcinogens in marijuana are used in it. There is plenty of real information and facts available if anyone is interested. A simple Google search will yield many results.

    Ok, enough of the negative…

    Linda, Donna and Pris…. I am sorry I was not here to encourage and support you. I am however delighted to hear you are seeing positive results. Awesome!

    As for insurance coverage, I had to switch companies to one that would cover the cost. A bit of a pain in the butt with paperwork, but well worth it. Maybe that would be an option for you?

    As for getting them to swallow the pill, we put the capsule in a tiny medicine cup, put in a little ice cream and then put in in the microwave for a short time… Just enough to help melt the capsule a bit. The we mix in a little more ice cream and Lynn is able to take it with no problem. The nursing home doctor said this was fine, but please do ask your own doctor first. (yes covering my ass before I get in trouble again, lol)

    Now back to our personal experience with Marinol…..

    Late October we came as close to losing Lynn as I ever want to get. A simple cold is all he had, but he stopped eating. When asked, he was hungry, but the poor bugger just couldn’t remember how to eat. Broke my heart!! Had to go through the whole feeding tube dilemma .. It was such a difficult time.

    Lynn’s doctor sat and held my hand, held me as I broke down, and said he did Not believe Lynn was in the dying process… but if we couldn’t get him to eat, he wouldn’t “last long”. It was so frustrating, gut wrenching, because he clearly wanted to eat, but couldn’t. I went online and did as much research as I could on feeding. I called my Neurologist and friend and asked for his advice. He offered some tips on feeding as well. We all felt if we could just get him to understand how to open his mouth for the food that Lynn could once again rebound. We increased his dose of Marinol from 2.5 once a day to twice a day/

    The cold subsided, the Marinol kicked in, the feeding techniques worked, and I am delighted to say Lynn is doing amazing! Even better than before. He has said my name, MY NAME!! God, what that means to me……

    (cont...)
    •  
      CommentAuthorNikki
    • CommentTimeFeb 6th 2012
     
    Our days are filled with laughter and love. He reads his flashcards daily. They are simple words, but who cares, he can read!! He talks and talks and talks :D. Some is just gibberish, but even that sounds like music to me. A couple examples I shared with our family on facebook…..

    Tuesday Feb 2nd … “
    Lynn's ability to once again talk, and more, express himself continues to amaze me. He does of course talk some gibberish still, but he also says things so beautiful, it takes my breath away. Today was one of those days..... Upon entering his room..

    "I love to see you come in that doorway" He holds eye contact while pausing for the longest time. He then rubs his chest in a circular motion.. and says "You make me whole again" ...................... OH!!! *tears*”

    The next afternoon my niece and nephew went with me to visit with Lynn…. “He got me all teary eyed again today... the kids and I went to visit with him this afternoon. He spun a few tails, read his flash cards with the kids. We took him for a stroll around the place and then he looks at each one of us, takes his time looking at us, his smile getting bigger the whole time... and says " you make me feel happiness" *tears*”

    Marinol has been nothing short of a miracle and I know without a doubt Lynn wouldn’t be here today if he hadn’t been given it. I am so glad I looked outside the box and so grateful for pieces of “My Lynn” I am being given.

    I am working with my Neurologist, he is helping me write a letter to Marinol manufactures. There needs to be more research and it is my hope that my letter, with before and after videos of Lynn will prompt them to look into it more. It isn’t a cure, but is improving the quality of life for many. It is a start…..

    Have missed you all…. ((big hugs))
    •  
      CommentAuthorNikki
    • CommentTimeFeb 6th 2012
     
    I was remiss in adding that with the new feeding techniques and increased dose of Marinol that Lynn for the first time in 3 years is now eating wonderfully for the staff. As most of you will remember he would eat only minimal for the staff and if I couldn't go in to feed him the guilt would eat me alive. It was a HUGE responsibility that weighed heavy on my heart. I held a "training" with the staff to show them the things I learned that worked best for Lynn. I am not sure if it was that or the increased dose of Marinol, or a combination of both... all I know is he is eating like a piggy and I feel relief for the first time in three years. Such a blessing to know if I am too sick to go in Lynn will not suffer for it. WHEW and double WHEW! :)
    • CommentAuthorcassie*
    • CommentTimeFeb 7th 2012
     
    Thank you so much for the update Nikki, it is such a thrill to read that there is some joy (communication and eating!! ) for you both now. What a clever girl you were, to get Lynn onto the marinol. Hope that your health is ok as well.
    • CommentAuthorandy*
    • CommentTimeFeb 7th 2012
     
    Nikki, I am sooooooooo happy you are back!! I have wondered about you and Lynn, but thought perhaps there had
    been a reason and I had missed it during an absence. Thanks for coming back....someone needs your encouragement!
    • CommentAuthoryhouniey
    • CommentTimeFeb 7th 2012
     
    My granddaughter was very interested in your use of marinol.She said it is not available in PA yet,she has been looking up all she can on the internet,hopes it is something that can help "PAPPY".Hopefully our insurance will decide to cover it.It is marvelous the results you got with Lynn,so happy for you.
  12.  
    Welcome back, Nikki! You are amazing and I, for one, would do whatever is necessary for DH, if it came to that. I was so happy to hear of your working with your neuro about the research of Marinol. I wish you and Lynn only good times in the days ahead! Hugs.
  13.  
    Oh Nikki it means so much to me too to have your sunny disposition back. It is so sad with the loved ones passing on, and I was so depressed yesterday for Ol Don.

    yaay I am glad you are back, I have only been here a short time but missed you so. I know that not everyone can see eye to eye, but certainly most everyone here does, and for me this is a lifeline.
  14.  
    Welcome back dear friend. You were missed!
    •  
      CommentAuthorNikki
    • CommentTimeFeb 7th 2012
     
    ((Cassie)) ((Andy)) ((yhouniey)) ((Vickie)) ((Coco)) and ((Diane)) Thank you all so much, your support does and always has meant a great deal to me ♥

    I am trying to post a new video I took of Lynn today but facebook isn't cooperating. Grrrrrrrr

    It is great to be back, but also overwhelming.. I don’t know where to start! I think I will need to ease back in so I don’t overload. Is great to be back and again, thank you all ♥
    • CommentAuthordivvi*
    • CommentTimeFeb 7th 2012
     
    Nikki its good to see you posting again friend. for whatever reasons, we must try to overcome and regain the much needed help from all our friends here. we need to work as a 'unit' here comforting and offering support when we can, its indeed wonderous that your lynn has made such dramatic improvements! good for you going out of the box, and how great to hear you neuro is working to improve the ideology behind the drugs useage!
  15.  
    Nikki-most who post here are under terrible stress. Sometimes we say what is in our hearts and minds before thinking how others will take what we say. In the end we are all in this together-with love. Welcome back.
    •  
      CommentAuthorJudithKB*
    • CommentTimeFeb 7th 2012
     
    Great to see you back. I always enjoy reading your posts and your love story. I figured your dh was not doing well and you were just busy spending as much time with him as you could. But, I'm glad I was wrong and you are getting to see your dh in a better way right now. Some here who frown on the use of certain medications may have to do with the age thing. Most of us that have children and/or grandchildren have learned to accept
    a different life style then we were use to. I'm certain no offense was meant directly at you.
  16.  
    Nikki--I agree with bluedaze* about most members here coping with terrible stress and they may speak without thinking things through. But I think all of us rejoice when we find out someone else who is walking this path has any measure of pleasure or success in fighting the good fight. Please continue to keep us in the loop with what's going on with you and Lynn.
    •  
      CommentAuthorNikki
    • CommentTimeFeb 8th 2012
     
    ((Divvi)) ((Nora)) ((Judith)) and ((Marilyn)) So good to "see" you all again. I thought because I was on the facebook site that I wasn't missing too much here. Turns out I was wrong, imagine that lol. Divvi, you are not on the facebook group and I have missed you!! I have always felt a connection to you, good to see your name and once again gain strength from your kindness.

    I have to agree, we are all under heavy stress, including me... hence why I was so sensitive and easily hurt. It wouldn't have meant jack squat coming from the average joe, but here...... Kim and Charlotte posted on the FB group about this and Marinol, it helped me a lot. Thank you both, and for all of you who replied. I am in a better place now, it's all good :)

    Love and hugs to you all ♥
    •  
      CommentAuthorNikki
    • CommentTimeFeb 8th 2012
     
    yhouniey, I just reread you post… please pass on this information to your granddaughter.

    Marinol is legal in all states.

    " A pill known as Marinol has been legal and approved by the Food and Drug Administration for use with a prescription anywhere in America since 1985. "

    http://www.cbsnews.com/stories/2009/08/03/health/main5209380.shtml
    • CommentAuthordivvi*
    • CommentTimeFeb 8th 2012
     
    no doubt nikki if you find me its HERE! i dont do facebook or twitter.. :(
    •  
      CommentAuthorNikki
    • CommentTimeFeb 8th 2012
     
    Not into twitter either, but have to admit I like facebook. Is a wonderful way to keep in touch with my family who is widely spread out from New England to Australia! All my siblings now have an account, we mainly joined just to stay in touch with each other. Is pretty awesome :)

    I couldn't go too long without my "dose of Divvi" ♥♥♥
    • CommentAuthordonna L
    • CommentTimeFeb 8th 2012
     
    nikki, thank you so much for thinking outside of the box and pushing for what you feel is right. it helps us all to do the same. the marinol started helping bobby eat more but then he got down pretty bad at new years , i had been tampering him down on his citalpram because the side effects listed lost of appetite and uncontrolable jerks . he was in the bed for almost 72 hours with nothing but some liquids. so all meds stopped. i did not start him back on the citalpram. it has been unbelieveable how much his appetite has increased. he lost 10 pds that weekend but with the med change and the help of Two Cal supplement drinks he has gained it all back , he is getting stronger everyday. any improvement is another day he is with me and the family!! what works for some does not for others but if you don't try you don't know and you gave me the courage to try that then to think and research and try something else. is he cured no. but better is happiness!!
    •  
      CommentAuthorNikki
    • CommentTimeFeb 8th 2012
     
    Donna I remember Bobby doing so badly, what a difficult time that must have been for you! I am glad he has rebounded so wonderfully ♥ I am delighted to hear the Two Cal worked as well for Bobby as it does Lynn. Anything we can do to help them. And yes, better IS happiness :D ((hugs))
  17.  
    Just got back home from Florida yesterday afternoon. Nixed Disney and tried Busch Gardens. What a BOMB!!! Took the wheelchair and 2 grandsons (Sebastian-18 and Benjamin-21). Lloyd wanted nothing to do with the chairs so I told the boys to go have some fun and I spent the day chasing Lloyd with his own wheelchair. Never got to see one show. Finally put his chair on the train and rode and rode and rode that sucker until the boys called and said they were hungry. I tried strapping him in and he would stand up and the chair would collapse behind him. I told him it was a good thing we were in a public place with thousands of people. Then at closing time the boys got stuck on a coaster that broke down at the top of a hill so I took Lloyd to the parking lot and more drama!!! I'm pushing his chair and holding his arm and he decides to make a break for it. So now I'm leaving the chair and running after him. A kind Mexican gentleman helped me with that. (Muchas gracias!)
    Got the medicine pretty much squared way. He now takes 1 Namenda, 1 Aleve, 1 Coumadin, and 1 Marinol between 11 and noon and he is good for the entire day. The Marinol is 2.5mg. I have a prescription for 5.0mg on file at our pharmacy for whenever I decide to increase it. I decided to start one Aleve per day for any inflammation that may be going on in his brain. I've read that when the plaque builds up on the neurons in the brain that the immune system in the brain kicks in causing swelling and then headaches. So I talked to the pharmacist and he suggested Aleve which is an anti-inflammatory. No headaches since but I feel that the Marinol helps with that, too.
    Nikki, I'm wondering when I should increase the 2.5 to 5.0. He seems ok, but he has reached a plateau and maybe the 5.0 will cause some improvement. What is your opinion on this?
    •  
      CommentAuthorNikki
    • CommentTimeFeb 12th 2012
     
    Hi Linda, I had to giggle when I read how you rode and rode the train. I would have done the same thing! Have you rested up after your "vacation"?

    As for the Marinol dose, I do remember it was the doctors intention to increase Lynn's dose from 2.5 to 5mg. We were going to increase it quickly if the 2.5 didn't stimulate his appetite. But the 2.5 worked wonders, for everything, so we never did increase it. This past October (10 months from initial dose) we did increase his dose to 5mg because as I stated above, he had forgotten how to eat. It again worked miracles and Lynn is doing better than ever. Not cured by any means... but better.

    I don't think there is a steadfast rule of when to up the dose. Some I know started right out at the 5mg. I have always believe less is better, so we started low. I would weigh how good your DH is doing on his dose now. If he is doing well, I wouldn't mess with it. I think the doctor gave you the standing order for the 5mg, for the same reason our doctor gave it to me. He left it up to me to decide. However, I would still talk it over with your doctor first. I for some reason I can't really explain wanted to hold out on the increased dose for as long as possible. it was my "ace in the hole" if you will. I wanted to have one last rabbit to pull out of my hat in case something bad happened. Turns out increasing the dose when I did was the smart thing to do as Lynn is now eating wonderful! Better than he has in years. Talk with your doc and follow your gut instinct. ((hugs))
  18.  
    This drug is so good, I just can't understand why it's not covered by the Medicare Part D prescription formulary. It's costing me about $350 a month.
  19.  
    Nikki, are we ever rested up? Thank God there is still some humor in all of this!!!
    Lloyd is doing ok with the 2.5mg, but I find myself holding out for as long as possible, too. One a day is working well right now and I give it to him between 11 and 2.
    PrisR, I am paying for the Marinol out of pocket, too. Same situation with the Medicare Part D. Our family doctor prescribed it for me because the neurologist wouldn't and silly me thought it would be covered because the doctor prescribed it. I took it to the Giant Eagle pharmacy and when they told me it was not covered and cost $399 per month, I went and sat in my car and cried. HOWEVER a girl that worked there dug around for all the discounts they could give me and eventually I got it for $250 per month. I started out juggling money and getting it every 2 weeks. I would call around. $100 is a $100 that is better off in your pocket!!!
    ((big hugs)) to you Nikki!!! I never would have tried Marinol if it hadn't been for you!! So extremely grateful that the naysayer hadn't expressed their opinion at that point. Glad I went for it. It has been one of the high points of this journey!
    •  
      CommentAuthorNikki
    • CommentTimeNov 2nd 2012
     
    To the top for Midwest

    And an update:

    Well, it has been close to 2 years since Lynn was put on Marinol. Any of you who know our story know that Lynn was just so so lost to me. Barely able to answer yes or no, it took GREAT efforts to try to get him to respond at all to me. He was locked away about 90% of the time, eye contact was rare.

    Now I can hardly believe he is the same person who was held prisoner in the iron chains of Alzheimer’s. He is still of course late stage, the drug can not alter the fate of our loved ones. It doesn’t bring memories back… but it has somehow loosened the ties that bound him so tightly.

    He is now engaged, he can talk, he can read (not books), he laughs at the TV, he taps his toes and hands at music shows, he laughs out loud and he once again smiles that smile that lights his eyes and fills my heart with joy.

    But the reason for my update tonight is that despite a recent battle with Pneumonia, bronchitis and a UTI, Lynn’s has steadily continued to gain weight. He was starving to death….he has now gone from a horrifying 91 pounds to holding a steady weight of 120-122. That is a 30 POUND GAIN!!! He has maintained this weight for about 4 months now. Perhaps he wont gain any more, but that he was able to gain at all is nothing short of a miracle to me.

    I was told two years ago that he was dying. That I should not put in a feeding a tube and just let “nature takes its course“. Basically what they were saying was let him starve to death. Every fiber of my being rebelled against letting him die that way. I was frantic and beyond desperate, he was already dying, what did I have to lose? I am forever thankful I demanded he be given the Marinol!!!!!!!!!!!!!!!!

    Words can never express how much these past two years with Lynn have meant to me. ♥
  20.  
    I am glad Lynn is doing so well. I cannot afford the Marinol anymore and Lloyd is not doing well. The 2.5's didn't get it anymore and the 5's were going to cost over $500 out of pocket per month. I just cannot afford it. If we make it to September when I can draw SS maybe I will consider it again.
    •  
      CommentAuthorNikki
    • CommentTimeNov 3rd 2012 edited
     
    Linda, I remember when you told me you couldn't afford it any more, if I had money I would send it to you!

    There are companies that cover the cost. I have never had to pay even a co pay for it. Last year we switched him to Humana and they have paid 100%.

    It's open enrollment time, perhaps you could get him on a plan that covers it? I know here we have free help finding the best policy for us. For my plan I call them, tell them my medications, then they input the info and give me the lowest plan prices.
  21.  
    Nikki, it will be ok. We just gotta do what we gotta do. I've explored other prescription plan options, but I can't get a straight answer from any of them! I had one person tell me to sign up with them and find out. Yeah, right.
    •  
      CommentAuthorNikki
    • CommentTimeNov 9th 2012
     
    Linda, can you write me, maybe on FB and I will try to find out more information for you. ((hugs))

    After reading my update my sister said I should have included that 122 is a good weight for Lynn. His fighting weight prior to AD was about 145, so that isn't a drastic change. Well, at least not like the 91 pounds! He was always rugged though! For the first time in his life he has a little belly, I have to get him new pants as his are now too tight. YAY!! :)